A Chronic Fatigue Syndrome/POTS Patient Responds to a Multiple Sclerosis Drug - What Does It Mean?

Discussion in 'General Discussion' started by Cort, Mar 30, 2016.

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Before 2002 Rachel owned two businesses, had boundless energy, worked out with a trainer five mornings per week, sat on boards, chaired fundraisers and had a full social calendar and was rarely sick. She was able to keep her only health issue, periodic tachycardia, under control by using the valsalva maneuver.

    One would never have thought that this dynamo, a decade later, would be spending 20 hours a day in bed. The idea that a healthy, active person can get knocked down by chronic fatigue syndrome (ME/CFS), of course, is nothing new. In its general outlines Rachel's story is no different from that of many with ME/CFS

    There is one important exception - an exception that could give us a clue about ME/CFS - at least her ME/CFS. About 8 years ago she took a drug that caused her fatigue to virtually disappear for about six weeks. It wasn't ME/CFS drug, though; it was a multiple sclerosis (MS) drug.

    The only reason she got the drug was that she had been misdiagnosed with multiple sclerosis. Ironically, she responded much better to the drug than MS patients do. It was as if the drug had been made for her disease - not MS. Unfortunately, she developed an allergic reaction to the drug and had to stop it.

    Let's take a look first at Rachel's story and then at Copaxone

    Rachel's Story

    Rachel's autonomic nervous system and orthostatic intolerance issues showed up first when she began experiencing dizziness and blurred vision on early morning hikes during warm days.

    By 2005 increasing fatigue had caused her to reduce her work week to 3.5 days. Her symptoms were strange and hard to understand; her legs were itchy, she had numbness in her big toes, she blacked out a couple of times after workout and was drinking copious amounts of water.

    In 2006 she moved and opened up a new business with her husband but her decline continued. Synthroid reduced her fatigue a bit in 2007 but a cold triggered pins and needles sensations that remained and then a prolonged dizzy spell hit sent her to the doctor.

    An MRI showing lesions on her brain left her with a diagnosis of multiple sclerosis. A subsequent MRI suggested she did not have MS, but then a third MRI and a spinal tap with an MS specialist indicated that she did have MS. (Spinal lesions only showed up intermittently for Rachel and her spinal fluid showed no oligoclonal bands.)

    She started on an immune modulating drug used in MS called Copaxone.

    On Copaxone

    Rachel's response to Copaxone confused everyone. Copaxone is supposed to reduce disease progression in MS but in Rachel it did more than that; it seemed to reverse her disease progression. Rachel's severe fatigue seemed to melt away under Copaxone and she began exercising again. Both she and her husband were astonished at her improvement. Unfortunately about six weeks later after welts appeared on her stomach she was advised to stop the Copaxone.

    Her fatigue returned. She was began experiencing unremitting tinnitus, intermittent eye-twitching, copious eye watering as well. In 2012 after upping her dose of Synthroid - which made her feel better - her health worsened.

    Off Copaxone

    Blood sugar issues came to the fore. A couple of times after skipping meals she became confused and unable to speak. Eating cupcakes sent her into such severe tachycardia (heart rate 220) that an ambulance was called.

    More strange symptoms - vision symptoms ("bouncy" eyes, double vision, light sensitivity), muscle spasm in her arms, legs and lower abdomen, anxiety, brain fog and insomnia ensued. Extreme light sensitivity left her unable to look at a computer screen A test indicated that she was taking too much synthroid and she reduced her dose.

    In 2013 she realized that she had severe blood sugar problems and changed her diet accordingly. She began to heal a bit and her anxiety and insomnia abated.

    In 2014 after spending 3 months on grain, dairy and sugar-free elimination diet plus CoQ10 supplementation - her heart issues were all but gone and her brain fog was much alleviated.

    Her fatigue soared, however, when she began taking injected methylated B-vitamins. Her dosage was reduced but the fatigue continued and ultimately, contrary to her doctor's advice, she stopped taking them.

