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Overwhelmed by treatment options

Discussion in 'General Treatment' started by Ocean, Sep 19, 2011.

  1. Ocean

    Ocean Senior Member

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    I have mostly avoided the treatment section of the forums. I find I'm really overwhelmed by all the many things people have tried and are trying and the endless types of treatments to try. There is the financial aspect of trying lots of treatments and medicines and supplements. There is the energy element, where my energy is so limited I don't know if it's a good idea to try a bunch of things, that simply by exerting the energy to learn about and try them I may make myself even worse. When I go out for anything including doctors and labs my post exertional sickness gets very bad and lasts forever. I'm not at the phase now where even a few days rest will help. I just don't seem to really get better lately at all.

    Right now I'm housebound aside from my husband driving me to medical appointments that I keep extremely extremely spaced out from each other. I haven't even finished doing all the lab tests I need to do. Part of me feels, well, there are no cures, no treatments that really seem to be a proven relief, and each time I go out of the house I worsen. Also a lot of times when I try a medicine or supplement it seems to set even the small equilibirum I had totally off balance and makes things worse than better and I can't even get back to how I was before. I thought maybe I could stay home and rest for a while and then improve a bit and then pursue some more medical stuff. But I haven't gotten any better!

    How do others balance the need for rest and not spending too much and not getting into a flareup/relapse with trying different things? I don't want to chase after every treatment out there and find I'm no better, or even worse off for it, but I guess doing nothing but trying to rest isn't helping either. I have tried to follow some of the tips from Bruce Campbell but I'm just not seeing any improvement. I think I've worsened a lot the past few months even though I keep resting and not doing exertion.
     
  2. Sasha

    Sasha Fine, thank you

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    Hi Ocean - I'm sorry you're having such a frustrating time at the moment. We all know how horrible it is when nothing seems to help and it seems risky to try things.

    I wonder if, for now, you might like to try meditation? I don't mean just for its calming properties but because it helps with sleep, which is hugely important in getting better, and helps the immune system. And it doesn't have any side effects!

    There are some good threads on meditation on PR. I'd recommend the MBSR stuff by Kabat-Zinn - the Mindfulness Based Stress Reduction programme designed specifically for people with chronic illness. There's a (long) book and a good CD of guided meditation.

    I'd also recommend the Wildmind online meditation course which of course, you can do from your bed.

    Good luck! I hope others will have more suggestions.
     
  3. Valentijn

    Valentijn WE ARE KINA

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    Personally I'll only try treatments that are either 1) well-proven to be helpful in scientific studies or 2) involve ME/CFS theories that explain our symptoms and have a detailed biochemical explanation for how they work. I also try to keep cause and effect in perspective, and aim for the underlying cause as much as possible.

    I won't try rife machines because they are expensive, and there is no data showing that specific sound frequencies kill microorganisms in the body. The same goes with "brain retraining" theories, which are little better that faith healing when addressing a physical illness.

    I think you need to look at the data available, and decide what you think the underlying cause is of your ME/CFS. Then you need to find a treatment for it that is scientifically sensible.

    My result of this investigation for myself is that I think richvank's glutathione depletion theory is likely a central piece of the puzzle. It makes sense even when delving into the nitty gritty details of how glutathione operates in the body, and I have test results that strongly indicate this is a problem for me. There was also a poll recently on the "Diagnostics Guidelines and Laboratory Testing" board on this form, and 9 of the 18 respondents indicated they had abnormal methylation lab results. 0 indicated normal methylation lab results.

    So I'm on richvank's protocol, more or less. It hasn't cured me, but it helps somewhat, and he advises giving it 9 months. As a likely side-effect of glutathione problems, I have highly elevated glutamate and glycine levels. Treating the excess glutamate seperately from richvank's protocol has resolved my neurally mediated hypotension symptoms, aside from during PEM crashes. Both treatments are relatively cheap, and the essential components can be found in most fitness supplement shops, or online, without any need for prescriptions.
     
  4. Sasha

    Sasha Fine, thank you

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    That's interesting - would you like to start a new thread on that if you have the energy? A lot of us have NMH.

    I too am on the b12 protocol but have had to have a second go because in the first, I developed what was probably an Mg/Potassium deficiency induced by the b12 starting to work and had to stop the protocol (frustratingly). I'm starting again more gently. For Ocean, it sounds as though it would be something to start very carefully. Rich's protocol has lower doses of b12 than Fred's and hence should be gentler. But I think both are things with components that you have to experiment with because some can make different individuals worse rather than better. Testing would help.
     
  5. Valentijn

    Valentijn WE ARE KINA

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  6. Sasha

    Sasha Fine, thank you

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  7. Valentijn

    Valentijn WE ARE KINA

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    Hehe, no worries. We've all been there (in fact, I think I'm there now)!
     
