It has been a lengthy period since my last blog. This entry will attempt to outline my ME related journey from the past 6 months.
23 and Me
Despite its name, ‘23 and Me’ doesn’t refer to Myalgic Encephalomyelitis but rather ‘me’ in the pronoun form. ‘23 and Me’ is essentially one of a number of genetic testing companies that provide an individual’s health and ancestory information from a saliva sample. I had this test performed earlier in the year. Some useful information can be gained from the test but to determine ME (Myalgic Encephalomyelitis) related information, one must dig deeper and insert the data provided into alternate websites such as Genetic Genie.
For the record, I have homozygous mutations for; COMT V158M, COMT H62H and CBS C699T. I also have heterozygous mutations for VDR Bsm, VDR Taq and MTRR A664A. The meaning of these mutations is quite detailed and beyond the scope of this hopefully brief blog entry. I am pleased that paragraph is behind me and I have now finished explaining 23 and me and ME regarding me!
Eclectic symptoms
My ME symptoms have been fairly static for several years until early 2013. I then experienced a range of strange symptoms that persist to this day. Since January 2013, I have experienced nausea on approximately 30% of days. I have also sporadically vomited since early this year. Another novel symptom I have experienced is gagging, often after brushing my teeth, smelling certain odours or coughing. Insomnia has also emerged during this period and I require prescription medication to gain sleep on 2 nights per week (average.) Something akin to Restless Leg Syndrome has also developed although this has occurred more rarely. The final novel symptom that I’ve experienced has been pulsing legs. This happens throughout the day but more frequently in the evening and is in rhythm with my heartbeat.
For 3 years I have experienced migraines/headaches on the same day each week (originally Mondays but now Wednesdays) despite changing all of the variables I can think of e.g. food, routine. The aforementioned eclectic symptoms have correlated with my migraine day however often fall on another day. I should also note that my previous blog entry explaining my reaction to Nimodipine, may not have been caused by the drug as I began gagging 1 week prior to the drug. There are many details and nuances contained within these symptoms however I will gloss over them and keep this explanation brief. In summary, I have been referred to a Neurologist and will see them in October.
Tablets
As a result of the eclectic range of symptoms mentioned above, I stopped all of the tablets I take daily for my ME, in case a tablet was causing these symptoms. In the past, I had crashed if I had gone for two days without Fludrocortisone, I lacked energy if I stopped D-Ribose for a short period and overall felt that each tablet I took contributed something to me maintaining an ME equilibrium. It was therefore surprising that stopping every tablet recently didn’t result in a deterioration of my ME. On the flipside, my strange symptoms persisted however I was pleased to find that I wasn’t as dependant on these drugs as I had initially thought. I have since restarted most of these drugs as they are designed to maintain good general health. The exception is Fludrocortisone, which I haven’t taken now for four months. My reasoning for this is that Dr Cheney believes long term use of Fludrocortisone can exacerbate ME symptoms.
The supplements I have started to take since my last blog entry include Butterbur, CoQ10 and Vitamin B2. The rationale behind these is that there exist some studies indicating they are beneficial in preventing migraines. I have taken CoQ10 in the past on many occasions and B2 at a lower dosage in the past.
ENT
I saw an Ear, Nose and Throat Specialist during May 2013. Since the origin of my ME, I have coughed up excessive amounts of mucus and experienced significant nasal mucus discharge. This has involved me going through 2 boxes of tissues daily for many years. I had a cynical approach going into the ENT appointment as I had read many anecdotal reports of ME patients having no relief of sinus symptoms after seeing an ENT. The ENT determined from observation and a CT scan that I had severe nasal inflammation and one nasal chamber was very narrow while the other was large. He prescribed me the Corticosteriod, ‘Avamys nasal spray’ which has reduced the number of tissues I go through per day from 2 boxes to 1 box. I have also been referred to an Allergist.
Dermatologist
I had a suspect mole on my thigh examined by a dermatologist in June 2013. The dermatologist cut it out and sent it to the laboratory. It came back as an ‘In situ melanoma.’ This means that the cancer fortunately hadn’t yet grown into the deeper layers of the skin. I had all of the skin around the melanoma cut out and now sport 20 stitches in my thigh. I opted to avoid any injected adrenaline during the surgery as I was uncertain as to its effects on my ME. It is somewhat ironical that I developed a melanoma as my ‘23 and me’ genetic testing determined that I had a significantly lower risk of getting a melanoma than the average person in my lifetime. Also my indoor and sedentary lifestyle would be conducive to avoiding melanomas. This should however be coupled with the fact that Australia has the highest rate of skin cancer in the world and prior to my ME I was an outdoors and active person.
