Hello and welcome to my ‘Living With Chronic Fatigue Syndrome’ blog. I am a 29 year old male who has suffered from Myalgic Encephalomyelitis for over 11 years. I live in Adelaide, Australia. This blog will focus on what I am trying to do to overcome this illness.
This is a brief summary of my ME/CFS journey:
During June of 2005, my first symptom emerged- coughing up mucus. This remained an isolated symptom until I began feeling increasingly fatigued during September 2005. I experienced reoccurring tonsillitis (four infections) from December 2005 until January 2006, which resulted in a tonsillectomy. Severe headaches then became prevalent in April 2006. I was diagnosed with ‘ME/CFS’ in July 2006 and with ‘severe ME/CFS’ during August 2008. Since the onset of my illness in June 2005, my health has steadily declined, almost uniformly. I now spend 23 hours a day in bed (the other 1 hour lying in a chair next to my bed) and struggle to leave my home without ‘crashing.’ I have over 40 symptoms and I haven’t been able to walk 100 metres since 2008, as this will also cause me to ‘crash.’ Prior to my illness, I was a healthy, middle and long distance runner, almost 18 and about to study astrophysics at university. I am the 7th person on the maternal side of my family to be diagnosed with ME/CFS.
A blog entry documenting my CFS story in detail can be found here: https://livingwithchronicfatiguesyndrome.wordpress.com/2010/03/29/my-story-possible-events-that-caused-my-cfs/
A blog entry listing my current symptoms can be found here: https://livingwithchronicfatiguesyndrome.wordpress.com/2009/08/25/a-list-of-my-current-cfs-symptoms/
A blog entry describing the severity of my CFS can be found here: https://livingwithchronicfatiguesyndrome.wordpress.com/2009/11/16/how-severe-cfs-is/
Like you, I came down with CFS as a teenager. I suffered with it for over 20 years and eventually became so ill that I was completely bedridden. I saw dozens of doctors and spent thousands of dollars to try to get well again. Finally I found an excellent physician. We tried numerous treatments but eventually stumbled across a treatment protocol by Dr. A. Martin Lerner. It calls for 1g of Valtrex four times per day for six months. It only works for patients who have Epstein Barr and/or HHV-6 but not those with CMV. (Patients with CMV can be treated instead with his Valcyte protocol.)
That treatment changed my life. It took about 2 months before I started feeling better and by 4 months I was almost completely well. In the two years since, I have been more healthy than ever and have made up for lost time by applying for and getting accepted to pharmacy school. Unfortunately, my CFS has begun to return again but I am confident that another round of treatment with Valtrex will heal me once again.
I don’t know if you (or your other readers) have tried this treatment method but I thought I would post it so that you were aware of it. It is only effective for a certain subset of CFS patients but hopefully someone can benefit from this information.
Best of luck to everyone! Be well!
Hi !
I also have EBV or MONO.
Since then I am not healthy inside just on a paper because all tests are good and I done 10000…
I have lack of energy, sleep do not help at all !
Maybe Valtrex will help me too don’t know…
Elizabeth, I would love to find out how you are doing now… Did the second round of treatment help? Please let me know!!
I have been sick for 12 years. I did try the valtrex and valcyte treatment. It was very difficult for me, making me even more ill than I had yet been from CFS. I tried many times, but always became so sick I had to stop. Eventually, I had what seemed to be a remission – I felt better than I had since I had gotten sick. Unfortunately, one two week vacation that required a cross country flight and I was thrust back into full symptoms. So i have had mixed results with the valtrex/valcyte treatment, which might be explained by what little I gleaned from new study published this month (Jan, 2014) which looks at an immune dysfunction. I wonder if the herpes 6 virus (cytomegalovirus ), which was the disease being treated by my doctor, is less a cause of illness, but a consequence of a immune disorder. I wish I could better understand the research – unfortunately my neurological inflammation and resulting “brain fog” has made very well educated brain nearly useless at times : )
Could you please give me an update on how you are doing and weather you are still using Valtrex?
Thank you,
Hi I just signed up as I have had much success in beating this monster over the head! I was so sick and I get it. I had to get the stress out of my life, eat more protein ie eat lunch like supper and supper like supper meaning full meals and snacks in between meals and breakfast included some protein this must be meat fish or poultry no substitues like eggs, cheese I think you get it.
I also listened to my body and it did take time but the day I sold my walker and wheelchair was such sweet victory and each of us can have this! I know it is hard to cook and all that stuff but I still tried when I could and got a community centre which helps people who are disabled to come and help me with bathing. I kept as much of a social life as I could which isn’t much but it was over the telephone and some people came over. I saw Dr. Tompkins at the Burke pain institute in Calgary and she helped me and was very compassionate. I also started on an SSRI and no I wasn’t depressed but somehow this monster likes our nervous system so I took it after a few failures of other drugs. It is Effexor XR with clonazepam, seraquel to sleep like a baby and it takes away my pain. I do take Aleve after a whiplash injury and when taken with stomach protector pantoloc, it is a good combination for any pain. I stopped being hard on myself and realized that this will pass and I was right. I also watched what made me worse and foods such as milk products that I loved gave me enormous pain! Citric Acid, citrus fruit. Anything with milk in it. Packaged foods. Chemicals perfume! I had to change my plans so I gave myself permission to just be. No pressure. If people didn’t like it tuff! I loved myself, no I wasn’t selfish I just simply gave my body what it needed and waited it was a long wait but my faith also helped me. Any healing service I could go to I went to. I found great peace instead of looking for more answers. Bless you all. There is a light at the end of the tunnel, just continue to be the pajama person for how ever long it takes, I got a dog it was so nice to have him. Cheers!
I heard Jasper Lawrence talk on the Phillip Adams show ( Late Night Live 27/4/2010 – podcast available) and I was very impressed. I wonder if it might have some relevance.
http://autoimmunetherapies.com/
Thanks for the comment 🙂
I listened to the podcast and found it very interesting. I think hookwork therapy may have some relevance for a subset of CFS patients. That subset would need specific inflammatory cytokines levels to begin with and Th1/Th2 and Th17 levels would need to be monitored as the hookwork therapy progressed.
I’ve read that scientists are now starting to apply hookwork therapy to inflammatory disorders. This is interesting as CFS is in some contexts considered an inflammatory disorder. I have also just skimmed across some of the hookwork studies including the very promising Crohn’s disease study. Scientists are currently planning larger scale hookworm therapy trials. It will be interesting to see how these studies pan out and it would be interesting to hear of any anecdotal evidence of CFS patients trying hookwork therapy. I’m personally not brave enough to be the guinea pig just yet! The only information I could find regarding CFS and hookwork therapy is here: http://forums.aboutmecfs.org/showthread.php?507-Hookworms-Our-Friends
Thanks again for the comment.
Leave it to the US government to slap sick people in the face. There are at least 3 studies that I know of that are getting ready to be published and as far as I have been informed they are all positive XMRV. I also have it on excellent authority that the CFS Biobank project has already found positive XMRV cases in the first batches of blood and tissue samples received. May the CDC be smitten with CFS – since it is ‘psychological’ in their definition they should have no trouble overcoming their problems with effective Cognitive Behavioral Therapy!
hi there
i want to thank you for your blog and let you know i am praying for you..a couple of things that you may already be aware of
a) cold hands and feet often is often a sign of hypothyroidsim; wilson’s temp syndrome http://www.wtsmed.com; talks about how under stress the body turns down its own temperature (thyroid) to preserve energy. also peoples who have experienced famine (such as irish, russians, and i belive australians there are more) have a genetic predisposition for thyroid (body temps=thyroid) to crash. thyroid is your bodies furnace that converts enzymes and burns off toxins (virus, bacteria). wilson’s protocol is to use srt3 (sustained release t3) to heat up body at cellular level
b) the body under stress results in adrenal fatigue. you must treat and support adrenals before treating thyroid
am sending light energy to you
michael
Your story touches my heart. My son was also an Elite Track Runner (400m & 800m and ALL infield events) and contracted CFIDS at the age of 14. Stay Strong. http://vlgonvalcyte.wordpress.com/
I am reading your blog with great interest and full of admiration for your perseverance and intelligence. Your insight and brilliance helps others without a doubt as I am sure that major breakthroughs will eventually alleviate this debilitation. Keep on keeping on; and we are with you in spirit and in our thoughts.
@Edwyn Thanks for the kind words 🙂
I also appreciate your ongoing support and empathy. I am hopeful that a major breakthrough is imminent and that it will be paradigm shifting.
Dear CFS Sufferer, could you please take a look at the following Australian Webpage.
http://www.findacureclub.weebly.com
You can email me direct from this page if you wish. I am very pleased to meet you and invite your input into the site if you so choose.