  8. justy

    justy Donate Advocate Demonstrate

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    Hi Ocean, i really do know how you feel, the information on here can be so overwhelming and it can feel like we need to be better just to wade through it all and make decisions. I have a constant fear thet i am missing out on "the" treatment or therapy that is helping others and swing in my mind from thinking i should try one thing and then change my mind to another. In the end i dont try any of them because by the time ive decided im too exhausted to track down the supplements or find a therapist or work out how to pay for it all!

    I think Sashas suggestion of meditation is very useful. Doing just the basics has given me the best results, mainly based on Dr mYhills testing and advice, but you can download her free e book which sets out her ideas and gets you on your way.

    For me the basics are;
    meditation -even if you are not into the spiritual aspect just laying down and not doing Anything once or twice a day is helpful and is REAL resting (unlike my kind which is go to bed with the computer!)
    pacing and rest - stopping as soon as you feel worse (im not good at this but then i do have a family)
    basic supplements - Vitamin C 2 grams a day split in two doses, magnesium 300mg a day, B12, D3 1-2000 iu a day Co Q 10 100mg a day. Selenium 100mg a day.
    For my gut Kefir which i grow myself and have once a day in a smoothie with some omega oils and berries.
    Diet -no caffeine, alcohol, cigarettes, sugar or wheat, perhaps dairy. higher protein and lower carb.
    Environment -reduce exposure to all toxins eg make up, shampoo, paint perfume hair dye obvious mold etc.
    sleep -try and get 9-10 hours at night and one nap in the day.

    This is the basis of Dr M's treatments and i have had some gains although slow and recently have had a relapse (due to not pacing well enough and eating too much sugar again i think)

    Now i read back over that its no wonder we feel overwhelmed - i consider that basic before even adding in any other treatment or protocol!
    Take care, Justy.x
     
  9. Sasha

    Sasha Fine, thank you

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    Thanks, justy - I should have mentioned that meditation is not a spiritual or religious thing (although some religions use it as a tool) - it is simply a specialised form of concentration, usually on the breath. It sounds simple but has profound effects on the brain and body. I find I get deep rest out of it and that my sleep noticeably improves.
     
  10. Ocean

    Ocean Senior Member

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    Thanks Sickofsfc,

    I'm not able to travel unfortunately. I have difficulty even going to lcoal doctors and lab tests. Even if I improve the cost is likely to make it prohibitive for me. At least based on my research most of these doctors are far away and charge a lot. I could stand to look into it more though. If I do get better enough to travel I will research those doctors more and see if the cost is something I could justify or handle and what kinds of results those doctors are getting, to see if it makes the huge physical risk of travel and the cost, which I am not in a financial situation to pay, all worth it. In the meantime I have to try things that are a lot more low maintenance, cheaper, and nearby. That's why lifestyle changes appeal to me, but they may not be enough or even really helpful.

    Thanks everyone for the replies, I've worn myself out replying to another thread so will be back later to read these thoroughly and reply. I really appreciate the input and feel a bit better less overwhelmed having skimmed some of the suggestions.
     
  11. Valentijn

    Valentijn WE ARE KINA

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    I suggest looking for a doctor that is willing to use Skype, believes in ME/CFS, and will order the required testing. A lot of times you can mail off the lab "sample" yourself from home. A fully licensed naturopathic doctor (ND) or an MD with an open mind may be a good place to start. They usually don't deal with insurance companies anyhow, so may be cheaper than a normal doctor, and almost certainly cheaper than an ME/CFS specialist as a CFS clinic.
     
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    yes, finding a sympathetic doctor even if not a cfs guru is helpul in treating symptoms like sleep, pain and mood which is secondary to cfs, as well as other health issues that complicate things. Other stuff like testing and treatments will probably need a dr more knowledgable and in time u can slowly increase your knowlege of this. Treating symptoms can help u gain more energy to get your head around cfs treatments. Natural treatments keep simple until u know more, so a good multi vit and some antioxidants like vit c and e, fish oil. It takes time to understand it all and longer to trial everthing until u find what helps which seems individual to everyone. cheers!!!
     
  13. Ocean

    Ocean Senior Member

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    Valentijn,

    My doctor (rhuem.) does believe in it and seems pretty open to things. So as long as I bring in ideas he considers them and will write labs slips and referrals, within reason I'm guessing. I haven't seen him too long but so far my experience has been good. He admits he doesn't know a ton but is open to things I bring in and very sympathetic as well, which I think is great. I just have to do all that research that overwhelms me in order to make that happen! I'll get there. Do you think the list on Dr Myhill's site is a good one to start with as far as testing?

    I pay a lot less with things covered by insurance than not so seeing a doctor not covered by insurance is something that financially is not really feasible for me. Not saying I would never do it if it meant my health may improve greatly of course, but that I can't afford to do much outside of insurance, and can't even really afford what is covered by insurance much less without it.
     