In a previous blog entry here I documented the various rashes and spots that have emerged on my body since the onset of my ME. I questioned the dermatologist on the rounded spots located on my finger and toe joints. He explained that they are called knuckle erythema and suggested two causes. The first is that they were caused by rubbing against something however they are located on my feet and hand joints, not just in one location. They also emerged soon after my ME began. Finally, I haven’t done any activities that would have caused them. The second suggested cause for the knuckle erythema was an auto-immune disease which seems more likely to me, based on the timeframe of the emergence in tandem with the ME and autoimmune interconnectedness.
High Dose Thiamine
There exists a plethora of ME treatments that I have lined up and ready to trial. The one prohibiting factor for testing these treatments involves the weird symptoms I developed earlier this year. If I experience a side effect from any treatment I begin, it will be difficult to distinguish it from an extra symptom related to those I developed earlier in the year.
There is some discussion online at the moment regarding the treatment of high dose vitamin B1 (thiamine) as a potential Fibromyalgia and ME treatment. It is not seen as a panacea but like many other treatments, it may help some patients. A small study of three Fibromyalgia patients (http://www.ncbi.nlm.nih.gov/pubmed/23696141) found that all three experienced an improvement of symptoms after taking high dose thiamine. Subsequently, other ME and Fibromyalgia patients have since trialled high dose thiamine with mixed results. Patients tend to have an individual B1 dosage that is different to the dose other patients respond to. Finding this optimum dosage without exceeding it (and potentially experiencing side effects) is the challenge.
I decided to begin taking vitamin B1 as is widely considered to be low in side effects and is normally well tolerated. My daily dosing structure involved starting with 250mg and increasing this dose by 250mg every 3 days. I am up to 1000mg at present and yet to notice any symptomatic changes. The maximum dose I will trial (barring side effects) is 2000mg. Some articles about B1 treatment can be found here and here.
Conclusion
It has been a unique few months with my novel symptoms overshadowing my ME symptoms and ME treatments. I hope to report on my high dosage B1 trial and hopefully write about the other treatments I plan on starting in my next blog entry.
Hello. Nice to hear from you in Australia. If you remember, I am Valerie from Canada who is writing the book about ME/CFS for the general public. We are making progress. I hope to be finishing up Stories of Others this month; and then move back to my own story and explanatory sidenotes. There ended up being a lot of great blogs, original stories, and articles to choose from. Too bad so many people have these experiences to talk about, right? I just thought I would update you on this project, and also to ask you what you learned about the VDR genes. Are those the one Trevor Marshall speaks about in the Marshall Protocol as the vitamin D receptor glitch which he treats? How interesting. You may want to check that out if you have not. Can you tell me if this was difficult or costly to test? How will it affect your treatment choices? Was it difficult to put together a meaning to the genetic differences? Maybe I will do something like that as well if it would help in some way. Please keep me updated. Best, Valerie Free Date: Mon, 5 Aug 2013 08:29:08 +0000
@ Valerie
I’ll send you an email 🙂
Wishing you all the best
I love all the detail, although it’s sad we’re all in the same boat. 😦
Hey, this may or may not help.
If melatonin seemed to help then you might want to give Agomelatine a try.
You could have a mix of depression and CFS, they are both conditions tied to the immune system and its dysregulation. Overactive cytokines within the brain lead to exaggerated pain and sickness behavior in response to ordinary infections, which are not avoidable.
http://www.ncbi.nlm.nih.gov/pubmed/23622958
Agomelatine (PM), methylfolate (AM), methylcobalamin (AM). All good.
While are you are at it you might also want to try Amla fruit in tablet form from Banyan taken in the morning.
I’d first try the agomelatine under the wing of a physician of course. Be sure to clear it with a physician since you seem to be doing massive polypharm. From personal experience, agomelatine doesn’t combine well with antihistamines or memantine / NMDA antagonists.
You may also want to get your hair mineral levels checked to be sure you aren’t being poisoned. Some ppl got lead and other toxic mineral buildup, the sort of thing that could possibly cause fatigue. This is a good blog btw, esp for someone that chronically doesnt feel well. Good luck and keep blogging.
I was very happy to find this blog about CFS. I have been experiencing symptoms since 2002. I was finally diagnosed with CFS by Mayo Clinic in Rochester this past year. I have also developed Choroidal Melanoma in my left eye and have received radiation plaque therapy. In 2001 I contracted the Epstein-Barr Virus and have since gone downhill. I am now only a shell of the person I used to be. I do not get a lot of support from the doctors in my area as they do not seem to know very much about my condition. So, I spend my time researching the internet for some kind of hope. Thank you for posting this blog. I do not feel so alone anymore. TK
@Tanya
I’m sorry to hear of your bad health luck. I hope things turn around for you and the future is brighter!
