The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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first post, would love some guidance

Discussion in 'General Treatment' started by uni, Nov 25, 2011.

  1. uni

    uni

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    Hi there,

    I am in my early 20s and have had CFS for about two years now. Mine was a gradual onset, had a cold/flu, and noticeably had symptoms come up after that virus. I would say that mine was triggered by a prolonged period of stress - particularly from over-exercising - and that virus came when my immune system was already weakened. I have a mild/moderate case of CFS. I have never been bedridden - but am unable to work. My symptoms include post-exertional malaise/exercise intolerance, sleeping difficulties, brain fog/poor concentration/memory, IBS/dysbiosis, sore achy legs and back, hypoglycemia, etc. I spend most of my day sitting down, I am able to do some housework though I get tired and weak if I stand too long. I can tolerate a small amount of walking and have a hard time reading and learning things.

    I am currently seeing an integrated physician - though he's not a specialist in CFS, he's spose to be a very good doctor. I've been reading CFS forums and there are some things I want to try - specifically the simplified methylation protocol, LDN, and possibly the Gupta program (although I understand some people think its a scam). I was wondering if there was any advice you guys could give me. It seems like the biggest stress trigger which worsens my symptoms is physical, I can feel somewhat functional if I just sit on my butt all day (~60%). I'm not sure if I have a virus, since my symptoms are not as bad as many of you. I definately feel like the stress response has been "broken" in my brain, specifically to physical exercise. My doctor says that they are immunological abnormalities from my blood results, so we are pursuing that. My lab results are mostly normal except for elevated TSH, but I've already tried thyroid medication and it seemed to make things wrose.

    I would love to just try out a bunch of things, but am afraid I'll just get no results and waste my parent's money, seeing as there is still not enough research into CFS (and I've already spent over $10k on medical care with no real results so far). I think the first thing I will try is the simplified methylation protocol as it is relatively cheap and easy to follow.

    Thanks
     
  2. Esther12

    Esther12

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    Personally, I'd advise you to not bother spending much on medical care, or expect much great advice from doctors.

    Lots of things can cause fatigue, and identifying/ruling them out would certainly be useful, but I'm not sure how great anyone is at treating CFS. There are things like connective tissue disorders, neurological problems, etc, which can be missed. Are there any weird things about you, other than the fatigue, that could be a clue to something else?

    If stress was a big problem for you, I would focus on relaxing and playing about. Try to really relax yourself, and then do what you feel like in that moment. If you are in a position where your parents are able to help fund/care for you, then that should allow you more freedom to do what feels best for your body (hopefully they'll understand, and not expect you to be pushing yourself to get better when that can be counter-productive). eg: Rather than spend your energy on doctors appointments, I would go for a walk/sit/chat somewhere nice (if you're well enough).

    If you think that you're still cognitively anxious, then something like CBT for stress might be helpful, or you could read up on different management techniques.

    I could well be wrong about all this, but that would be my very general advice. There are a lot of friendly doctors happy to take money on the pretence that they can help CFS patients, and I'm a bit suspicious of all of them.
     
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  3. floydguy

    floydguy Senior Member

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    I completely disagree with this advice. My take would be to visit somebody like Dr. Enlander or Klimas and get as full work up as possible - while you still have some money and health insurance. At least two positive things could come from this: evidence for disability (if needed in future) and the possibility for treatment of various things (such as high EBV, HHV-6, etc.).

    The longer this goes on the more difficult it becomes. Don't waste it with CDC/Simon Wessley mind over matter BS. There will be plenty of time for that later.
     
    Dainty likes this.
  4. Bob

    Bob

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    Hi uni,

    A big welcome to the forums.

    It seems that many of us try various treatment approaches and have varying degrees of success. Different people seem to find different things helpful.

    For me personally, I've always found that pacing and resting are the most important and helpful things for me. I don't take any supplements or medications specifically for the ME (except that I find very small doses of clonazepam very helpful.)

    Whenever it seems that my symptoms are going southwards, I find that intensive rest can nearly always preempt a relapse.

    If I'm stable, then I use my own form of pacing, which just means doing gentle and regular walking whenever I think it's safe.

    I haven't tried LDN or any prescription medicines, and i've always found that most recommended supplements actually make me worse.

    Physical and mental stress can cause ME symptoms to worsen. Exercise (physical stress) often causes a relapse.

    Stress is well known for being a trigger for ME/CFS. So, although you might think you have a stress-related illness, it may be the case that the various types of stress that you were experiencing were a trigger for the CFS/ME. It's also very common to develop CFS/ME after a virus. Viruses and stress are very common trigger events.

    My biggest recommendation is to learn to pace and rest well.

    Hope you enjoy the forums,

    Bob
     
  5. Bob

    Bob

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    Uni, it's very hard to give someone advice, because we all respond differently to treatments. So you will probably get lots of different answers and opinions, but if you have the resources, then I agree with floydguy that it might be useful to see a physician who really understands CFS/ME. But 'experts' and non-experts alike can be helpful or unhelpful, possibly even giving damaging advice or treatment if they mis-understand the illness. So I think it's important to find a doctor or therapist who you can form a good relationship with.

