I must preface this blog entry with another apology for my lack of writings in recent months. The fact of the matter is that using the computer causes me cognitive impairment, headaches and a next-day migraine. If the frequency of my blog entries was graphed against the state of my ME, a direct correlation would be found- That is, if I blog often, I am feeling slightly healthier than if I don’t blog for a period.
Dexedrine
An Olson et al. study (found here http://www.ncbi.nlm.nih.gov/pubmed/12515836) resulted in dexamphetamine improving the fatigue severity scale scores in 9 out of 10 CFS patients while only 4 out of 10 patients in the placebo group experienced improved fatigue severity scores. Dexedrine may improve; cognitive problems, decrease fatigue and increase energy. It may also increase certain neurotransmitters that may be low in some ME patients. Dr. Teitelbaum is an advocate of Dexedrine believing it may increase energy and blood pressure. Dr. Goldstein believes that one third of CFS patients will benefit by taking stimulants (he recommends amphetamine salts.)
There are risks associated with taking Dexedrine such as the risk of addiction if used for extended periods of time. Some of the potential side effects listed are also off-putting. Dr. Goldstein warns that if certain neurotransmitters are too low in patients, stimulants may increase CFS symptoms.
My experience in taking Dexedrine was quite short lived. After a night of interrupted sleep, I took ¼ of a 5mg tablet (in the morning.) My cognitive abilities were noticeably improved throughout the day and I was more alert than normal- After an interrupted sleep, I am typically very sleepy during the day however the Dexedrine remedied this problem. Every day I meditate for 1 hour and on the day I took the Dexedrine, my meditation was far more focused, easier and effective than normal. The downside of the Dexedrine hit me at approximately 5pm when I experienced a crash. I speculated that the Dexedrine was wearing off when I crashed as it has a very short half-life. I have not taken Dexedrine since due to the potential crash it may cause.
Azithromycin
Azithromycin is an antibiotic with immunomodulatory and antiviral properties. The macrolide antibiotic family (of which Azithromycin belongs) is effective against a broad range of bacteria-many of which have been linked to ME. Azithromycin is able to cross the blood brain barrier with some ease and it hence has the potential to fight CNS infections. It also has anti-inflammatory properties. Dr. De Meirleir and Dr. Nicholson are both advocates of Azithromycin, using it quite frequently with some success. A Vermeulen et al. study (found here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1562448/) discerned that 58 out of the 99 CFS patients studied had a decrease of symptoms while taking Azithromycin. The antibiotic was most effective in patients with low levels of Acetylcarnitine. It should be noted that none of the patients in the study reached remission status as a result of this treatment. Azithromycin may exacerbate liver function impairment and can be fairly expensive.
My experience with Azithromycin is ongoing as I have been taking it for the past 3 weeks and will continue to take it for the next 3 weeks. To date, I haven’t noticed any effects.
Testosterone
I will attempt to keep this Testosterone summary short. As a male, with borderline low testosterone, I applied testosterone cream daily for approximately 1 month and had HCG injections weekly for 4 weeks. Over this period, I experienced frequent crashes and an exacerbation of many symptoms. It was arguably the worst month of my ME. I also lost my appetite (probably due to the HCG injections.) The blood test showed that after 1 month of testosterone treatments, my testosterone was moderately lower than when I began the testosterone treatments. My doctor speculated that my body had ceased to create endogenous testosterone due to the exogenous testosterone applied to it. I’m not feeling well enough at present to detail the potential positives and negatives of testosterone (it can replicate viruses including XMRV-whatever that is) however I have ceased the treatment and am now back to baseline (how I was feeling before trialling the testosterone.)
Conclusion
Ideally, I would like to write in detail regarding each treatment however due to my current health status, this is not possible. I have a handful of other treatments that I will commence over the coming months and I will blog about any effect these treatments have on my ME.
Man I HATE how this works – I just entered a long comment, it asked me to log in, but the time I’d managed that my comment had disappeared.
Thanks for your report.