Lesley McLeod
Hello
I am thinking of trying LDN, which is how I came across your blog. I live in Adelaide also and I was wondering who prescribed it for you and also, which compounding pharmacy you used? I don’t really have a Dr currently as I am yet to find one that is all that helpful. I have tried hydrocortisine before for adrenal fatigue but unfortunately from the very first dose it would make me very aggressive/wired and edgy which would increase along with the dose. Needless to say, I didn’t last long on it. Thanks 🙂
Thank you for a very good blog. You write well, give good information – clear and easy – I can read most of it in one go!
Good luck and Merry Christmas from Norway!
I went to high school with you.
Have a Merry Christmas,
Max
Hey Max,
Wishing you a Merry Christmas too.
Sounds familiar!
Happy New Year! We hope there is some alleviation for you this year. You deserve it. We are with you in our thoughts and conversations every day.
I love the comments you wrote. I couldn’t agree more.
I am always glad to read about possible treatments for ME/CFS as opposed to cognitive behavioral therapy.
I’m curious – have you ever heard of cell-mediated immune disfunction and/or “transfer factor”? I started treatment with an immunologist who follows the same treatment protocol as Dr. Bill Rea in Texas (Environmental Health Center). It has been extremely beneficial.
The treatment involves 3 main components: Thyroid (when there is a verifiable thyroid issue; mine was not obvious w/out a sonogram); custom allergy antigen testing/injections; and “transfer factor” injections (aka dialyzed leukocyte extract). “Transfer factor” is made up of healthy people’s immune systems and can be obtained from a blood bank. Within 3 months of starting transfer factor injections (which I was taking prior to beginning thyroid), I started feeling like myself again. However, without antigens to keep your immune system in balance, the transfer factor will ultimately be unsuccessful.
The idea is that our immune systems need to be rebalanced b/c we are overreacting to allergens and underreacting to inflammation. The transfer factor and antigens teach our immune systems how to act again.
I also see Dr. Chia from time to time, and have seen Dr. St. Anand (both of whom you mention in your blog). Unfortunately, their treatments were not able to help me at all…
Great postings. Best of luck!
Hi Melissa. Not sure if you read this blog anymore, however I am currently on Oxymatrine & Inosine (strongly positive 2+ enterovirus) and am not having much luck with it. Dr Chia has mentioned that elivated nagalase and/or glutathione deficency is the reason why he’s treatment only works in 52% of patients.
What are your views on this?
Btw I am from Brisbane Australia.
Hi
I am trying to set up a CFS bloggers network … the main initial benefit being to increase SEO visibility and “clout” by reciprocal links. Can I add you to the list? Once the full list is made I would ask only that you create a similar list in your own sidebar.
Kind Regards
FA
@cfsinfo
I think that it’s an excellent idea to set up an ME/CFS blogger network. I would love for this blog to be added to your sidebar list. I have added your blog to this blog’s sidebar list. All the best, cfssufferer.
Hi,
I am the mother of a 21 year old daughter who was diagnosed at the age of 16. It has been five years of hell. We found a Dr. Wayne Wightman in Torrance,CA two years ago who finally helped my daughter regain her life. Her recovery lasted about a year it was wonderful, but she is now relapsed. She is currently taking heparin injections, thyroid T3 and numerous supplements, but nothing seems to be helping now. It is extremely painful to watch her go down hill once again. Why can’t doctors find a way to cure this cruel disease? I wish you all the love and strength and hope we can send. You are not alone!
Lorrie – I am a long- time sufferer and researcher (self-proclaimed!) of CFS, ME, FMS. According to Dr. Paul Cheney, a leading expert who experienced CFS himself, T3 is one of the worst hormones you can give someone with CFS. I haven’t figured out what the reasoning is yet, only found that it will worsen certain symptoms. I am trying to find more on this, but wanted to pass this on to you. I am also taking T3, so it’s frustrating . . . anyway, just want to help.
Jennifer
I am considering going on T3 because Armour is not working and has caused a build of Reverse T3. Did you find anything?
Aisling
Think Paul has seen negatives in relation to t3 on his “echo-terrain mapping” that he has developed.
Please see:
my blog at http://www.cpnhelp.org/blog/ladybug.
C. pneumoniae in CFS and FM
http://www.cpnhelp.org/chlamydia_pneumoniae_in_0
David H Freedman, Lies, Damned Lies, and Medical Science
http://www.theatlantic.com/magazine/archive/2010/11/lies-damned-lies-and-medical-science/8269/
Dr John Ioannidis, Why Most Published Research Findings Are False
http://www.plosmedicine.org/article/info:doi/10.1371/journal.pmed.0020124
Evidenced-based Medicine or Easy-bake Oven: Tension Between Evidence and Reality
http://rawarrior.com/evidenced-based-medicine-or-easy-bake-oven-tension-between-evidence-reality/
Dr Richard W Smith, In Search Of an Optimal Peer Review System
http://www.jopm.org/opinion/2009/10/21/in-search-of-an-optimal-peer-review-system/
Melissa Sweet, Can sunshine cure the unhealthy entanglement of industry and health care?
http://www.australianprescriber.com/magazine/33/5/136/7
I can be contacted via Cpnhelp for discussion.
Regards,
Ladybug
Perhaps I should explain more. I think that would be best done by asking you to read my story here: http://perfecthealthdiet.com/?p=76. I am the Australian artist to whom Dr Jaminet refers in his blog post.
Perfecthealthdiet blogger Paul Jaminet PhD is an astrophysicist who has made a remarkable recovery. But then, he is a remarkable astrophysicist.
Ladybug
Hi,
I am also a sufferer of CFS, but not as debilitated as you. I am a healer and I was wondering if you would mind if I sent you some distant treatments, to see if it helps you at all. I know you’ve tried lots of things and I am not saying it will make any difference, but if I can do at least one small thing to make your suffering less, it would be something. If you are happy for me to do this please email me. You don’t have to do anything other than answer a few questions via email that help me with the treatment.
All the best
Dawn
Hi Dawn I will be glad to have your emal 😀
Hi,
I love your blog and love your approach to CFS – you’re being a true scientist and I think what you discover down the line could be immeasurably important to anyone suffering with the condition.
One thing I’d add as a consideration: I have managed to make improvements from a very suborn case of CFS, but from my own approach and monitoring, my only genuine improvements have been extremely slow (BUT extremely consistent).
I had a very poor score on the mitochondrial profile 3 or 4 years ago, and, like you, would sometimes crash just from talking – I remember the unnerving muscle fatigue I’d feel in my throat and chest. So I started Myhill’s standard protocol of supplements, with the methylation cycle supplements too (Folapro and nasal B12 – which I had to ease into). And L-Glutamine & BCAAs at 10 and 15g/day, and Malic Acid. I’ve also been using transdermal minerals and using an FIR sauna as often as possible, and been on a very basic diet (brown rice pasta, chicken, a few vegetables). Whenever possible, sun exposure has been useful.
The thing is, I felt, and have felt (in many ways) no noticeable improvements over the course of the treatment. HOWEVER, I’ve been wearing a pedometer and logging my daily activity in an Excel spreadsheet, and overall there’s been a reliable trend of improvement in activity of about 0.7 steps/day.
This might not sound like much, but over 3-4 years, and without any worsening of symptoms, this has equated to about a 3-fold increase in exercise and activity capacity, and a significantly improved crash buffer.
The two things I’d say I’ve learnt of my experience are: 1) I don’t think anything’s been a magic bullet treatment (I think the complete picture of supplements and detoxing have supported the system as a whole, if only fractionally); and 2) Any genuine improvements have been extremely slow – too slow to notice, day by day, week by week. I’ve haven’t been doing graded activity – the additional 0.8 steps a day have been fairly organic, with wide fluctuations, day to day, but a steady window of activity improvement.
There may be a magic bullet treatment out there for me, but my experience has been more like trying to get out of huge debt. I’ve cut my spending (rest as much as possible) and added as many tiny extra sources of revenue as possible (vitamins, minerals, etc.). I’ve come to see CFS recovery as being in the same spectrum as an athlete recovering from heavy exertion or overtraining.
The other thing I’d consider is an environmental aspect. I sometimes wonder if (for me) living in a rural location may involve chronic exposure to something that’s slowed progress, as I know of severe cases that have resolved completely within a few years of moving to a different location/environment.
All the best with the future! Can never write enough on this without writing too much 🙂
Just a note on lyme – a negative test doesnt mean you dont have it, and often immunosuppressive drugs used in treatment of ME/ CFS are the worst thing that can be given if a Borrelia infection exists. Is there anyway you could aquire a suitable course of anitbiotics to see if you improve. This would be clinically indicative of an infection. Just a thought.