    Personally, I don't think that it is worth spending money on psychological programs or unregulated pseudo-psychological programs such as Gupta, unless you think that they will help you with specific psychological issues. I personally believe that relaxation and resting are likely to be more helpful than any programs that you can spend loads of money on.

    ETA. I agree with Valentijn, in the next post, that having a sympathetic doctor is invaluable, and if you have a good relationship with a non-expert, that can be very helpful.

    Basically, dealing ME is very difficult and complex, and we all learn what's helpful for us over time.
    So I wish you the very best of luck with finding what works for you.
    It's a great idea to ask for advice, as you have here, and then to take from it what you think might be helpful for you personally.
     
  6. Valentijn

    Valentijn WE ARE KINA

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    I think it's useful to have a good relationship with an open-minded local doctor, even if they aren't an expert. For starters, they can order tests from labs that only deal with doctors :)

    I got a lot of help from a non-expert (also integrative), because he asked questions for over an hour and listened to my responses. He then suggested we test my adrenals and neurotransmitters, and found some big problems right away. Treating me according to those results had a big impact right away, and it gave me a starting point for further research and self-experimentation with supplements.

    As a result, I now take 1800mg/day of N-acetylcysteine, and I'm back to sleeping as wonderfully as I did before I got sick, and having various levels of relief from other symptoms. If I were avoiding doctors altogether or only talking to specialists, I would've missed out on that.

    Plus it's just nice to have a medical professional listen to me, talk to me like a non-crazy intelligent human being, affirm that I'm physically ill, try to help me, and be available if I need help :p
     
  7. Tristen

    Tristen Senior Member

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    Being only 2 years into this illness, you have a much better shot at recovery, or at the very least minimizing progression. The disease becomes more entrenched with every year that passes and with everything we do that contributes to it's progression. So, it's imperative you do everything you can now to arrest the disease and maximize chances for the best possible outcome.

    There are a few things you can do on your own. You already know the number one priority, but I'll say it again, PACING. Do not push yourself into crashes. This is by far the most detrimental and self defeating of things we can do. Convalesce and give your body a chance to heal. Next is diet. Listen to your body about what it likes and doesn't like. Watch for food allergies. Eat as much of a whole food diet as possible eliminating processed foods and preservatives. Avoid toxins, this includes moldy or chemical environments. Drink lots of good water. Lots of rest.

    Your doc sounds pretty descent. While your looking for an me/cfs doc, he should be good enough to at least work on ruling out all of the exclusionary diagnosis'. http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf See the bottom of page 2 and top of page 3. Make sure you don't have just CFS (rather than me/cfs), that can be caused by many things that are very often treatable. You don't want to miss a treatable illness. This doc sounds astute enough to work on this and may even find a treatable infection, or nutrient deficiency problem like VD3, or B12.

    Having PEM is a pretty strong indicator that you have this disease, but it doesn't make it definitive. With everything else ruled out, and finding nothing treatable, it's time for more complex testing and diagnostics with a good me/cfs doc. I would be working on setting that up now since most of them have a waiting list. I would also be questioning the current doc about how complex of testing he is willing to do. Is he willing to use the right labs to look for all Herpes Viruses? Will he be willing to treat them adequately. Will he look at complex levels of immune testing? In depth hormone testing? Will he test you for Lyme & Co, using the right labs like IgeneX and use their criteria rather than the CDC?

    I think the Simplified Protocol is a good idea. But I think the Gupta program is a bad idea. I feel it's not only bad for the pocket book, but it's also bad for ones self esteem due to the guilt over failing to improve. LDN does help some people, others feel it's poison. I'm one of the others. I've gotten the best results from: Pacing, Anti-virals, Simplified Protocol, diet. B12 is my favorite and most effective supplement. I'm currently trying natural anti-inflammatories, Curcumin, EPA's, & Bromelain, because much of my current symptoms are due to inflammation.

    There is also a newbie informational thread somewhere on this forum?
     
  8. richvank

    richvank Senior Member

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    Hi, uni.

    I want to encourage you to go ahead and try the simplified methylation protocol, with monitoring by a licensed physician. As you mentioned, this protocol is not very expensive. It helps most of the people who try it, and there have actually been what appear to be a few complete recoveries from it. I encourage monitoring by a physician, because a small number of serious adverse effects have been reported, mostly by people who had comorbid conditions along with ME/CFS. If you would like more information on the rationale behind it, I would encourage you to view the video and/or scan through the slides from a seminar I presented in Sweden last month. Both can be found on this webpage:

    http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%7D

    Best regards,

    Rich
     
  9. Gamboa

    Gamboa Senior Member

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    Hi Uni,

    Welcome to the forum.

    You already have a lot of good advice here so I won't say too much. I did want to say that by visiting a ME/CFS specialist, although expensive if you are in the States, offers one very good thing: a fairly definite diagnosis from a respected specialist. This can be invaluable if you are applying for disability pensions or having problems with insurance companies. I realize you are not working so this probably isn't an issue for you but it might be one day.