    In 2015 determined to get to the heart of her blood sugar problems she saw an expert in the field who put her on a 72 hour fast. She felt fantastic during the fast but a 4 hour glucose test indicated she had an atypical case of reactive hypoglycemia; her insulin remained steady while her blood sugar dropped.

    A New Diagnosis

    In May she woke up with the room spinning and it continued to spin for two days. Searching on the internet Rachel realized she might, in fact, have postural orthostatic tachycardia syndrome (POTS). About ten years after it all began she took a tilt-table test and was diagnosed with POTS/ME/CFS and her MS diagnosis was dropped. (Later her endocrinologist told her many of her reactive hypoglycemia patients also had POTS. )

    How sugar is contributing to her orthostatic intolerance isn't clear but the fact it does is clear. When Rachel cheats and has a cookie the best she can hope for is stomach bloating, an increased heart rate and shallow breathing for up to 2 hours. The worst is what she calls a complete brain shut down.

    She always had an organized approach to her health, and over time she has improved. She eats clean organic low-glycemic foods free of gluten, dairy, sugar and other common allergens such as soy. (Her endocrinologist said her diet is "damn near perfect".) She eats promptly at 9am, 12, 3 and 6pm. Her activity level is roughly the same each day and without exception, she goes to sleep at 10pm to help keep my circadian rhythm in check. She takes the same supplements at the same time each day as well.

    Much of the brain fog and the anxiety she began to experience in 2013 is gone but she continues to be debilitated by severe physical and mental fatigue, dizziness, migraines, light headedness when standing, numb toes, confusion, blood sugar problems and vision issues.

    She still cannot tolerate the light from her laptop well and her extreme heat sensitivity remains. She has very limited tolerance for stimulus (good or bad) of any kind, including mental and physical exertion.

    An avid exerciser pre-ME/CFS she is determined to get some exercise and does brisk walks daily but then spends 20 hours or more a day in bed.

    The Copaxone Question

    After all this she looks back to the dramatic 6-week renaissance in health she experienced while on Copaxone. Her response - a dramatic increase in energy - was so atypical that her doctors didn't know what to do with it. They had never seen that in their MS patients.

    MS typically progresses stages in which the disease relapses - gets worse - and then remits (gets better). Copaxone reduces the number and severity of MS flares or relapses. In Rachel's case, however, Copaxone didn't appear to just slow the progression of her disease - it reversed it. That completely baffled her doctors.

    That six-week period remains easily the best period of health she's had in the past fifteen years.

    Like many drugs the mechanism or mechanisms by which Copaxone is somewhat mysterious. In general Copaxone is believed to shift the population of T cells from proinflammatory (Th1) to anti-inflammatory (Th2) cells. It also may act as a decoy which results in the immune system attacking it instead of myelin cells on neurons.

    Copaxone's effects on B-cells are intriguing given Rituximab's success ME/CFS in several small trials. Both drugs may be having the same general effect - reducing inflammation - but in different ways. Rituximab is believed more effective at changing the composition of the B-cell populations while Copaxone is more effective at altering cytokine production.

    One study suggested that Copaxone increased the secretion of IL-10, an anti-inflammatory, by B cells. Given the reduced levels of IL-10 sometimes found in ME/CFS, that's an intriguing finding. In MS, on the other hand, Rituximab reduces the level of pro-inflammatory cytokines. Copaxone also appears to be able to reduce B-cell migration to the CNS.

    The Simmaron ME/CFS spinal fluid study could be instructive. It found that MS and ME/CFS were immune exhaustion disorders but in different ways. Could Copaxone be better suited to ME/CFS than MS?
    In general the evidence suggests that Rachel's success with Copaxone may have come from its anti-inflammatory properties. If you have an idea why Rachel did so well, or if you've tried Copaxone or a similar drug please let us know in the comments section.