1. You can fix your computer problem in the way that I am doing. My screens and computer are fitted into a set of shelves with a door. The front of the shelves face away from me (the desk). The computer and screens stick out towards me through cut-outs in the rear of the shelves. The door means the ‘cupboard’ is partly sealed, apart from the gaps around screen, computer and cable entry points. I cut a large hole in top of shelves and fitted an exhaust fan so that the air is drawn into the shelves around the screens and computer, and then extracted and blown through a duct to the outside air. I haven’t finished this yet but similar system worked wonderfully for the large TV and music system that was causing me severe problems. Only problem is the slightly industrial looking exhaust pipe into the wall.
2. I’m on Clarithromycin 2x and Ceclor 2x and this has helped a lot. One doctor suggested replacing the Clarithromycin with Azithromycin 3x per week. So much lower dose. I haven’t tried this yet, as you say it’s expensive, but wondered what does you were taking.
3. My testosterone used to be high. A doc suggested if I took exogenous testosterone this might lower my overall levels in teh way you describe. I tried it but went mad and angry so had to stop. Same effect as when I tried DHEA.
Let’s know about the Azithromycin and good luck with the rest of your experiments.
Julian
@Julian
Thanks for the comment and all of the useful information 🙂
I’m currently taking a 500mg dose of Azithromycin. I will do some research on Ceclor and Clarithromycin to see if they may benefit me.
All the best.
Your 500mg Azithromycin is daily I assume? As mentioned, my doctor was talking about 3x per week which seems strange.
Cheers
Julian
Yeah, the 500mg dose of Azithromycin I’m taking is a daily dose. From what I’ve read, there seems to be quite a degree of range regarding ME patient dosing by doctors. Many doctors prescribe 500mg 3 times a day while on the other end of the spectrum, one doctor prescribes 250mg 3x a week. The length of treatment also varies fairly significantly between doctors from 6 weeks to 4 months.
All the best.
Good information. Unfortunately it takes sometimes takes a lot of trial and error without different medications before you find the right blend for you.
Hello there,
I just stumbled across your blog today and was nearly moved to tears. I was diagnosed 5 years ago with chronic fatigue after they ruled out cancer and cardiac abnormalities. To date, while I have a diagnosis, I have no lab work confirming it and no one has offered any type of treatment whatsoever when they even believe that there’s something wrong. In fact at first, I didn’t believe the doctors because I thought chronic fatigue was a fake diagnosis, just something to call this problem they couldn’t find. Through the years, as I’ve read more now I know that it’s real, and I know I have it.
Anyway, because of this history of no one helping me, I had to find things on my own. Your condition is more severe than mine, but I was once in a state that sounds very similar to yours. You could see every lymph node in my neck, with the two main clumps the size of golf balls. I couldn’t do anything besides lay in my bed aching, spitting up tons of saliva and mucus, filling up 2-3 plastic bags of used tissues a day from blowing my nose. My tonsils and lymph nodes were so swollen that I eventually couldn’t eat solid food. I was put on large doses of prednisone that did nothing. At this point, I’d also had 3 courses of different antibiotics that did nothing. Desperate for anything, I tried taking EmergenC (has 1000mg vitamin C, plus massive amounts of different B vitamins). Amazingly, after the first dose, my throat felt just slightly better, and being obsessed with checking my lymph nodes, I noticed the swelling instantly went down just a little bit. Over the next few hours, the swelling went back up to where it was, so I took another dose thinking the first time was a fluke, and again, the swelling mildly reduced. I kept doing this, taking between 4-5 doses of the stuff every day. It was like taking two steps forward and one step back with every dose. After a week I noticed a huge difference! I was floored. While it took me years to recover from that episode, and I am not completely back to who I was (I was a runner before as well), I am functional. In fact, I just had a baby. I have found for me that once I get to the point where I can no longer sleep, or get restful sleep, I am in the danger zone of having another major episode/flare. I have to take drastic measures to cut out work, school, what have you, in my life and take the vitamins religiously (except for when I was pregnant, or now that I’m breastfeeding – which has caused some big flares once again) and then I eventually climb out of the hole. I also have to consume an enormous amount of calories. I used to drink meal replacement drinks in addition to trying to eat as much as possible. It’s hard for me to physically eat when I have a flare as it tires me out. Currently, I’m in another flare, trying not to fall into the hole, and I’ve stumbled upon another vitamin that helps – vitamin A. I randomly tried carrot juice because it’s high in calories, easy to consume, and I figured, hey, what the heck, it’s a vegetable. My husband hates the stuff, and while I hated it the first time I tried it, I noticed I got the same “instant high” that I had gotten from the vitamin C. Ever since then, I **crave** it. I can pound down an entire glass of it no problem. I did some reading and found out that vitamin A is recommended for people with CFS due to aiding with immune function.