Tanya, I was at the Mayo Clinic in Rochester about a year before you. They also diagnosed me and I’ve gone all of these years with the same experiences you have had with doctors. I can’t believe they can’t even find a cause for this illness. They need to at least rename it!! 👍
Also, I had thought of this after watching your youtube video….
You claim you get fatigued as you step outside and walk around that garden, probably a variety of pollen is out there, have you ever considered it may be an allergic response? Try getting the blood Elisa tests done, skin tests and RAST arent very accurate. You can do sublingual immunotherapy based on the allergens of your region if this is the case. Allergies can take many forms including fatigue. I would very much like to see your condition turn into a success story. It would be a great victory against whatever ails you and make everyone following your blog happy too.
Dont underestimate the effects of pollen on the immune system. Many nations have weaponized pollen as a biological agent. Just search “yellow rain” I’m not making it up. But most likely it may be a normal allergic response leading to fatigue from exposure. It doesn’t hurt to see a competent allergist. I doubt your house is getting sprayed, lol.. but pollen is always around,
@no name
Thanks for the comments! I probably should have expressed myself less ambiguously in the video. In hindsight, I should have said “walking any measurable distance causes me to fatigue.” If I walk around the house too much I will fatigue and crash as well- it is unrelated to being in the garden.
Your comment is very topical, as 2 weeks ago I saw an allergist and had an skin prick allergy test performed. The results came back negative for all allergies except dust. I had a significant allergy to dust. I will write more about this in my next blog entry.
All the best.
HHS awards contract to Institute of Medicine to redefine ME/CFS
The outcome has already been established by precedent through the rulings of the IOM PANEL on CFS for the last 10 years.
They have thoroughly examined the evidence and in each ruling on CFS has been the same. To overrule their statement of facts based on the evidence, would mean that they would be require to rescind all the evidence and statement of facts for each report’s conclusion.
Would a court of law proceed in such fashion? No! Neither will they.
Vernon has betrayed the CFS Patients and put them at extreme risk.
Do you expect that the IOM will overrule their own 10 years of rulings on CFS?
Ask HSS Sebelius: Do you believe that another IOM Panel on ME/CFS based on the fact that they have consistenly ruled by findings of facts over the last ten years including the latest 2013 VA IOM report, that CBT/GET are the most effective therapies for CFS and that immunotherapy and antiviral therapy are ineffective with regards to treatment?
This is their rulings from 2001 to 2013 from all evidence considered:
“Chronic fatigue For Gulf War veterans who meet the criteria for diagnosis of syndrome (CFS) CFS, the committee recommends:
• use of cognitive behavioral therapy and exercise therapies
because they are likely to be beneficial;
• monitoring the results of studies of the efficacy and
effectiveness of NADH, dietary supplements,
corticosteroids, and antidepressants other than SSRIs;
• because immunotherapy and prolonged rest are unlikely
to be beneficial, they should not be used as treatments;
• SSRIs are unlikely to be beneficial and are not
recommended unless they are used as treatment for
persons with concurrent major depression; and
• treatments effective for CFS should be evaluated in Gulf
War veterans who meet the criteria for CFS.”
This is what the IOM thought about CFS and ME in January of this year in their 2013 Report on Chronic Multisymptom Illness
(formerly Gulf War Illness). The IOM accepts without question a 2001 work by Wessely’s crony Michael Sharpe claiming ME is a “functional somatic syndrome” (psychosomatic). The IOM believes ME is just another name for CFS.
“The common thread among the terms is that symptoms experienced by patients cannot be explained as pathologically defined, or organic, disease (Sharpe and Carson, 2001). Such syndromes as irritable bowel syndrome (IBS), chronic fatigue syndrome (CFS, also called myalgic encephalomyelitis), and fibromyalgia often are included in this group of unexplained illnesses, as are chronic unexplained symptoms that do not meet case definitions for IBS, CFS, fibromyalgia, and other functional
somatic syndromes that have specified diagnostic criteria
http://thoughtsaboutme.com/2013/10/16/opening-pandoras-box-pandora-cozies-up-to-iom/
http://www.occupycfs.com/2013/09/
http://www.cfstreatmentguide.com/blog.html
http://www.cortjohnson.org/blog/2013/09/03/definition-coup-feds-trample-cfsac-farm-consensus-chronic-fatigue-syndrome-definition-suspect-group-action-needed/
Spread the word;sign the petitions
Hi, can you drop me an email i’d like to get in contact with you. I also have CFS 29yrs old.
Hi I noticed you’ve tried alot of treatments. I wanted to suggest maybe looking into heavy metals- especially mercury toxicity.