Congrats on the blog, H
I am really moved by your story. Although not as severe, I am a suffer and have been for over 30 years. One thing that has helped me so much, is to be aware of other issues that I have besides my ME/CFS. I discovered that I have sleep apnea and reactive hypoglycemia. Treating those two illnesses with my controlled eating and night mouth guard retainer (better than the c-pap) has removed those stresses from my physical load. I have always used the word “crash” to describe what happens to me. I also like to remember that I am like a glass of water, dribble out slowly or dump, either way when the energy is used up, I’m done. It helps me to monitor what I do to think of that word picture.
Hi,
I’m glad I found someone close to my age that is also suffering from CFS, and although my symptoms are not as severe as yours are, I was wondering if I could get some insight on some treatments that I have taken/am going to start? I just turned 20 and was diagnosed with CFS when I was 15. At that time I was not on any medication for it and was crashing all the time, waking up in tears after 15-20 hours of sleep and still feeling like I had been sleep deprived for weeks. Even showering, I would become so exhausted just washing my hair that I would faint (causing a lot of trips to the ER for stitches). Finally when I was 17 I got prescribed Adderall and it seemed like a God send, I was awake, able to work out and function like a normal person, but to almost the exact second it wore off, i’d be passed out where ever I was. After 3 years and multiple increases of the dosage, the side effects that come with the medicine are just not worth the benefits anymore. My doctor has prescribed me Florinef now and I’m a bit apprehensive because of the severe side effects that come with it. How was your experience on the medicine/would you recommend this? I also read that you have low Vitamin D and was curious as to what you do to try and increase this? I’ve been taking 50,00 IU twice a week of Vitamin D but every blood test I take still shows that I’m extremely deficient.
Best of luck and Stay strong.
Vitamin D deficency is one of the signs of TH1/TH2 imbalance, along with high allergic antibody production ie allergies
@Erin
I am sorry to hear that you are also suffering from this illness with onset at such a young age. Regarding the first treatment you mention, Adderall, I have not taken this drug but a similar treatment in Dexedrine. My experience is somewhat a microcosm of yours- After taking the drug in the morning, I would experience increased cognition and despite having a poor sleep the night before, I wouldn’t be sleepy. As you mention, the moment the drug wore off, you would pass out. I didn’t experience such an extreme side effect but rather I would crash. If I took ½ a tablet of Dexedrine at 9am, I would crash at approximately 5pm. One possible reason I theorised for this is the short half life of the drug.
Concerning Florinef, I was apprehensive to try this drug originally however eventually trialled it. It didn’t have any effect of my symptoms however it did extend my limits, causing me to do more without crashing. I have written a blog about this drug here: https://livingwithchronicfatiguesyndrome.wordpress.com/2010/07/27/fludrocortisone-for-cfs/ Do you know for what symptom or what based on what rationale your doctor prescribed you Florinef? It seems to be more effective for young patients and does help a subgroup of patients significantly.
My Vitamin D levels have been low without being deficient. From memory, I took 100,000 IU of vitamin D orally once a month (for several months) and my levels increased to high. On how many occasions have you taken the 50,000IU of vitamin D and has it increased your levels at all?
For what it’s worth, these are what I believe are the best treatments and lowest in side effects for ME/CFS patients (without knowledge of someone’s individual symptoms, although you have probably tried many of them already): https://livingwithchronicfatiguesyndrome.wordpress.com/2011/01/08/10-of-the-most-effective-treatments-for-cfs/ I do personally like all of the treatments you have mentioned due to somewhat improved blood test results/symptoms on me however all patients are different (unfortunately!)
All the best.
Hello friend,
It is amazing how similar your story is to mine.
My CFS developed when I was 21 years old. Prior to that I was also an energetic runner and cyclist. I am now 37 and have learned to cope over the years. I am under the care of Dr. Don Lewis & Prof De Meirle. My recovery has finally begun after all these years when I tested positive for Bartonella. Most of my symptoms were attributed to this and I am grateful that I can move forward although it will be a long recovery. I doubt I will recover fully but having hope gives you optimism and energy.
Good luck my friend – don’t give up!
Hi. Just wanted to add my thoughts/ experiences. I also got sick in my early twenties and am now 51 years old. My illness was sudden and profound, changing me from a normal, seemingly healthy young woman to someone whose life was all but over literally overnight. I was terribly ill the first five years especially. The disease seemed to ravage my body and brain at an alarming rate. I was often bedridden, in terrible pain with awful brain symptoms, a changed personality similar to someone who has suffered a brain injury, and so on. Photos from that time show me looking like an HIV sufferer in the advanced stages of the disease. I was frightened to sleep for fear of not waking up again. It was a nightmare, not only because of the illness and the devastating effect on a 23 year old’s life, but because doctor after doctor would not believe what they saw before them, preferring to make a diagnosis of “no disease present” on what were essentially worthless pieces of paper back from a lab. That probably was what scared me most really. I had previously thought we were living in a medically advanced age.
I have like most people tried everything I could tolerate in an effort to recover my health. The problem being that the illness caused an almost universal intolerance to drugs so side effects were intolerable and the drugs always had to be stopped. I did however experience a disease altering improvement while following a very strict diet to improve immune functioning (tellingly), combined with herbal remedies. That basically got me out of bed and able to function to a certain level, though I wasn’t cured by any means. My illness has followed the classic remitting/relapsing pattern since. To say that my life has not been easy would not quite express the reality.
Last year I decided to give valtrex a go. I was nervous due to my severe drug intolerance but decided I had nothing to lose and a lot to gain. So I started on 1 gram three times a day and was astounded by how quickly (and radically) i improved on it. This rapid improvement was followed by a few periods of feeling unwell on it for a few days or weeks at a time, but i would bounce back even better each time. It really made a huge difference to my overall health. I took a generic form of it (because the illness has of course rendered me poverty struck as well as sick) and was on it for 8 months until my cheapish source dried up. I had to go off it for three months until I could find an affordable source again. I was terrified to stop taking it because I feared the intolerable pain in my spine, neck and muscles (for one thing) would return but, in fact, I continued to heal in those three months with no regression. This truly astounds me.
I have now been back on the drug about 7 weeks. I wanted to continue taking it for the recommended two years ( because of the length of my illness I was told I will need to be on it longer) so have sourced it again at a bit higher cost. The first few weeks were fine on it though I am struggling with severe tiredness, sometimes nausea and headaches these past two weeks. I will persevere because I know that feeling unwell early on is a predictor of a good outcome long term and I do want to be cured of this illness before I die.
I would recommend giving Valtrex a go, though who will do well on it is anyone’s guess really. The problem is I don’t know whether you and I or anybody else has the same illness. That is the tragic legacy of “CFS”. I call my disease ME because that’s what I was diagnosed with pre CFS.
Hi there – so many of our stories are so similar – I looked at your symptom list and it was bringing back a lot of memories for me as I had most of your symptoms (sleepless nights and constant peeing drove me especially nuts!). I had CFS for over 6 years – never thought I would recover but eventually managed to do so after a big research project – it took a little while to recover from chronic fatigue syndrome, but having learned what I have, I do believe that many people can recover from cfs, even after years of illness – you can check it out on my website if you like – I would love to get your feedback – feel free to contact me if you like. I wish you all the best!
Best wishes,
Dan
I have what is undoubtedly ME. i do not have cfs- i have had this severely for over 30 years and am now 62yrs . what i wanted to ask was this . in the many posts etc i have read over the years about this terrible illness, i have not seen any that denote the symptoms of encephalomyelitis( what the E stands for ) as defined medically . these is no doubt i had something resembling encephomyelitis for a 12 month period at the beginning of my illness . and for me , the prednisone and antibiotics which are used to treat E are the ones i need to keep it under control . any comments??
dianne
Hi there my name is Bella and my son Charlie has had ME/CFS for four years after a horrific bout of flu in October 2008 when he was 11. We have tried many therapies in search of a cure to no effect and he remains bed-bound mostly, able to do a few activities but always with the payback! What a horrendous and unrelenting illness this is – my respect goes to all of you out there with your courage and spirit. I am grateful to read all the things we havent tried too, but fearful in case they make Charlie worse!
I have created a website called http://www.mespace.org for the sufferers of ME/CFS.
Until there is a definitive cure for this illness I thought as a Mum it would be nice to get people together and create a space for people to express themselves through art etc. I hope you will take a look and register. Wishing you all the best, Bella xx
Sorry to hear you have ME.
I’ve suffered for close on 20 years, I live a full busy life holding down a job in IT & having a family. It’s been hard at times with relapses happening from time to time. Initially I was a high school teacher teaching technology to A level but I contracted this unknown illness known as ME, the uk doctors I have seen have been useless to say the best, it’s not their fault, what could you do in such a short period of time you get with the doctor, it’s only after several visits do they start to join the dots. So never despair keep pushing.
As I said at the start I’ve had ME for about 20 years I suspect I will have it till the day I die, it’s a bitter pill to swallow knowing that, but you have to get over that and live life to the fullest when you do get a good day. A tip I learned early on,if and when people come to visit you be as positive as you can don’t linger on how you ache and the pain you have, because when they leave you will still be in pain, the only difference is they might not bother calling to see you again.