    The Immunomodulation Question and Chronic Fatigue Syndrome (ME/CFS)

    What do we know about immunomodulatory drugs and ME/CFS? We know that at least some patients have reported dramatic successes with Ampligen, Rituximab and now Copaxone. That, of course, suggests that other immunomodulatory drugs - and there are quite a few of them (Abatacept (Orencia), Adalimumab (Humira), Infliximab (Remicade), Etanercept (Enbrel), IVIG, methotrexate, azathioprine, 6-mercaptopurine, cyclosporine, and tacrolimus) - might be helpful indeed. Getting access to them, however, is another story.

    People diagnosed with autoimmune or autoinflammatory disease may be able to cycle through these drugs them looking for what works but ME/CFS patients don't have that luxury. Despite Rachel's dramatic success with Copaxone now that her MS diagnosis has been retracted she is ironically, not eligible for similar drugs.

    We need more than anecdotal reports of improvement or recovery, though, to get access to these drugs. We need research results and treatment trials. A strong Rituximab result, would, of course, change the dynamic of this disease significantly. An Ampligen approval would do likewise.

    The bigger and better the studies we get the better our chances of getting those kinds of results. It's perhaps notable that two of our best studies to date; the Lipkin/Hornig blood and the Lipkin/Hornig/Simmaron spinal fluid studies ended up with similar findings.

    Over the next year the Nath project at the NIH and Ron Davis's severely ill study at the Open Medicine Foundation will dig deeper into the pathophysiology of ME/CFS than any studies before them. Both will take parallel paths: both will look wide and deep in the immune and other systems in a smaller number of patients, and then attempt to validate their findings in a larger number of patients.

    This is the kind of organized approach to ME/CFS which may ultimately give ME/CFS patients access to immunomodulatory or other therapies that can help.
    Last edited: Mar 30, 2016
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  2. Who Me?

    Who Me? Well-Known Member

    Did I miss what her original diagnosis was?

    EYAKLLE Guest

    Severe pots is ME ?
    Is it really ME??
  4. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I think her first diagnosis came in a couple of years after she started to get sick and it was MS.
    GG likes this.
  5. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    All I know is that the two are commonly found together.

    EYAKLLE Guest

    I doubt it. The wrong cohorts are studied. Or the right cohorts are wrongly studied. Or both are studied and one corpus of evidence is made to overlap with the other. Patients dont know what they re being diagnosed with. Those being diagnosed with ME when they dont have it. Very sad state of affairs.
  7. Who Me?

    Who Me? Well-Known Member

    But then it wasn't MS? Was it ME, POTS? That's where I'm confused. Multiple dx's? And the MS drug only worked for a few weeks?

    I'll have to try to read it again.
  8. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    One of the things I found really interesting in Rachel's story were her blood sugar and orthostatic issues - both of which I have to a much milder degree. Her endocrinologist said POTS was common in her reactive hypoglycemia patients. Why would that be so? I have never heard of a connection being drawn between the two before.
    Jenny Horner, Merida and Who Me? like this.
  9. Who Me?

    Who Me? Well-Known Member

    @EYAKLLE You seem to be on this bandwagon that everyone is being misdiagnosed with ME and that only we are in a sad state.

    Medicine in general is in a sad state, plenty of others get misdiagnosed everyday. I'm not sure why all of the sudden you are suspicious of everyone with an ME diagnosis. The wrong cohorts, the wrong study, everything seems to be wrong.

    Show us where you get this information?
    h3ro and Veet like this.
  10. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    It was a misdiagnosis. The lesions in her brain were transient and her spinal fluid did not have oligoclonal bands so - except for her symptoms - it doesn't look like she was ever a really strong MS patient. When she took at tilt table test she found out that she had ME/CFS/POTS... and her MS diagnosis was dropped.

    The MS drug worked very well for 6 weeks until she began developing what looked like an allergic reaction to it.
    Who Me? likes this.

