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ME/CFS and the Magic of the Canine Factor
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Hello - my first post & question

Discussion in 'General ME/CFS Discussion' started by Thomas, Aug 26, 2013.

  1. Thomas

    Thomas

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    Hi everyone,

    I am Thomas. I am in my mid 30's from Ontario, Canada. I have been reading the PR website and forums since getting ME in November of 2011 after a flu shot (and some other neuro-immune stressors). I have been diagnosed by Byron Hyde here in Canada, and Dr. Bradstreet in Atlanta. More on that in a moment...

    I will try and keep my story brief, but basically I have always been a high functioning and motivated person (sound familiar), outgoing, social, fun etc...but also tended to be a little weaker in constitution than most people. Always been underweight (EDS or hypermobility anyone?) and always battled IBS even for 15 years before my acute onset. I can be a little anxious and depressed also. But overall life was fine and I was getting things done. That is of course until the virus (or cytokine storm from the vaccine) hit and my world changed.

    The acute virus lasted about 2 weeks before i made a decent recovery. A week later the ME symptoms arrived (exhaustion, brain fog, tinnitus, insomnia, night sweats, neuro stuff, crushing fatigue etc...). Was off work for a few months then felt a bit better with a little help from my parents and went back to work part time. Luckily i am in sales and can set my own hours. I had to move condos (twice) which was a major stress and something i shouldnt have done but i had a mold issue and it was necessary.

    Anyways, year 1 wasnt that bad actually in hindsight. I feel like i was able to do more. The brain fog was manageable and i was balancing things nicely but still not doing much. Consulted with Dr. Hyde who ran some tests - I had a normal MRI but a slightly abnormal SPECT that he wants to repeat in October. I consulted with Dr. Bradstreet who i did GcMAF with which was a major let down and made me worse i think. That was all in year 1. Around this time last year though the brain fog "spaced out" feeling has become much more intense. I hate it. I went from insomnia to hypersomnia as my brain just doesnt seem to want to wake up. I am on amitryptyline for sleep and 100 mg of wellbutrin without major differences. But this spaced out drunk feeling is very troubling and i am concerned as it is the one symptom you do not want getting worse. Like who cares if i get a little muscle pain, but cognitive symptoms are scary. Where does it end?

    I am now approaching 22 months of ME and fatigue, brain fog, and mental exhaustion are worse than ever. Like i just cant use my brain without feeling extremely overwhelmed. Can this symptom improve over time? I want to be able to think again and make mental decisions.

    It is strange, year 1 i was full of optimism and Doctor shopping and eager to try treatments and i was feeling like i could beat this thing. Now almost 2 years in i feel deflated, and exhausted, i have lost weight and muscle mass and i am overall feeling not nearly as optimistic as i was. I hope that is just a temporary down and that i will regain that vigor. Can anyone relate? I hate this apathy.

    As for tests all my blood work is fine, i dont seem to have any oxidative stress and while i have IBS my genova cdsa is pretty good so my gut seems fine on paper but not in reality, my vitamin d is normal and my immune markers are normal. I have mycoplasma but thats a dubious diagnosis, lyme might be an issue but that's a long and lonely road, my shoemaker markers (c4a, vegf, tgfb1, msh etc) are not normal at all so i am looking into detox etc..my c3a is normal though.

    Dr. Hyde told me that the brain has a natural way of healing itself but it takes time. He said he feels i will make substantial improvements but i seem to be declining. So not quite sure. A lot of the flu like symptoms are gone but i dont see that as improvement. I want my cognition back...desparately. I should also add that depression has become an issue as well as my cognition gets bad i get really down about it but i am working on that. Anyways, this is my first post and it seems like a lot of people get better in time. David Bell (who i know) told not to listen to people out there, that improvement and even recovery is very possible, even after years of illness. But i have to have patience. Any advice would be welcomed! But only nice advice i am terrified of ME horror stories but i know they are out there.

    Regards,

    T.

    Ps - i didnt see the "introduce yourself" section until after composing this. Feel free to move this if it is in the wrong section.
    Wayne and Esther12 like this.
  2. minkeygirl

    minkeygirl Senior Member

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    Hi Thomas, I'm not able to read all of this, (my ME brain) But I got the gist of what you asked.

    About a year or so after I first got ME (a virus) in 1995, I really rallied. I had been barely able to stand up long enough to brush my teeth and then I was able to volunteer at an animal shelter every day for hours. I was using this to prepare myself for going back to work.