I eat most thing put in front of me, I avoid processed foods and take zinc and magnesium quite regularly, most medicines affect my system in undocumented ways so always watch what you take.
Be positive smile and wait for a good day to do just what you been wanting to do, live for the good times as they are always just around the corner.
Have a look at http://youtu.be/qBriPTFOtmY
I see that you are from Adelaide. I am also living here… having recently moved from Canada. Have had CFS for more years than I wish to count and am wanting to find a doctor here who actually believes in this condition and will treat me as such. A specialist would be fantastic. Just not too sure where to start my search. Any leads on where/who I could contact here in Adelaide? Any help would be greatly appreciated. Feeling a bit lost in all of this with having moved to a new place. Thanks for any suggestions you can throw my way.
Dr David Mitchel Waterfall Gully S A
Thanks so much for commenting Pam. I appreciate that. Feeling so lost in this journey while being in a new city.
I recently discovered your blog and am grateful for all the time you have putting into the details of your posts. My partner has had CFS for 8 years now and struggled as so many have trying to find things that help and how to deal with the symptoms, finding a doctor who believes and listens. Thank you so much for this. Your work is a true benefit for those seeking knowledge and understanding.
I haven’t read all the replies nor all yor blog posts but I can defnitely relate.. it’s been a frustrating decade full of uncertainties, severe illness and much suffering. I am sorry you have had to go through this at such a young age but I wonder if there is any ‘good’ age… keep looking for answers and wishing you well.
Thank you for your blog. I came down with CFS in 2001. I had no idea what was going on for many years. I just knew that I was really tired days or weeks at a time and ran a low-grade fever, but no other symptoms. I struggled with going to school and then working and falling into bed at night exhausted.
In the last few years, I had decided that I would live the rest of my life in a semi-twilight zone of foggy thinking and very little energy to get through the day.
A couple of weeks ago, after staring a course of Predizone for another condition, I felt great for one day. I attributed the energy from the Prednizone. However, the next day I was tired out again. I was so disheartened that I once again turned to my computer to search for an answer. I ran across an article that mentioned B12 injections for CFS fatigue. I jumped into the car and went to the drug store. I started taking a B12 sub-lingual vitamin supplement that afternoon. I figured it couldn’t hurt. I felt better right away and have had much more energy every day since then. It has been only ten days, so it remains to be seen how long this will last.
I am lucky to not have the joint pain which is associated with CFS.
I was comforted to read in your blog that each person’s symptoms were somewhat unique to them. So often I think that since I don’t have all the symptoms listed in CFS descriptions that I do not have the disease.
I hope that you have had good fortune in finding relief from your condition.
All the best,
Beverly Adams
Hi! I just found your blog and I am very exited to read more. First a quick question about Nimotop 30 mg. I read that you shared the tablets in four to get 7,5 mg. I also have CFS and my doctor said that I have to take the whole tablet (30 mg) because I couldn’t cut it into pieces, even if he wanted to give me a less dose. It also says so in the description of the drug that you have to swallow it whole. Did your doctor say something about that? I so easily get side-effects and feel scared to have to start on 30 mg. Do you have any information that could help me deside what to do. Have a great day!
@eva Most of the sources I have read regarding ME/CFS patients taking Nimodipine recommend that patients start on a small dose and gradually increase the dose over a period of weeks. Dr. Mason Brown has stated in the past that “If they (ME patients) are severely ill or have been untreated for a long time, they may need to start with a smaller dose than usual, in very few people, this may be as low a dose as an eighth or a sixteenth every third day.” Other sources such as the Canadian ME/CFS Guidelines mention that patients should start with 30mg. Probably the most abundant source of information about Nimodipine and ME/CFS can be found on the ‘25 Percent ME Group’ website here:
https://docs.google.com/viewer?a=v&q=cache:h9Ofq7wAuHUJ:www.25megroup.org/Information/Medical/SP%2520Nim%2520Article.doc+Nimodipine+me+cfs&hl=en&gl=au&pid=bl&srcid=ADGEESj7VxQdQwR4IN1BR_d7Kb_sPV9ahR9290nNr3guAenEHRcbKnKuNEZHTpV4K2s_ZEw8vUqGtnmlrcHm82eW9bjQfgWCId1xk88HiK4YO-5_JPyrU0WbIBZ6Fu1hza1VrFfq4_6Y&sig=AHIEtbQVI0p_1VmjOM1pm6yeWNIq8ls_VQ
You mention that in the description of the drug, one must swallow it whole. Perhaps this is as opposed to crushing it up or consuming it by some other method as opposed to cutting it? I’m not aware of many tablets that aren’t meant to be cut into smaller pieces, especially when they have a fairly long half-life. I’m not a doctor hence can’t give medical advice however I personally was also worried about side effects and hence cut the tablet up with a tablet cutter into 1/8ths. It may be worth posing your question on an ME/CFS forum to gain another perspective.
All the best.
Thank you cfssufferer for your quick answer, and for the link. I have been sick over 10 years but got the right diagnosis in februari this year. Before every doctor thought that I suffered from burn-out despite my fever, soar throat the whole time and getting worse all the time instead fo getting better. When I read about ME I became so happy because there were all my wierd symptoms. I continue to find out more about Nimotop, but I am now sure that I at least start with a lower dose. Thank you so much for everything you have put together! Take care!
Hi!
I have suffered from cfs symptoms for 15 years and I have been very sick in long periods. However, recently I found that gluten can, even if you are not diagnosed with celiaki, give you symptoms that are very alike those you get from cfs. So I excluded gluten and after 9 months I have become well (it takes a very long time to get rid of gluten in your body). Besides this, I have read that other people that were diagnosed with cfs became well after they quit eating gluten. Now to my point; you seem to be the number one expert in cfs but you have not mentioned gluten in any of your posts (at least I got no hit when searching) so I must ask you, have you tested to exclude gluten from your diet?
Regards
Ola
@ Ola. Thanks for the comment and kind words. I agree 100% with everything you have written. I have come across countless stories of ME/CFS patients whose condition has improved to varying degrees after eliminating gluten from their diet. Personally, on two different occasions, I have removed gluten from my diet for long periods. I have also removed dairy products and Fructose at various times. Unfortunately for me, these were to no avail. These elimination diets are something I believe should form part of a standard treatment protocol. I thank you for mentioning this as it is a treatment I have not written about but not from a lack of belief in its efficacy.
Regards,
cfssufferer
Hi CFS Sufferer, In late February this year, I met an associate of DR Raymond Perrin (Osteopath and author of ‘The Perrin Technique’) whose name is Ian Trotter and he is a qualified Osteopath and a qualified practitioner of ‘The Perrin Technique.’
I happened to mention the name of Dr Simon Wessley and Ian then proceeded to tell me about a recent CFS/M.E. conference, that both Dr Raymond Perrin and Dr Simon Wessley were in attendance. At this meeting Dr Simon Wessley said the following “M.E. is not a psychological / mental illness”. When Dr Wessley was asked to clarify he said “That I’ve never said that M.E. was a mental or Psychological illness”!
I just thought you might like to know this.
Also I’m starting to benefit from following ‘the Perrin technique’ and including taking the recommended supplements of: Vegepa E-EPA 70 capsules, (I started on the maximum dose of 8 capsules per day. Now I’m down to 4 capsules per day). I also take his other recommended supplement, Milk Thistle Extract. (I take the following dose: 1. 60 mg tablet per day, which is 50:1 equivalent of 3000mg of the following; Dicalcium Phosphate, Microcrystalline Cellulose, Magnesium Stearate).
I will try and keep you informed about my progress.
And may God bless you
Best Regards
John Paul
Wow… this is a crazy coincidence. I searched for this blog via google… didn’t even know it existed.
Read your ‘About me,’ and was amazed. I too am from Adelaide, SA, and my first CFS symptoms started in the middle of 2005 as well! I’m a couple of years older than you, (and female) but crazy! Same city, same year!
I won’t offer any advice/tips or anything… I know they come by the bucketload, but hope you get better over the years! 🙂
I just discovered your blog and I think it’s inspirational. I became ill at around the same age, but with less severity. I had read before that people had the illness with such severity, but had never been able to relate it to someone, until now. I am grateful my symptoms are not worse. I will most definitely follow your blog, and I hope for nothing but progress in the future. Thank you
@cstewart1252
Thanks for the kind words 🙂
Wishing you all the best in health.
Hi, just found you today! I truly hope you find the help you need and the health you deserve.