  14. Ocean

    Ocean Senior Member

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    Heapsreal,

    Sleep has been such a struggle. The doctors are willing to give meds, I just don't find they help me much. I do take them when I have to but none so far seem a long term answer for me. I feel like you said if I could get that improved, I'd function better and be more ready to tackle the other things.
     
  15. Ocean

    Ocean Senior Member

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    Sasha,

    Yes I really need to add in some meditation, it's been on my mind to do so. I will look up the ones you mentioned. Thank you!

    Vaneltijn,

    See just the word "glutathione" makes me want to go running for the hills. I don't know if it's mind fog, not feeling well, or my lifelong inability to understand science or all of those but my mind just shuts off when I read all these terms and theories on this site. I think that has been a large part of the problem, I have no idea what people are talking about with these things and when I read about it all I get out of it is something like "bla bla bla gluthathione, bla bla bla methylation." I don't know how to get past that. That's why the lifestyle changes approach has seemed so appealing to me, it's so simple and easy to comprehend. Maybe once I feel a bit better it will be easier to start trying to tackle some of these other topics, I don't know.

    Thanks Justy, I am doing a lot of those things too. Not all the supplements at this time though. For now those types of things are easier for me to understand and put in place. I guess I just haven't seen results from them so I felt I need to step it up and start looking into other things, yet I'm struggling to manage that.

    Thanks everyone. I think I need to take it slow, so I don't get overwhelmed. I'm just not sure if I'll ever be able to understand some of these concepts. Are there any links that maybe easily explain things like gluthatione and other things people are doing and why?
     
  16. Valentijn

    Valentijn WE ARE KINA

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    There are, but they aren't particularly mind-fog friendly. On a basic level, glutathione is very important in a lot of body systems. It does a lot of very useful stuff, and not having enough of it can cause a lot of problems.

    Glutathione is made from three substances (glutamate, glycine, cysteine), and if we can't make enough of one of those, we can't make enough glutathione. And the ones that we can make enough of aren't getting used, so they might be loitering in our bodies and causing trouble (such as by causing NMH).

    For example, I have too much glutamate and glycine as of last month, and had too much homocysteine 5 years ago. This indicates my homocysteine is being very naughty and not converting to cysteine as efficiently as it should. And without enough cysteine, there won't be enough glutathione.

    So there can be multiple sets of symptoms that are sort of related. The symptoms of low glutathione, symptoms of low cysteine, symptoms of high glutamate, symptoms of high glycine, and symptoms of high homocysteine.

    This means that I can treat my high glutamate levels to make my NMH go away, but that treatment has no effect on my PEM, because the PEM is not caused by glutamate levels. This also means that treating high glutamate levels, for example, is probably just providing symptom relief, and is not helping me recover from ME/CFS.

    richvank's protocol is designed to treat the central cause of ME/CFS (converting homocysteine to cysteine). But he says it can take a while, and it looks like it might have been most effective for people that had already tried many other treatments which may have helped bring some other systems closer to normal functionality (like dealing with gut problems, active viruses, etc).

    His full set of explanations are on the wiki here at http://forums.phoenixrising.me/forumdisplay.php?91-General-Wiki-Pages
    The first and most basic (which answers your questions somewhat), is at http://forums.phoenixrising.me/show... Wiki Pages:Documents by Rich Van Konynenburg

    I think it's nicely simplified to help with our comprehension problems, but it'll probably still take a few reads on good days before it sinks in.
     
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  17. Ocean

    Ocean Senior Member

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    Thanks for breaking all that down for me Valetjn, it was mind-fog friendly! Are there tests that tell you what your levels are, such as when you described your levels of glutamate and glycine? What type of doctor does these tests? Thank you!
     
  18. Valentijn

    Valentijn WE ARE KINA

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    In the US you can get the test done by a company in Wisconsin: https://www.neurorelief.com/ . The "NeuroScreen Basic" includes glutamate, as do a lot of the more elaborate neurological tests. They only deal with doctors and similar health care providers directly, not patients.

    You can find a local practitioner that uses them at https://www.neurorelief.com/index.php?p=find_physician . Alternatively, I think most labs can test for glutamate (glutamic acid) and glycine as part of urine amino acid testing, but most don't do a comprehensive testing of the other neurotransmitters, which can be useful in treating sleep or mood problems.
     
  19. Ocean

    Ocean Senior Member

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    Thanks a lot Valentjn,

    Do you know if amino acid testing is something an endocronologist does?
     
  20. Valentijn

    Valentijn WE ARE KINA

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    There is some relation between endocrines and amino acids that act as neurotransmitters, such as glutamate impacting some endocrine function. But it might not be within the scope of your endocrinologist's practice. If he's an intelligent and open-minded doctor, he might be willing to test your neurotransmitters anyhow, or to combine endocrine and neurological testing.
     

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