Besides diet and supplementation, I just tried acupuncture. I hate needles, so it was a big deal for me. Let me tell you, I have never been more relaxed in my life after it was done. If I start on the upside of this flare, it will be because of the acupuncture. I had gotten to the point where I wasn’t sleeping, and although I’m still sick, I’ve had a week of getting a good night’s sleep every night since the acupuncture and I’m already feeling it.
I’ve only read a couple of your blog posts, so you may have already tried these, but thought I would send it your way just in case. They aren’t quick fixes, but if you’re a fighter, they are weapons in your back pocket. My heart aches to think of you so sick for so long. I know how bad it can be and it’s such a miserable time.
I forgot to add that I subscribe to the whole systemic inflammation hypothesis. I’ve also been diagnosed with endometriosis via surgery, interstitial cystitis (IC)and IBS – all caused by or intimately related to inflammation. I mention IC because you talked about frequent urination. That is a hallmark symptom of IC as is chronic lower back pain. My IC is well controlled with diet, but there are medications out there for IC, mainly antihistamines. As antihistamines affect serotonin and sleep patterns, I decided to try diet first before considering medications. I will take benadryl for acute IC flares and it significantly reduces my IC symptoms almost immediately.
I really think all of these syndromes, conditions, and diseases are symptoms of some larger problem, but nonetheless, at least they each seem like another puzzle piece.
@EvRose
I am sorry to hear that you also suffer from this illness. I am interested in the fact that you also had excess nasal mucus discharge as this symptom was my initial symptom for some months hence I elevate its relevancy. There are very few patients online coughing up, spitting out and blowing mucus in such extreme quantities. I get through around 12-15 boxes of tissues (each box contains 230 tissues) per week. I’ve tried high dose C and the spectrum of B vitamins both orally and intravenously to no avail, although I am glad these treatments positively affected you. I’ve also tried the other treatments you mention; vitamin A, vegetable/carrot juices and acupuncture without any affect. Thanks for the comment though and wishing you all the best 🙂
It was that symptom that really drew me to your blog as well (and in general, I’m also young-used-to-be runner who had to drop out of school -26yo). I told my husband it was like you were describing my life. In general, the saliva/mucus symptom is sort of a “beginning of the end” for me, so it made me think it’s viral load related. Details, in case you’re interested:
It happened to me during two different episodes: the first triggering event I described earlier, the second a bad flare. The first time it happened, I had already been feeling very crummy for a couple months (extreme fatigue, physical weakness, sore throat). The doctor had no idea what was going on and kept telling me to just “run through it” if I could (marathon training at the time), and then be sure to get extra rest and sleep. All my lab values (complete blood count – standard tests really) came back normal, even though my lymph nodes were enormous by then. Finally, when I could no longer function I developed the severe respiratory symptoms of excessive salivation and snotty nose. I was going through about the same amount of tissues as you and it lasted several weeks. It was pure hell and maddening. I got stomach-sick (just like your beach post) because I kept swallowing saliva. I started chewing on paper towels when I put two and two together. It’d chew on a papertowel for about 30 seconds to a minute, spit it out, and then get another one. I’d blow my nose about every minute as well, but my nose was constantly congested to the point where I had no taste whatsoever. I’d wake up in the middle of the night, choking on my own spit and mucus. I really thought I might die, and the scary part was that I almost welcomed it. I was so miserable.