I live in coastal central Queensland and was diagnosed with CFS earlier this year, although looking back it’s been with me for a long time, probably since I was quite young, as I’ve always been tired but have had other health issues which may have masked the CFS symptoms. I’m now in my late 50’s and my symptoms do not keep me in bed, but they are severe enough to prevent me from working more than a day a week. Amongst other things, I get physically exhausted if I work more than that, but I get especially mentally exhausted and experience daily migraines if I overstep my threshold, which is very low. This is one of the ‘things’ with CFS isn’t it? I can walk down the street and no-one would know that I can only cope with two hours of physical or mental activity/concentration a day tops.
As far as drugs go, I take Topamax as a migraine preventer and Eletriptan to relieve migraines. Mostly I need to take the reliever daily.
One of the battles I currently have is with government support services. I have no partner, kids have left home, I live alone (not a sob story…I enjoy it!) but it means I have no financial support other than the day I work and very little government assistance. I am battling to get disability assistance but am basically being laughed at. Is anyone else having issues like these?
Thanks for reading,
Leonie
@Leonie I’m sorry to hear that you also suffer from this illness. Many other Australian ME/CFS patients have also struggled to obtain disability assistance. Probably the best place to gain information from those who have dealt with this issue is the Australian ME/CFS forums, found here: http://forum.notcrazy.net/
Wishing you all of the best.
Leonie, keeping hoping for disability to come through. I worked for the federal gov for years, but due to Crohns disease I finally had to quit. At present I have been dealing with arthritis in the knees and lower spine and chronic fatigues which is causing depression as I have ever known. Take all your supplements the b’s. and iron, and do anythings that you can do. while sittings down lift your legs up and down use the energy that you do have to do little things. You are doing very well. I pray with you for the disability to come, through ,as soon as possible. Your have no sob story, I am in the same position. God is a hearer of prayers, continue to let him hear yours.Please read, Isiah: 43:10,
Thanks for that. Will have a look at that site. Best wishes. Leonie
Hello cfssufferer,
If you still have hope and belief in the ability to cure CFS, you can find my story at:
http://forums.prohealth.com/forums/index.php?threads/here-is-what-worked-for-me-no-more-cfid-part-1.263320/
Not easy to apply and it takes a lot of hard work but i have not seen anybody escape from this CFID prison without paying a big price.
Wish you well,
Abdulrahman
Saudi Arabia
Hi have just read your blog, & just wanted to let you know I to have had ME/CFS for nearly 6 years now and the first 3 I was totally bedridden. Now I am part of the NSW ME society I assist where possible with phone support…. Obviously I am limited to how much I can do. I am so glad you have written a blog and I do hope that others read and respond. I so know what it’s like to be in that totally bedridden stage, and although I am really struggling I have improved enough to function a few hours a day…… However I do have active days where I might have visitors and afterwards crash and it’s always for an unknown period of time. Have you got friends and family who are supporting u in any way? Do you have some people who try to understand? I know it’s like living in a for better words dead body really, & we do grieve our former lives more times than others. Thank you for writing this I know this would not have been easy for you and I am so glad you have reached out & I have stumbled across your blog. I am not good with computers and I might have trouble finding this again? However know I am wishing all the best for all of us who are so ill out there (all over the world) there are scientists who have and are taking great interest and doing much research on this for all of us. I do hope I get a reply and find you again….. Rest, do the best at taking care of you & try and get as much help as possible….. I know even this is difficult on so many levels!! Healthy wishes and lets never give up!! Take care much rest. Fiona NSW AUST.
Hey cfssufferer,
I found this testimonial of a guy, seemed he had lots of similar symptoms with yours (including the head ones). He’ s improved a lot with chelation. Here is the link: http://www.livingnetwork.co.za/chelationnetwork/chelation-the-andy-cutler-protocol/testimonial-andy-cutler-chelation-protocol/
also you probably could not handle the T3 bc you need adrenal support first. The website “stop the thyroid madness” and “Dr Rind” explain why.
Thanks so much for sharing you story and blog!!! I’m 27, been basically bedroom ridden past 3 years (bedridden for 1.5 years), major head symptoms, very cold body etc, working on recovering. You were the first person I found who had symptoms similar to mine. Wishing you a complete recovery !!!
Ron
hi there, i just came across your site and am so sorry to read about your current state. i was curious if you ever tested for lyme disease as many of your symptoms also mimic lyme. i know it is not received well in australia but i know a few aussies i could put you in touch with who are treating for lyme and co-infections. hope you are showing improvements!
jennifer
@ jennifer
Thanks for the comment 🙂 I agree with you in that a lot of my symptoms overlap lyme disease symptoms. I sent my blood to the USA to be tested however it came back negative. Despite this, I have tried many of the recommended treatments for lyme disease to no avail (although almost all of the ME treatments I have tried have be fruitless as well!)
Cheers
Have you heard of the book “From Fatigued to Fantastic” by Dr. Jacob Teitelbaum? I am currently reading it, and it seems helpful. He also had chronic fatigue and cured himself, now he helps others do the same. This book is on Amazon, with others he has written, but this is the best one to start with. I don’t know if it will help, but it has helped me and I’ve just started. He has a website as well, in case that helps: http://www.endfatigue.com/
Best wishes to you.
@ molly
Thanks for the comment. We must think alike- From Fatigued to Fantastic was the first book I read relating to ME/CFS. My Mum stumbled across it by accident in a bookstore one day and bought it for me. I have gained many ideas from this book as well as my latest acquisition ‘Reviving the Broken Marionette.’
Wishing you all the best.
Has anyone here tired Cortisol for adrenal support? I have CFS, Adrenal fatigue (as shown in saliva test). I had a bad crash, Isocort no longer helped, I took some old Cortef I had from ealier treatment, and I bounced back a little bit. Now to find a good online pharm.
Hey everyone!! I’m a, 23 and have been suffering from severe chronic fatigue for over a year now. Didn’t find doctors any help, got a blood test, everything came back perfect except the test for a virus came back positive negative which meant I may have had Epstein barr virus or Lyme disease at some point. Cbt therapy was of no help to me either. The one thing that has got me from bed ridden to be able to now go for a small walk some days,get dressed and do small activities is Energy healing/ bio energy. And Kineseology has also helped me dramatically. But I whenever I over do it , I feel like I a knocked back again, I am not 100% yet. I feel like is this ever going to end. I am so down over this, I feel like I can’t cope with being so exhausted any longer, I had so many plans for travelling ect and now I am stuck at home on the couch every day. Please Does anyone on here have any other advise that I could try??? Thank you 🙂
@Guapa123
I’m sorry to hear that you are sick. Three years ago I wrote a list of what I believe are some of the best treatments for ME/CFS. This list can be found here: https://livingwithchronicfatiguesyndrome.wordpress.com/2011/01/08/10-of-the-most-effective-treatments-for-cfs/
Always consult with your doctor before starting any treatment.
There also exists several forums that you may already know about that discuss various treatment options for this illness. Writing on these/reading these can often be helpful to find what fellow patients are benefiting from.
Hoping you improve 🙂
Can you help with a good doctor in adelaide that knows about all this sort of stuff?
@Josh
I have emailed you a list of ME/CFS doctors From Adelaide.
All the best.
Hi – I was wondering if I could also please get access to this list (of CFS doctors Adelaide)? desperate for a doctor who can help…thank you
I’ve emailed you the list. Wishing you all the best.
Hi cfssufferer, I know you posted ages back but do hope you’ll see my post. I am also keen to know of me/cfs doctors in adelaide. thankyou for your help!
@Liyana
Hey Liyana,
If you leave your email in the comments area, I’ll send you the Adelaide ME/CFS doctor list.
All the best,
Is it possible to get an email of the docs please. My 13 year old daughter needs help.
@Zoe
I’ve emailed you the list of doctors. Wishing your daughter all the best.
Hi there, I’ve just come across your informative blog. I’m also in Adelaide and would be interested in finding a supportive CFS doctor. Could you please email me the list? (if it’s no trouble!) Thanking you very much in advance.
@ Art
I’ve emailed you the Adelaide ME/CFS doctor list. Wishing you the best of luck in finding a supportive doctor.
Hi cfssufferer,
Another Adelaide person keen for a ME/CFS doctor list. Many thanks for your help
@Mark
I’ve sent you the list of Adelaide ME/CFS doctors. Wishing you the best in health.
You may need to do a Saliva test for low cortisol. Canary Club has the test, see if it is available in your area. About $150.00 US. Then if you are low cortisol, you need to find a doctor that will treat using the Saliva Test, most in the USA won’t, you have to find a specialist who does this sort of thing, out of pocket.
Lyme disease is an STD just so you know, that is very difficult to find people who will treat it, it is sort of pushed “under the table” in some countries.
You need to know which one it is. Lyme is serious, get more testing, even if you have to go to a private clinic, for treatment, you might, you will have to google to find message boards for both of those medical issues.
Hi!!! I’ve recieved an email… Where I heard about a doctors list, that mayo help me with muy chronic fatigue.
Thanks a lot,
Denise!