    EYAKLLE Guest

    It s like a Stephen King horror movie.
    It s just so messed up.
    From Fatigued to FaaaantaStic passing through potstastic ! With a bit of endo/immuno here there n every cytokine n chemokine-where n-way for all of you n as u want it,3 years in then 3 years out take your Columbia selfie pic folks with your favourite researcher. CBT/GET/PACE for the masses for all your cfs pots ailments like complaints !! 5 million pounds for the Pace psychs.... Red chilly pepper research from Columbia. As bad as each other. Useless codswallop all round. An injustice to real ME patients. And dangerously misleading for those that are misdiagnosed with CFS believing they have ME. Tragic.

    Lipkin knows Mikovits n Ruscetti got the RV.
    De Niro needs to know that his son could have an XMRV-like Mikovits/Ruscetti Virus,at least be able to explore it if in that subcategory or at least learn related lessons if not.

    Sure is a bad world out there. A lot of people lied for far too long with the oldest tricks in the book. Sad.
    Last edited by a moderator: Mar 30, 2016
  12. Who Me?

    Who Me? Well-Known Member

    You missed my point, or I didn't say it correctly. Why are you on this crusade that everyone is misdiagnosed? . You are saying everything is wrong, cohorts are wrong, studies are wrong. It seems that that is only your opinion. Back it up with something.

    You edited your post after my comment. The only thing your original post had was the first 3 sentences.
    Last edited: Mar 30, 2016
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  13. Rachel Riggs

    Rachel Riggs Well-Known Member

    Hi there - Rach here! :)

    I first became sick in 2003 and received a diagnosis of MS in December 2009.

    I had very few - maybe only one - lesion on my brain and it eventually went away. BTW - there is no definitive diagnosis for MS - just as with ME/CFS. There are a few more tools involved such as MRI's and spinal taps. Yet MS is treated as a legit disease, while ME/CFS is not....

    As for the reactive hypoglycemia - I believe it's related to the lack of GI motility that can result from POTS. And also, as the newest criteria for a CFS diagnosis includes orthostatic intolerance - I feel it's safe to say CFS and POTS are either one and the same - or at least go hand in hand.
    Jenny Horner, sue la-la, Veet and 5 others like this.
  14. Rachel Riggs

    Rachel Riggs Well-Known Member

    Hi @EYAKLLE - My MS specialist (a Harvard trained Neurologist) feels that 25% of those diagnosed with MS actually have been misdiagnosed and have CFS instead - particularly those who experience fatigue as their primary or most troubling symptom, as I do.

    @EYAKLLE, I don't think Cort's point, or this story, is at all about a misdiagnosis. Rather, it's about the drug Copaxone and my accidental discovery that it may work for CFS. It is similar to Rituxan in its action yet considered relatively innocuous - whereas Ritan is recognized as a bit more dangerous. It's a promising treatment option that needs to be explored further...
    Last edited: Mar 30, 2016
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  15. Who Me?

    Who Me? Well-Known Member

    @Rachel Riggs Welcome. I wanted to tell you that you need to put an @ in front of the person's name if you want them to get an alert. See how your name is bolded? @EYAKLLE will not get an alert the way you did it.
  16. Rachel Riggs

    Rachel Riggs Well-Known Member

    Oh sure - like on Instagram - thanks for the scoop!
    Who Me? likes this.
  17. GG

    GG Well-Known Member

    Is this "article" avaialbe as a PDF?
  18. Who Me?

    Who Me? Well-Known Member

    @Rachel Riggs
    I bit more dangerous? Lol? I wouldn't go near Rituximab with a ten foot pole, and I'll try pretty much anything. For those of us with chronic infections this is the last thing we need.

    And it won't be available for who knows how long? 4-5 more years? I sure am not waiting around for them to figure this out.

    You mean the Copaxone needs to be explored further?

    @Strike me lucky add this to your list of things to try.

    EYAKLLE Guest

    Yeah,rituximab looks off target
  20. GG

    GG Well-Known Member

    Can you or she be more descriptive about this? I'm interested in what this might mean? So the lesions where there initially, went away, and then came back?