    I kept that up for a few years. But because back then I had no clue what to do, and most doctors didn't, my lack of treatment caught up with me and I slowly started to go downhill.

    I think had I had medical intervention I really could have slowed down the progression of the disease. The only real treatment I remember back then was IVIG and it was impossible to get because of Desert Storm.

    I think Dr. Bell is right. You can't base your recovery on what others see. If you've been reading things here for awhile you know that we all have different symptoms, different treatments and how we respond to things.

    All you can do is be realistic, pace yourself and get good medical care.

    Minks

    There is an Introduce Yourself Thread in Community
    heapsreal likes this.
  3. SOC

    SOC Moderator and Senior Member

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    My daughter and I both got large improvements in cognitive function (and fatigue) by treating chronic HHV-6 with Valcyte. My cognitive function has continued to improve, although slowly, in the ~18 months I've been off Valcyte. I wouldn't say either of us are back to pre-illness levels of cognitive function, and I get mental fatigue before physical fatigue if I overdo. Still, it was a huge improvement and small improvements continue, so I'm happy with the treatment.
  4. Thomas

    Thomas

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    Thanks minkeygirl and SOC. i was on valtrex for 10 months then stopped. Thinking of going back on it to see if it will help. I am not sure why my ME doctors like Hyde and Bell think that time may be all i need when i seem to be declining in certain ways (improving in others)? Who knows theyre just doctors not magicians. I will keep trying things until i find improvement. I guess everybody is different, youre right. But i was hoping for some broad statistics - wouldnt that be nice!

    T
  5. Esther12

    Esther12 Senior Member

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    Sorry to say I have little advice. Some people seem to get better, some do not, I don't think that there's much good evidence to say why. It's quite likely lots of people with different things wrong with them end up with the same diagnosis anyway.

    I think it's understandable to feel less optimistic. I'm sure that one year ago you would have expected to be better by now. I think I stayed 'optimistic' for much longer than was reasonable when I first got ill.

    Best of luck with everything.
    Thomas likes this.
  6. SOC

    SOC Moderator and Senior Member

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    Valtrex won't touch HHV-6 or CMV.

    I'm not convinced that Drs Hyde and Bell are at the forefront of knowledge about ME/CFS anymore. There are plenty who will disagree with me, of course. ;) I'd be looking into what Dr Petersen, Dr Kogelnik, Dr DeMeiler, and Drs Klimas and Rey are doing these days. They are more cutting-edge, imo.

    Wouldn't it be great if we had a one-size-fits-all treatment that even our GPs could understand and prescribe? :)
  7. caledonia

    caledonia

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    Hi and welcome. CoQ10 does wonders for me for brain fog. It doesn't work for everyone, but it's easy to try and worth a shot. 100mg per day. You should know within a few days if it's going to work.

    If you haven't run across methylation in your reading, check out my Methylation Made Easy videos (the link's in my signature).
  8. Thomas

    Thomas

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    Thanks again. I take coq10.
    i think i will try and stay optimistic for as long as i can. I feel it can make a difference. Besides, there's always hope and we all have heard stories of people getting better even after years of illness. I doubt any exceptionally bitter people were on that list. I know, easy for me to say, i have only been ill for 22 months. But still...

    T
  9. SOC

    SOC Moderator and Senior Member

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    In case it's any encouragement...
    My daughter was a hairsbreadth of having to quit college when she started Valcyte. That was 3.5 years ago. She graduated last May with a major in mechanical engineering and a minor in physics and is starting graduate school in the fall. She's fully functional now, but she takes a number of symptomatic treatments to stay that way.

    My uncle had mild ME/CFS. After Valcyte treatment he is a very active retiree -- dancing, playing softball, running after grandchildren. To the best of my knowledge, he is currently taking no treatment for ME/CFS.

    I was the most severely ill of the three of us. I was bedbound when I started Valcyte. Now I work part-time at a non-physically demanding job tutoring math and science. I'm not fully functional, but I'm vastly improved. I actually have a life now. :)

    Valcyte is not the treatment for everyone... and it wasn't all that was required to get me from bedbound to where I am today. My point is: it is possible to get substantial improvement with ME/CFS. Sadly, it's not clear what is going to work for any given person. In my experience, it takes dedication and determination to stay with difficult treatments. Not everyone improves, for various reasons, but it's possible.
  10. Thomas

    Thomas

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    Thanks SOC. how long were each of you ill before starting valcyte?
  11. minkeygirl

    minkeygirl Senior Member

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    One thing I'll say, sitting and waiting will do nothing. You have to be an active participant in your treatment and proactive in doing things. You can't sit around and wait for "something" to happen. You have to make it happen.