I have had CFS for 15 years and at the age of 50, now feel I am never going to get better. I’m sitting here now out of my brain with exhaustion and so upset with comments my friends, doctor and children have made to me in the last few days going round in my head. My daughter (now 19) understands it but hates me having it and just calls me depressing (as does my 16 year old son). My friends just immediately dismiss anything at all I say about it as all they can relate to is that they’re tired (or exhausted) too. One of the hardest things about this hideous illness is that it is trivialised to such an extent. I would rather a name without the word ‘Fatigue’ in it, and if it is something to do with inflammation in the brain well I’d rather describe it to people that way. At least they can’t immediately dismiss it on the grounds they’ve had it themselves and it’s not that bad.
In terms of treatments I’ve found nothing that works as a cure (obviously we’d all know if there was a treatment!). Instead like everyone else I’ve had to manage it the best way I can. I’ve found Valium helps in the evening when I’m too overtired to sleep, a hot water bottle on my chest when the exhaustion hurts too much to breathe, and most of all Oxycodone (Endone), which is an opioid medication available from the GP only if you can claim severe pain (for me a neck CT scan and a specialist appointment was sufficient showing my vertebrae out of alignment). I do not have any neck pain at all and this misalignment is nothing out of the ordinary for my age. However this was the only way I could get the drug. I found this out by accident when I took one of my late partner’s tablets which he was taking for excruciating back pain (10 years ago now). When I first started taking it I had a very low tolerance to it, but now I can take a lot more without spinning out or feeling nauseated. I take one 5mg tablet in the morning, and half two or three times during the day. On bad days I’ll take a whole 5mg tablet up to three times a day. I’m not advocating this to anyone else, but just letting anyone who is suffering terribly from this condition that this drug does make a huge difference to your quality of life. With Endone I can hold down a part time job (on computer as can’t do anything more active), and have some sort of social life, though difficult.
Good luck to everyone on here suffering so much from this illness, and I’d be interested to know if anyone else has tried Oxycodone and if it helps them.
@SarahJane
I am sorry to hear that you also have this dreaded illness and for such a long period of time. Regarding the cruel and naive comments from those around you, I have personally found that the DVD ‘Voices From the Shadows’ changes the way people view this illness and thus treat patients. I completely agree with your sentiments regarding the misnomer ‘fatigue’ as relating to the term CFS. When I created this blog around 5 years ago, I used the term CFS in the title and other areas around this blog however I now refer to this illness as Myalgic Encephalomyelitis or ME. Thanks for the great info about Oxycodone. I’m sure that some patients will come across your comment and find it beneficial.
Thanks for the comment and wishing you the best for the future.
May I have list of doctors. Am a cf sufferer.
@Karen
I’ve emailed you a list of Adelaide CFS/ME doctors.
Wishing you all the best
Hi, also from Adelaide. Could you please email the Dr’s list to me?
I’ve sent you the list of Adelaide ME/CFS doctors.
Wishing you the best in health.
Good luck. I hope that one day you become well again or become far more well than you are at the moment. It is terribly hard and I feel very sad for you to be so young and so debilitated. I got sick at 18 too, just over 20 years ago now, and I have never lost hope that it is possible to get better from this. I wish you nothing but the best of luck with your healing journey. I really do hope you get better.
@Debbie
Thank you so much for the kind words. Thinking of you and hoping that you too prevail over this cruel disease.
Hello, I do not know if this pertains or not, not being anything close to expert, but some people with CFS may be helped by reading Dr. Ben Lynch’s site: http://mthfr.net/
I did find help at the Phoenix rising site, and now believe that poisoning is instrumental in my own CFS. Not outright poisoning, but the subtle variety consisting of toxic chemicals in food, drugs, vaccines, water and anything else I have ever come into contact with.
I have started using food grade diatomaceous earth (DE) in order to detox, but I am going slowly. We shall see, I am not up to doing the Cutler Protocol, though by all accounts it is the best there is. So far I sleep marginally better and I attribute it to the DE, again we shall see.
Bless all of you, I am praying for all to heal and find the correct path forward for each one, I hope you don’t mind.
Hi, I am better from CFS symptoms after 9 years of suffering with it, and I wrote a book on it, my hope is to inspire people and show them on how I did it. I tried everything under the sun. I ran a naturopathic clinic and tried all sorts of products and natural techniques. I am still editing my book and hoping to self publish soon. I was wondering if you were interested in helping me? I thought it could be good to get feed back from people who have been actively looking for things to help themselves and I can see you have. I released my symptoms with 4 techniques. ……. I guess what I am asking is would
you read my book and give me your feed back? Contact me any time. Thanks.
@Karyl
I am happy to hear that you have recovered! Thanks for the offer but at the moment I’m not really up to reading large amounts of words. I do wish you the best with the book though.
Hi all!
My name is Sorin, I am a 35 years old male. My health problems started in 2008 with a genralized strong rash on scalp (dermatitis?). In 2010 I got a very strong flu that left me laid in bed for a couple of months with painful enlarged lymph nodes at underarms and neck. In 2012 I got muscles weakness and extreme fatigue and was unable to work as before – the difficult part was that I was not able to focus on something. Neurological problems appeared in 2013-2014 when I felt some kind on “wires” on my brain and had problems in coordinating hands and feet. In 2014 appeared pain on left side of abdomen. In 2015 noticed kind of candida on my tongue and herpes on lips.
I went to dozens of doctors and did hundreds of tests – all good – NO DIAGNOSTIC! So I think I may fit well in the category of CFS – i.e people that do not have a precise diagnostic! This is extremely depressing because everyone else consider you a health person and ask you to work as you would be health. When you say you are sick – the reply is that you are just “hypochondriac”!
I started myself to do tests on my own because doctors just wanted to send me to psychiatry. So I did
Epstein Barr
CMV
Herpes-1 and Herpes-2
which seems “normal”.
and now I try to find money for Herpes-6 and Herpes -7
I read myself lots about this “disease” which in Europe is not recognized officially as a disease and saw that it has similarities with HIV/AIDS. So for a couple of years I did about 5-6 tests for HIV1 and HIV2 and all were negative.
I saw these 2 articles
http://www.immunesupport.com/92fal007.htm
http://www.fms-help.com/aids.htm
and started to wonder if CFS is not an undiscovered type of HIV virus? Since it can lead finally to very serious health problems, like AIDS, and there are documented cases of AIDS people that died being HIV negative.
Now, a diagnosed HIV positive has a treatment that promises almost a normal life with a life expectancy almost equal to healthy persons but a CFS (which could be also another sub-type of undiscovered HIV) does not have a diagnostic neither a medicament treatment. What could be the consequences in this case?
If CD4 cells decline in number for a CFS patient and they eventually reach 350 this is like an HIV patient going on treatment to avoid AIDS. There are cases of HIV negative with CD4 count decreasing!
What can this mean? CFS is a problem of imunity and seems it is like HIV (may be less aggressive) but finally acts in the same way.
What treatment can be applied on a CFS patient, HIV negative, with a declining number of CD4 cells?
Hi!
I found that is US there is dr. Learner Center that treats CFS according to a protocol
see below http://www.treatmentcenterforcfs.com/FAQ/documents/MECFSTreatmentResourceGuideforPractitioners.pdf
I am wondering if something similar exists in Europe, so CFS patients from Europe (like me) have a chance of recovery
Hi, I am hoping you could send me the Adelaide doctor list too. Thanks in advance.
@LKH I’ve emailed you the doctor list.
Wishing you the best of luck in finding a good doctor.
I cannot tell you how much your symptoms sound the same as mine. Mayo Clinic diagnosed me in 2010. However, last year through a series of fortunate events, I was diagnosed by Dr Lawrence Afrin (University of Minnesota hematologist) with Mast Cell Activation Syndrome (MCAS). The treatment is H1/H2 over-the-counter medications along with a number of prescription mast cell stabilizers (Singular, Xolair, Vit C, Vit D, etc). I literally have my life back. Yes I still crash once in a while, and I still have symptoms – but only 10-20% of what it had been and not every day. Basically when mast cells degranulate they dump histamine and heparin (blood thinner) and while host of other chemicals into the body. This can happen due to a true IgE allergy, a “mast cell reaction” (eg a filler in an over the counter medication), exercise (causing exercise intolerance), heat/cold, pressure, movement etc. And it can happen without a trigger. I would *HIGHLY* encourage you to look into this and pursue getting tested!
I know how frustrating and exhausting it can be to hear from so many people “Try this” or “Try that” but I’ve walked your shoes before and this suggestion is from the trenches so to speak. From a fellow warrior.
If you do pursue testing, I would highly suggest you either travel to see Dr Afrin in USA or at least call for proper protocol of lab samples – temperature affects the results in just minutes at the wrong temp.
Good luck!