The second time it happened I had gone past the stages of blossoming fatigue and weakness and had to keep working, so then it again got to the point where the excessive salivation started up (it came first both times, then the mucus). I was in nursing school at the time, sitting in a pharm class when my teacher told us about atropine. Sometimes they use it at the dentists to decrease salivation. It’s a mouthwash. I tried to go and get some at the doctors, but I made the mistake of telling him I had chronic fatigue, so all he did was roll his eyes, run basic labs, and then proceeded to tell me there was nothing physically wrong with me when they came up normal. So I self medicated with antihistamine (benadryl) and used a strong mouthwash several times a day. It helped get me through it. That time it only lasted about a week, but I again became bedbound and that lasted several more weeks. Doctors seem to think it’s allergies, as if it’s no big deal. It makes my eye twitch when they say that.
I should add that the first time it happened, I had confirmed infection of EBV (for the second time in my life) and it became severe. The second time it happened, I think I also had re-developed EBV, but that’s uncomfirmed. I’ve been tested before in the exhaustion/physical weakness/sore throat stage, and the mono spot is negative (which I know is somewhat nonspecific, but drs told that the more specific tests are just too expensive to run…). I think that by the time I start salivating, it’s a sign that I have a high viral load. It makes sense as usually you get respiratory symptoms when a virus is near its peak, and also infectious.
On a random note, it would be really interesting if you had some sort of survey on here for things that interest you… like what types of people (types of ME/CFS/FM) have certain symptoms and when. You have quite a few people visiting your blog and you might get some interesting data.
Thanks for the well wishes and sorry to hear that vitamins weren’t effective for you. I hope you can find something that works. Your persistence and not sure of the word… but acceptance … is extremely encouraging. I’ve given up so many times and felt as if maybe I am just crazy. I’m now starting to realize that people need to be educated about this illness, so I’m not hiding it anymore. Keep on fighting; I know I’m one of many who are cheering for you.
@EvRose
Thanks for your detailed reply 🙂
So much of what you wrote resonates with me, partially through empathy and partially through my own similar experiences. It is so very poignant to read of someone whose illness has taken a similar trajectory at times to mine as I’m all too aware of the pain that accompanies these symptoms.
Regarding having a survey on things that interest me on my blog- this is a very relevant and insightful suggestion. Approximately 2 years ago, I considered making a new website where patients could input symptoms, ME/CFS criteria fulfilled and an evaluation of treatments. This would (with appropriate numbers) provide a statistically significant appraisal of treatments and possibly identify trends and hence eventually effective (or likely to be effective) treatments for certain patients. I eventually abandoned this idea due to the sheer workload it would require and number of patients a survey like this would require to be significant. Since then (from memory) Phoenix Rising and mecfsforums have taken a similar path in creating large scale surveys evaluating treatments.
Thanks again for the comment and wishing you the best of health.
I have been following you blog for a while. Excuse me if you have already tried this, it’s a bit hard for me to read all you have written, but the only thing that I have had help with is “Zostrix” cream.
It is capsaicin cream.
I use the lower content capsaicin cream although you should try both strengths. It is supposed to be for fibromyalgia pain only. Yet I find it improves sinus and migraine pain.
I only found out by accident that it got rid of my sinus pain as well as improving th muscle pain. If you need any more info write to me. My email is chaiya6ATyahoo.com (replace AT with @).
I recommend trying it by rubbing it all over the back wherever it hurts. Stop if there is any swelling (rare). You would probably need help to rub it in as I need help, it is tiring.
What really got to me is your writing how you got ill. It was nearly identical to me, the way I slowly carried on school till it got worse was so similar. I wish I had the presense of mind to write it down at the time. The internet did not exist then when I first got ill in the same way in 1992. I got it after EBV. I also have a lot of mucus with this but it never gets in my lungs or throat. It’s only out of my nose and sinuses. That symptom is not as severe for me. My own severe unusual symptom is the fat that I can only digest about 11 foodstuffs without terrible digestive pain and constipation.
I strongly recommend the Zostrix as a try. You’ll know after only 1 -3 applications if it will work.