    There are so many things to try to help yourself. Some with OTC stuff, some RX. See what's going on and start doing something.
    ggingues likes this.
  12. SOC

    SOC Moderator and Senior Member

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    That's harder to answer than you'd think. :) I think my uncle was mildly ill for 10 years or more -- not too sick to work, but too sick to do anything but work finally. I think he recovered fully because he was never seriously ill. He took antivirals for a very long time, though. More than 6 years, I think.

    My daughter was sick 5 or 6 years, but the first few years she was in remission most of the time with only a few flares a year. We probably wouldn't have known she had ME/CFS except that we got sick with the same flu-like illness at the same time. The flares were clearly ME/CFS, not just to us, but to the specialist who diagnosed her. She got continuously ill after her pre-college vaccination boosters. She was continuously ill -- moderate with worse flares -- for a year before she got Valcyte.

    I was sick 5 or 6 years, starting at mild/moderate declining to severe before I started Valcyte.

    The doctor who treated us with Valcyte told us she was likely to regain full function because she had only been continuously ill for a year. For me, he said, "We'll see what we can do." I think the general thinking is that the sooner you get aggressive antiviral treatment (assuming you need it) the more likely you are to regain full function.
    taniaaust1 likes this.
  13. taniaaust1

    taniaaust1 Senior Member

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    How's your adrenals? Consider trialing an adrenal adaptagen seeing you cant use your brain without feeling very overwhelmed.

    You could also trial one of the methylation protocols as they seem to help many of us some. Be aware that if you are doing too much, that nothing may then help. Having right pacing and not going over certain limits can be essential for improvement.

    I agree with what the other said, dont wait around just hoping to get better (as that isnt likely to help at this point), you need to be working towards getting better and trialing things or changing things you are doing now.
  14. Thomas

    Thomas

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    Thanks taniaaust1. I have done a lot of treatment so far. And i still work part time and am renovating a condo so i am certainly not justbwaiting around to get better. Why wouldnt it help at this point? Just curious...

    Also, i took dhea and pregnenalone which helped alot for about a week and then my body went back to normal ME. Might want to try that valcyte though. I could probably convince my gp here to Rx it.
    taniaaust1 likes this.
  15. SOC

    SOC Moderator and Senior Member

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    If your local GP can't or won't Rx Valcyte (it's very expensive), you are close to Dr Lerner in Detroit, MI. He has the longest experience of any doc with using Valcyte for ME/CFS.
  16. Wayne

    Wayne Senior Member

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    Hi Thomas,

    Thanks for sharing your story; and welcome to the forum! As far as suggestions... Lots of information here on this board, including theories, protocols/remedies that have worked with varying degrees of success with different people, etc. Since much of ME/CFS has to do with immune system dysfunction, that’s where I generally put a lot of my attention. It seems that at some point, pwCFS’s immune system become susceptible to some kind of triggering shock, whether through our genetic makeup, poor diet, exposure to toxicity, etc. When a shock arrives, it seems to tip an already susceptible immune system over into full-blown ME/CFS. I’ve noticed shocks are generally the result of exposure to some kind of pathogen, and often times, as seems to be your situation, from the result of a vaccination.

    One modality I’ve been focused on recently to help correct my own immune system issues [including autoimmunity] is homeopathy. I know an Osteopath who seemed to have gone into full-blown ME/CFS for several weeks. In desperation he went to see a homeopathic practitioner, and within 1-2 days of taking a remedy, was completely recovered. I believe this approach probably works better if a person can get an appropriate remedy in the beginning of their illness [as seems to be the case with you]. — In this regard, I’ve tended to look more for alternative solutions to our complex health issues than most here on this message board. I just believe we’re dealing with issues that conventional medicine, despite all its strengths, is not particularly well suited to handle.