@Lisa
Thank you so much for your comment. I am happy to hear that you have begun to get your life back! MCAS is certainly something that I will do some research on and read about now. I’m afraid that I can’t travel to the USA to see Dr Afrin- in fact I can’t even travel to my local airport! I will certainly do more reading though and work out the best next step for me. Thank again for your comment.
I have been suffering for many many years with CFS. I got very ill with an influenza virus in May of 1997. I was student teaching at the time and a year from graduating and I such vertigo, fatigue and a twitching (the virus had gone to my eye) in my eye called nystagmus. The vertigo (called labrynthitis) has returned many times over the years and the fatigued continued. I also developed around this same time severe gastrointestinal distress. I went to as gastroenterologist & I had a colonoscopy but it showed nothing. About a week and a half before Thanksgiving in 1998, I was feeling such severe exhaustion, swollen glands, fever, that I went to a doctor who was at one time friends with my parents since my mother for many years at the hospital where he got to know her as a young intern. I had even worked for his office when I was 19 years old but over the years it became an inconvenience to travel from where I lived in Queens, NY to go to Manhattan on the upper east side, if I needed a prescription for an antibiotic, I would have to make a trip to see him. But since I was getting worse I went to see him. He took blood work at the time. I was due to fly out to California to surprise my mother (she continued living there temporarily for her grandchildren after my sister’s breast cancer came back two years prior after having no recurrence for 8 years. She got breast cancer when she was 32, it returned at age 40, two years later she passed away. Anyway, back to when my health problems began: I was due to fly out the next day to California but I was so ill with a fever, achy muscles, debilitating fatigue I wasn’t sure I could make the flight. I had called the doctor for my blood results (I was told they hadn’t come back yet until the day before I left). He told me over the phone that I had tested positive for CMV and I had also gotten an intestinal parasite from my studying abroad for one month (when my gastroproblmes had started the summer of 1997). I was so ill when I arrived in California, I spent the time before thanksgiving dinner began and before dinner ended, sleeping. When my mom woke me up in the morning, I couldn’t move my body or open my eyes. My body was like a dead weight with debiltating exhaustion. I even had trouble speaking. I told her that I thought that I have mono because I had heard about it and this is what people told me it felt like. I had such trouble even walking a few steps before I had to sit down & I was getting heart palpitations. When I got back from Ca. a few days later, I had assist am disturbing symptoms. The lights outside hurt behind my eyes (photophobia), my left arm & shoulder were like a dead limb, useless to lift or use, I had to wash dishes with one hand, my right leg wasn’t working right. I had to concentrate to get it to walk properly (I had to walk my dog), I had trouble remembering the words for things at times. I couldn’t function or stop sleeping with no relief, no matter how much I slept. I called the doctors office the day I got back & spoke in a casual tone to the secretary & asked her if she could send me a copy of my recent blood tests. When I got them in the mail, it was highlighted where it said that I tested positive for Mononucleosis & Epstein-Barr Virus and well as Cytomegalovirus Virus. This doctor who has been invited to my parents home for dinners and who they were friends with, deliberately didn’t tell me that I have active Mononucleosis and EBV. I called his office & got him on the phone. I said to him “How could you have not told me that I have Mono. Do you know how sick I’ve been?” He was furious that I had a copy of my blood work sent to me & he said “I still don’t think you have mono.” It was sickening. By the next day I started getting bad continuous heart palpitations. It was so uncomfortable, even while trying to go to sleep, my heart would race in my chest. I couldn’t catch my breath & when I tried to talk on the phone to my mother, I…..would…….talk……like……this, having to catch my breath for each word. I
knew that the mono had effected me neurologically because of my walking and my arm and I had trouble even forming words at times. I went see an upper east side neurologist who was useless. He made no connection that all of these horrible symptoms began around the time I got these viruses. I had such trouble even taking the train to the city. I couldn’t climb the subway steps & was so shaky & having trouble breathing, I had to sit down on the steps many times. Then I went into the city to see my mothers pulmonologist/internist. He ordered a Holter monitor for me. It showed that I had an elevated heartrate, but he couldn’t tell me why. He would just look at me when I complained of the relentless fatigue (I had of course told him about the mono, EBV, CMV) and he said nothing that the papitations could be related to the mono. When I went back to him months later telling him that I was having trouble physically functioning, studying or reading or doing internship for school, that the fatigue was constant, he looked at me & told me to go see a psychiatrist. I had a form of those symptoms (thank GOD the heart palpitations stopped after a few weeks (they have returned as of 17 days ago). I have many more to write about my health but basically I have been housebound over 95% of the time since early 2011 & I have slept my life away for over 5 years with crippling, paralyzing chronic fatigue and many other progressive symptoms. Over four years ago I started getting the horrible & bizarre musculoskeletal pains (fibromyalgia), five years ago the pains in my head (around 1996, 1997 I started getting extreme dry eye & pain in the forehead part of my head. I went to manhattan Eye & Ear, was tested to see if I was producing tears (of course not) to lubricate the cornea & the eye but they couldn’t tell me why. After seeing several eye doctors I was finally diagnosed with superior limbic keratitis. I have since gotten permanent vision loss & scar tissue in my left eye as a result of this. I am bedridden most of the time & I didn’t make the connection until like 2012/2013 that when I do have to do anything physical like go food shopping (I can no longer for months now do anything like that or go anywhere) or even have to do laundry or even take a shower (I have to sit down in the shower) I can’t take care of myself or function at all. I made the mistake of commuting to Brooklyn on the train & then extremely long Avenue length blocks to get to a wedding a month ago. My health got progressively worse after that commute. That is when the inability to even do anything (I’ve had it before when I have to take the bus or train, where I can’t lift my arms to even use the remote. For two weeks after that I slept 22 to 23 hours a day. I am always behind in everything. I have years of paperwork of chaos. Unable to work for many years. My brother passed away when I was 10 years old (he was 18 yrs. old & had been in the hospital for 6 months with a family history we have of Ileitis (Inflammatory Bowel Disease). My sister passed away in Feb. 1998, both my parents are gone many years & I only have one cousin who lives in New Jersey and she has her own children, grandchildren. My friends all have their own families & don’t live near me. This is the first x I have ever reached out on a site like this. I will have to write the continuation of my health another time since I am
exhausted again. I don’t have the right doctor for me. I go to her because her office is attached to my apt. building. I
can’t physically make the commute back and forth to even go to a neighborhood food pantry once a week to get a bag of food. I have been to see her many times she has not helped me in 5 years, if I need a prescription for an antibiotic because of an upper respiratory bacterial infection she is helpful or for some other times I need a script, but she never told me I was at risk for getting fibromyalgia & when I went to see her I go to her because it makes the relentless intense chronic fatigue even worse if I have to go out and get somewhere. Even cooking or washing pots, pans, dishes is so draining. This is not a life. Ive lost years & I am alone all the time (except for a few visits to friends which I always paid for with my body & health afterwards for months). My big concern now is for a year and a half and even recently I have new symptoms. Throbbing Pain in my face, I can’t even get press in with my finger on my face, pain in the muscles, joints & tendons & a tightening feeling in my chest. The palpitations started a few weeks ago. It’s disturbing. I worry about cardiovascular disease or stroke risk because I cannot do any cardio exercise or any kind of exercise at all, it exacerbates the fatigue. A year & a half ago I started getting an intense need to urinate. I have had all the cognitive problems now chronically for five & a half years. I get confused easily, can’t read or concentrate, have trouble with short-term memory. Have a heaviness in my head, the “brain fog”. I have over the years fallen into one deep sleep
after the next. My body is useless. I look fine so my friends don’t truly understand my condition. I have to turn down invitations. It’s impossible & depression to turn on the tv & hear on the news what a beautiful day & what glorious weather was outside the day before (that has happened for almost 6 years now). I am no longer capable of taking care of myself. And now I recently went to read about CFS &
a tightness in the chest and heart palpitations & read that patients with this condition can die from this with heart failure & when I read about CFS/Myalgic Encephalomyelitis at rare diseases.org & have every single virus it says patients have including the HSV 1 & 2 & I have every single symptom I read & it said that it can result in death. I have never been a hypochondriac or read something & then think that I have it. For years the doctor next door has told me that what I have is all viral, the sore throats & swollen glands I’ve had for months at a time, I got a flu shot two years ago (I get one every year) & I got the most painful sinusitis (never had anything this severe before- my upper cheeks were swollen, intense pain deep inside my nasal cavity, complete blockage, first infection coming out & then complete blockage & dryness even with using a nasal spray. The intense pain when I would sneeze, blood came out. She told me that it was viral & gave me nothing but told me to put hard-boiled eggs in the freezer & take them out & put them on my cheeks. I hope someone writes me back. I have heard of a Dr. Susan Levine but i don’t know if she accepts my insurance & I can’t get to her office & make the commute there & back
without getting worse. I need help.