    From personal experience, as someone who worked for 20 years before becoming too ill, visiting a known ME/CFS specialist , gave me the power to stop most people, including friends, family, co workers, other doctors, and insurance companies, from doubting my illness.I have been off work for 4 years and on LTD. During the first 2 years the insurance company gave me a hard time and kept trying to get me back to work. I saw many specialists over this time, such as endocrinologists and internal medicine doctors, but none of them really knew much about ME/CFS. Once I saw the ME/CFS specialist and got a diagnosis from her, I no longer had to fight with them. They immediately backed off. :victory:

    Gamboa
     
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  10. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    A good integrative MD is a good person to see for sure. Mine tests for defiencies and other good testing. Our bodies are ill and stressed so we use our reserves and are left low on things like Vit D, B12 and other things. My integrative doctor helps me with a schedule of many supplements that have helped enormously. There is no cure like with many illnesses, but there are certainly things we can take that help our bodies be stronger, sleep better etc.
     
  11. kaffiend

    kaffiend Senior Member

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    I had/have a similar set of symptoms. Physical stressors are the worst triggers and I feel OK if I don't do anything. Methylation/glutathione precursor supplements (especially methyl B12 and N-Acetyl-Cysteine) have been very helpful, as well as licorice root. If licorice root helps, you might talk to your doctor about lose-dose hydrocortisone (<20mg).
     
  12. uni

    uni

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    thank you, and a question for Rich

    Hey guys,

    Thanks for all the great answers. Its very helpful as the only outlet I have to talk about this condition is through forums. I'll plan on sticking with my integrated physician for 6 months to a year, and if I don't get results I'll seek out a CFS specialist. I've been careful about pacing myself and have already made changes in my diet which reduces my symptoms. I've been making yogurt from "super-strain" probiotics and hoping that will reduce the dysbiosis and inflammation from my gut.


    Rich, thank you so much for your work on ME/CFS. I have a question regarding the dosages of your protocol. I understand it has been lowered to reduce adverse effects from lifting the methylation cycle too quickly. Since I am 2 years into the illness and not as severe as others, I seem to tolerate the dosages well. I've had some start up effects to to the supplements but it went away within a couple days. I still cannot tolerate methylcobalamin, however. Can I progressively increase my dosage as long as there are few side effects - will this help the methylation and glutathione recover faster? I was thinking of working my way to to something like 10mg HB12, 2mg methylfolate, and 2mg folinic acid. I know some people have had good results with high dosages of folate or folinic acid.

    Thanks
     
  13. hurtingallthetimet

    hurtingallthetimet Senior Member

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    hello i am new here also but everyone seems very nice and helpful.....i would like i think some others said try to find a really good doctor maybe post a thread about your area and see if anyone else going to a good doctor near where you are...im not sure maybe they have an area just for that..but as i said im new so i have no idea...maybe someone else has or will let you know if they do..

    it took me awhile like alot ive heard to find a good knowledgeable doctor...at least wehn i tell the doctor i see now when a test is ordered that i cant afford it...[ i spent so much when first ill being sent from doctor to specialtist and test and physical therapy} that i cant afford a bunch of test anymore..the doctor understands and has been very knowledgeable...
    so many problmes and illness come up from these illness it is crazy..

    i understand the stress problem...i have soical anxietys panic attacks paranioa depression among other things it is horrible....you may find a doctor that treats everything..not sure if any do that anymore..but i see a conselour who has helped..and a psych doctor...i hope you find a great doctor if that is the route you choose...and if not find something great that helps...welcome to the boards
     
  14. taniaaust1

    taniaaust1

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    I saw you posted that you plan to wait a further 6mths to 1year before you seek out a ME/CFS specialist but I agree with what the others here have said and that you should be looking for one now (esp since you have been ill for 2 years already). The longer one has this illness..the less likely it seems to be that one will recover. Now is the time you have most chance..so find a specialist now.
    (Thou a good doctor IF he is willing to do a ton of reading and research ME/CFS and keep up with that will also be just as good..but such doctors are rare hence most need a ME/CFS specialist).

    There is also a risk that something may happen eg vaccine reaction, catch something etc etc or for no reason you can see at all, and you could suddenly go very bad. Its far better to already have a ME/CFS specialist one has seen if that occurred.. then be bedbound and maybe not even be able to leave the house and not have seen one. Many once you have have seen them, will do phone consults if a person got worst and couldnt go to them.
    So do think about doing this while the ME/CFS is milder. Of cause you may recover but after 2 years it is quite likely you wont and it is possible to get far worst at any time with this illness. You are playing a guessing game of russian roulette.

    It is a wise decision to be trying something like working on the methylation cycle what you are doing. Keep trying things. I suggest to do what you've done and try the less expensive and not harmful things first. Keep good records of all the things you've tried and how your health was at the time to look back on.
     

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