    Since stress of all kinds seems to be very hard on the immune system, I also tend to put a lot of attention on addressing varying things that I believe may be stressing my system. Unlike most other PR members, I tend to put a rather inordinate amount of attention on correcting any kind of stresses stemming from structural issues, including the entire musculo-skeletal system. In this regard, I found a procedure called Atlas Profilax to be very helpful for me. I am also a big believer in “nasal specific” therapies to help correct sinus and cranial structural issues. Both of these modalities can in turn help correct varying kinds of TMJ issues. — 70% of the nerve impulses exiting the brain travel through the TMJ joint. If that’s out of alignment and impinging normal nerve transmission, that’s going to put an awful lot of stress on the entire body. I’ve also recently discovered the work of Pete Egoscue, whose work focuses primarily on correcting structural issues. I’ve already noticed significantly less stress in my system from his simple and mostly non-exertional “e-cises”.

    Though most of my efforts on stress reduction focus on physical stresses, I also try to alleviate as much emotional stress as possible using various kinds of energy balancing and “tapping” techniques, such as EFT [Emotional Freedom Technique], “body talk” [especially balancing of the cortices], polarity exercises, and more. Perhaps from a spiritual perspective, I’ve gotten a lot of benefit from the spiritual exercise described in the 3-minute video that I’ve provided a link to in my signature [see below]. — Again, welcome to the PR forum. I would like to emphasize that you still seem to be in the relatively early stages of ME/CFS, a time when your chances of recovery are greatest. Best of luck to you figuring out what may be your most important core issues [which often seem to be different with each individual].

    Regards, Wayne
  17. SickOfSickness

    SickOfSickness Senior Member

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    One of the common patterns is trying to get healthy by getting tests, seeing more doctors, buying supplements, and so forth. Then a period of giving up and feeling it was a waste.

    Another pattern is us becoming poor because of all the efforts we tried :(
    taniaaust1 and Wayne like this.
  18. SOC

    SOC Moderator and Senior Member

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    Another pattern is to find the top specialist whose treatment plan best fits your symptoms, work out a detailed treatment plan with him/her, follow it carefully, and communicate well with your specialist about what is working and what is not. It is not likely to be an easy or fast path, but it can work.

    Sadly, in the US, no matter what you have, it is expensive to be sick. If you have a poorly understood illness, it's even more expensive. :(
  19. Hi Thomas,

    Have any MDs brought up Cerebral Folate Deficiency Syndrome with you? My son has autism, and a main part of his underlying illness is CFD Syndrome. Most of the time CFD is not genetic (per Dr. Richard Frye MD in Arkansas), but is an auto-immune disorder. I have an adult friend who has the genetic kind, but it was not diagnosed until recently. She is 54 years old right now. Most of the MDs have told her that CFD is a childhood illness, but that's not true.

    With CFD, Folate cannot pass the blood brain barrier. I think, in most cases, there are Folate blocking anti-bodies in the blood (blocking and binding). These are measured by a blood test. (I know of only one company who is doing the blood test right now.). Also, all dairy products somehow "block" the cerebral folate receptors in the brain. For an official diagnosis, you need to have the blood test and a lumber puncture. I believe they measure methyl folate in the cerebral spinal fluid. Per Dr. Frye, below 40 is abnormal, and between 40 and 50 is "low normal". My son's number is 29, which is very low, and can be a sign of mitochondrial dysfunction. My friend's number is 39. (My son just had a fasting blood draw for mito dysfunction....it has to be a fasting blood and urine test.). Methyl Folate is also known as 5-MTHR.

    Both my 7 year old son and my friend are on dairy free diet, and are also on prescription folinic acid. MDs do not usually prescribe methyl folate injections (brand name is Deplin) because it is difficult to measure the dosage. The med that my son and my friend is on is called Leucovorin. Going dairy free took my son out of an apparent "brain fog". (He is very partially verbal.). Leucovorin has helped my friend tremendously with the mysterious illness that she has been dealing with for 6 years. Dairy causes brain fog for her.

    There is a forum on here that discusses CFD (I think). If you would like to read more about it, please do a search for Richard E Frye MD or Daniel Rossignol MD. Dr. Frye does see adult patients, even though he is currently head of the Neurosciences program at Arkansas Children's Hospital. Dr. Rossignol is mainly in California, but I think he still has an office in Florida.

    Hope this helps,

    Madison
  20. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I thought I read that Dr. Myhill suggest 200mg/day? I try to take that much when I am really active, so I don't crash and have ok energy the following day.

    GG

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