@Jodi
Thank you for taking the time to share your ME/CFS story. I am very sorry to hear all of the suffering that has been inflicted on you. Regarding your current situation, I can only make a few possible suggestions. In Australia, disabled patients are entitled to a disability carer that doesn’t cost them anything. I’m not sure of the laws in the USA but it sound like you may benefit from one that can help take care of you.
Another possible course of action is to arrange to have appointments by either phone consultation, skype or email- whatever is less taxing on you. Many doctors offer these services. It is unfortunate that you are in a different country to me because I’m oblivious to many of the systems in the USA. Another advantage of having a phone, skype or email consultation is that the doctor can be anywhere in your country hence you aren’t restricted to a nearby doctor.
I’m probably not the best person to give advice due to my ignorance of your countries medical system so it may be wise to copy and paste the story you have written onto the Phoenix Rising ME/CFS forums at this address: http://forums.phoenixrising.me/index.php
A larger number of patients on these forums are from the USA and can recommend doctors and systems in place that may benefit you.
Once again, thanks for taking the time to share your story and I’m sorry I can’t be of more help but please post your story on the aforementioned forums where I am sure many more people will be able to help you.
Hello Jodi, You are in serious condition. if you are interested in how i cured my CFS you can go to the Pheonix Rising website forums and read my postings. They are under the name Abdulrahman.
https://forums.phoenixrising.me/search/366201/
If you need more personal attention, request my e-mail address.
Mucus, tonsillitis… Have you checked out Chlamydia pneumoniae? http://www.Cpnhelp.org Dr Wheldon(DW) is a clinical microbiologist… I have a similar chest infection onset – slowly improving… Dr Wheldon’s protocol is gentler on the body… start slow… worth checking… M.pneumonia is another(I had that too asthma gone now and I was a severe asthmatic)
Cycling Valtex completely eliminated symptoms of my CFS.
I take 1g of valtrex twice a day(every 12 hours) for 4 consecutive days, once a month. I am a male and weigh about 180lb. ATTN, recovery mechnism is delayed, for the first 6-8 weeks I saw no improvement, and then I had full recovery. Also, I tried 500mg – it does not work for me.
Here is my story in greater detail:
My condition started with a flue and then continued with all the standard horrific symptoms. After two years of research and a couple of molecular cell biology courses, I narrowed my hypothesis down to Epstein-barr virus and HHV1 – high antibody titters kept on showing up in my bloodwork. Based on the information I could find, it seemed that EBV is suppressed by Valtres only at high concentrations while HHV1 is suppressed at both high and low concentrations. So, I started taking Valtrex – 1g ever 8 hours. After a couple of weeks i clearly felt that my body was suffering side effects from Valtrex. My stool turned white and I started loosing weight. I stopped after a month. And then, about 6-8(approximate) weeks since I first started (and so 2-4 weeks after I stopped taking Valtrex) I had a full recovery. Energy, comfort of being in my own body and sleep all returned. That was so odd! Recovery lasted about 6 weeks, and then I relapsed back into CFS. So, I started experimenting, and
to keep the long story short, I discovered that the minimum dose was 7 1g pills of valtrex taken consecutively at 12 hour intervals ( I take 8 just in case). Recovery is delayed by 6-8 weeks, and then lasts another 6 weeks. So, to keep myself from relapsing I started taking it every month as described. And I have been feeling well since.
I know Valtrex does not work for everybody, and I know that it works for some. I never tried Valcyte, I don’t know if cycling that in a similar way helps.
I should have not waited to post my experience. All of you who went through this horrific experience, please forgive me. I hope this works for you!
Do you think this would work on the combination of HHV-2, HHv-6, and EBV?
Hi,
I am sorry for your suffering, but your life does serve a purpose, so thank you for all of your efforts and blogging. I am not going to go into my story, but sadly its still going downhill. I just wanted to offer some additional things to look into. FMT (Fecal Microbiota Transplant). I will be doing that next week. My gut used to not be an issue also, but since gastroenteritis last summer, it has been an aggrivating side issue.
Chlorine Dioxide – Kerri Riviera autism protocol.
Helminth Therapy
Rituximab
Famvir +LDN +B12 +Phostidylcholine+D-Ribose
@Chris
Thanks for the kind words and treatment ideas. I’m sorry to hear about your illness and going downhill. I’d love to hear how the FMT affects you. I wish you luck with this treatment. FMT is something I would love to try but doesn’t seem to be an option for ME patients where I’m from. You have certainly listed some great treatments, if they don’t help me I hope they benefit someone else that reads your comment. I am a bit cautious about Chlorine Dioxide and this is personally something I’m wary of trying but I know the other treatments do seem to help a number of patients and I have dabbled in many of them. Once again, I wish you luck with the FMT and I hope you start to see your symptoms improving. Wishing you the best in health.
FMT is not an option for ME patients here, so I am having to do it without a doctor, not that they would be much help. I will let you know how it goes. There was a study in Australia some years back where they had a 70% success rate, but I don’t know what that means. However 20 years later 5 of 12 people they could still find were ME/CFS free. They are starting another study (in Norway I believe). If you want to do some investigation on DIY – visit thepowerofpoop.com
Hi, Thank you talking about your story online. I too was a long-distance runner, and greatly miss that and other athletic persuits (like off-road unicycling).
I saw that you had links to a bunch of other CFS blogs, and I was hoping I could get added to the list.
https://cfsishell.com
I’ll also add your blog to my list of blogs 🙂
Thank You!
Michael
@Michael I’ve given your blog a quick read and will look at it in more depth later. There is some great info on there! I’ve added you to the list of blogs on the sidebar. Wishing you the best in health.
Your story sounds very similar to what I went through. I might be able to help you. Please check out my website under section “T1AM hypothesis”. It will explain many things to you, including why T3 hormone made you so much worse (the same thing happened to me, it took me a long time to figure it all out and I’m just now publishing it online, nobody has ever made this connection before – primarily because this scientific information is so brand new. I have not yet published my ideas for treatment – because I only have one data point at this time – myself – but if you are interested get in touch with me personally through my blog or email and I will tell you what I think you should do to get better.
I live in Sydney Australia. I think I have CFS. Anyone knows from personal experience who is the best CFS specialist to go to in Sydney?
Hi, how are you feeling these days?
Regards Ron
Hi Ron, Thanks for asking. I’ve been much the same of late. I’m still struggling with the neurological side effects from the IV Rituximab I took in 2017. I’ve been reluctant to trial many new treatments since the Rituximab, mainly due to the fact that I seem to be more prone to side effects post Rituximab. How have you been faring?
Sorry to hear about the side effects.
I’m in desperate situation due to severe muscle loss and consequent loose
joints. I have very low energy. My dad is typing for me.
What is your activity level these days?
I’m sorry to hear of your desperate situation. If there’s anything I can do to help you, please ask. I hope you have a good physician. I have written about some of the more hopeful ME treatments here, although I don’t know how many you have tried: https://livingwithchronicfatiguesyndrome.wordpress.com/2016/10/15/treatments-for-mecfs/
Personally my activity levels have remained fairly static for the past 12 years. Any time I slightly exceed my restrictive boundaries, I crash fairly badly.
Wishing you the best in health.
How long do you sit, stand, walk per day?
Have you found any meds or supplements helpful?
Thanks
Ron
I try and avoid lying down as much as possible but depending on how sick I’m feeling, this is often unavoidable. Walking any meaningful distance other than around the house is also impossible for me as I will crash. Unfortunately I’m still in search of an elusive treatment that will benefit me. Since taking the Rituximab I’ve been more prone to side effects from even fairly innocuous supplements so I haven’t been trialling treatments as regularly as I once had.
Thanks for the treatments list link.
Best wishes
How much time are you in a vertical position per day such as sitting?
It varies from day to day. I try and sit up as much as possible although I’ve spent the last week lying down due to crashing.
I’m reaching out to you in regards to an exciting new CFS/ME study that has just launched.
We (at DxTerity) have designed a voluntary study of those living with CFS/ME with the goal to improve diagnostic tools and illness indicators. It’s our hope that, with only about 10% of people affected being formally diagnosed, we can improve the lives of those suffering from CFS and CFS/ME by getting them the diagnosis and proper treatment they need.
We are aware you are an advocate in this space and have a large audience of people who could greatly impact the future of CFS/ME via The CHROME Study. Would you be interested in participating in the study and/or helping us recruit people by letting your followers know of the study and its potential impacts? If you’d like to participate yourself, you can enroll at the website below. If you might be interested in helping us promote, we would love to chat with you about it!
Here’s some information for you while you mull this over:
Study website (enroll here) – http://www.thechromestudy.com
Parent company website – http://www.dxterity.com
Facebook page – https://www.facebook.com/The-Chrome-Study-Shape-the-future-of-Chronic-Fatigue-Syndrome-from-home-104706865046304
Thanks for considering us! We hope to hear from you soon.
Best,
Cara (and the entire CHROME Study team)