Hi, I wrote before but my post disapeared so apologies if this is a repeat.
I just want to suggest “Zostrix” cream for sinusitis pain. It is really indicated for muscle pain and can be bought over the counter but I found out by accident that it gets rid of sinus pain too. I might be wrong but it is cheap and seems a low risk thing to try. It can only do harm if you are allerguc to capsaicin, the ingrediants in red peppers which is it active ingrediants. At worst it can just make you skin burn a bit till you wash it off.
Yours is my favourite ME blog.
@Rachel Thanks for the info about Zostrix, I read about a similar product with the same active ingredient several months ago are trialled it. It did sound promising and I was hopeful it may ease some of my facial pain however unfortunately it didn’t alleviate the pain. I do appreciate you mentioning this treatment though as it does seem to be effective for a number of patients. Cheers
Hello CFSSuffer,
I had chronic pain and fatigue for thirteen years and was finally tested with Igenex western blot for Lyme in 2011. Though mildly positive on a number of bands, (maybe not a good “positive” according to Centers for Disease Control) my doctor and I agreed to start Lyme treatment based on symptoms and history.
I am feeling much better – up to 80% functional these days.
Please take a look at my blog: http://Lauraslymerecovery.wordpress.com. I have my detailed treatment protocol listed there. Perhaps something there can be useful to you.
Best wishes,
Laura
i just re-found your blog and want to say thank you for writing it. it is a big help to have your thoughts and experiments with treatments — all online! reminds me of the Better Health Guy who, like you, tries everything. i, too, try everything. we all want so badly to be well. the whole thing makes me so so so sad. but it also heartens me to read your blog. thank you again for taking the time and what little energy you have to write it. it is really appreciated. also, a big thanks to your parents for supporting you with this illness. — rivka
Dear CFSSuffer,
A group of mothers with children who have CFS posted your blog on our Facebook group. I wanted to let you know what a CFS specialist at Johns Hopkins has found and what also helped my daughter improve. Many ME/CFS people have POTS (postural tachycardia syndrome) and also Orthostatic Intolerance. These are not being addressed in the adult population I have noticed. POTS causes your blood to pool in your legs, hands and hips. Your heart begins to beat faster in order to pump the blood up to the heart and head. While standing, you are running a tiny marathon. Then, if you try to exercise, you crash the next day from pure adrenal fatigue.
The cardiologists in America are trying beta blockers. It doesn’t work for everyone, but helps a keep crashes down. It has to be a low dose. My daughter is on 10mg of Nadodol. She takes it at night, helping with sleep. Dr.’s have also found that POTS people have tachycardia at night, interrupting sleep cycles, which makes fatigue even worse.
Next Dr. Rowe at Johns Hopkins is doing a study on children with CFS. He found that the majority had hyper mobility issues. Their joints were loose and causing the tendons and nerves to trap themselves. Causing the joint pain and muscle pain many CFS people feel. Also increasing brain fog and cognitive impairment. He has a program that he talks to the physical therapists about, one called it nerve gliding. This reroutes the nerves back into place, then strengthening the muscles around each joint. This helps with blood flow, lessening the POTS symptoms. No more pain, no more popping of joints.
Once they do all this maneuvering, adding the beta blocker, exercise can begin. A very careful start, only five minutes on a bike. Working on increasing the muscle volume. Also pilates for improving core strength. It took my daughter a year and half to improve. She is now 16, has spent many a year barely out of bed. She became sick at age 9. Now she is planning on attending school more often and can do normal teen activity without crashing or feeling sick. She still has to balance things, drink lots of water, eat salty things, rest when she needs and exercise her joints muscles daily.
Dr. Rowe is onto something. He and my daughter both spoke to Health and Human Services during the ME/CFS advisory board. I truly believe that this is caused by a virus. Hyper mobility is also linked to EDS (Ehler Danlos Syndrome). Not everyone with EDS gets CFS. But perhaps it is a genetic trigger, a time bomb that a virus caused. Any virus. They are finding more and more with the Genome project about viruses causing illness that isn’t related.
I hope some of this information will help.
Michelle Gustavsson