1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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No Treatment For Chronic Fatigue Syndrome

Discussion in 'General Treatment' started by Lionheart, Mar 26, 2014.

  1. Lionheart

    Lionheart CFS warrior / survivor

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    I do not receive any treatment, medications, or therapy for CFS and wonder if the standard treatment protocol is to do nothing ?

    I would think that there would be some type of treatment (other than alternative therapies) from my family physician, but so far nothing is being done to help me deal with the disorder or its symptoms.

    Any suggestions?
  2. Jon_Tradicionali

    Jon_Tradicionali Senior Member

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    Zogor-Ndreaj, Shkodër, Albania
    I'd suggest taking any supplements which help you personally and do not affect you adversely. But I would not suggest doing something which hasn't been tested before or experimenting unknowingly as this may damage you further and could affect the way you react to an effective treatment/cure which may be introduced in the near future.
    Lionheart likes this.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    try and get some testing done to give u somewhere to start.
    https://sites.google.com/site/cfstestingandtreatmentroadmap/

    Symptomatic treatment that any doc can start u on is something for sleep and pain, they can help reduce suffering. I personally think a variety of antioxidants can help reduce further damage, not neccessarily a cure of obvious notable effects in the short term.
  4. lnester7

    lnester7 Seven

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    Well if you get at least you natural killer cell numbers tested and they are low you can try to raise those (I use imunovir or inosine (pulsed)!!).
    Test yourself for Orthostatic intolerance specially when you crash (read on poors man tilt table test) and if you are positive demand a tilt table test and treatment foor OI (I use midodrine and florinef). If you monitor your BP and is very low there is a lot you can do by yourself that can improve your quility of live. (Electrolyte, compression garments, Salt...)

    If you have sleep issues ask for a sleep study (specially to check on stage 4 sleep). If you cannot stay sleep is one issue if you cannot fall sleep another issue. (I use midodrine for staying sleep).

    I have/had viral reactivation tested IGG and IGM of hh6v, cmv, EVB, Cosaxie 1 to 6 (I was positive for b2). So I take antivirals for viruses (I use Famvir).

    If you have general pain you can order yourself LDN wihtout prescription and work your way up to it (please read on it).

    I am not doctor just sharing my protocol.

    Sugestion: Change doctors... I had to go around until I found an open minded wanting to try different stuff kinda guy. If he is not even trying to treat symtpoms!!!!
    ahimsa, justy, Valentijn and 2 others like this.
  5. Esther12

    Esther12 Senior Member

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    tbh, the standard treatment protocol is probably worse than nothing!
    Tito, taniaaust1, Lionheart and 2 others like this.
  6. maryb

    maryb iherb code TAK122

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    @Lionheart
    If you post whereabouts you are in the USA maybe someone can come up with some ME/CFS useful doctors.
    Lionheart likes this.
  7. Legendrew

    Legendrew Content team

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    The trouble is that without knowing what the problem is it's very difficult to know what to treat, I don't believe doing nothing it the answer and as someone mentioned previously, symptomatic relief alongside management techniques is the best that is available currently. Things such as low dose antidepressants for muscle aches and headaches are often given and some find they help, things to aid sleep are sometimes given although they have to be used carefully and a good supply of vitamins has been noted to be of mild help by some.

    From a personal standpoint I worry about people getting many off-label treatments and tests; while there are many reports of such things helping individuals, I've read just as many reports of them doing nothing than draining peoples finances and in some cases even worsening symptoms.
    ahimsa and Lionheart like this.
  8. xchocoholic

    xchocoholic Senior Member

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    I'd suggest seeing an integrative / functional doctor. They know about traditional and alternative medicine.

    Meanwhile, many people find diet and toxins play a role in their symptoms.
    A paleo type diet / Dr Wahls is what I'm seeing recomended because it eliminates most known intolerances. I'd make the change slowly tho.

    Personally, I'd try diet before introducing other treatments. Unless you're not sleeping. I use melatonin + 5htp + klonopin (for myoclonus) for sleep. Theanine is an alternative for Klonipin if your mind is racing. Natural Factors makes a sleep supplement with these combined. Their doses didn't work for me tho.

    If digestion is a problem foods like papaya, mango and pineapple at each meal can help. Or you can experiment with taking digestive enzymes. I do best with Enzymedica brand.

    Good luck ... x
    Last edited: Mar 26, 2014
    Lionheart likes this.
  9. Lionheart

    Lionheart CFS warrior / survivor

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    I am in central Kentucky if anyone knows of good doctors here. I will read and re-read the replies and want to say that I'm grateful for each of you!! :thumbsup:
  10. xchocoholic

    xchocoholic Senior Member

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    You might find that the people in your local health food store, hfs, can recommend an integrative doctor for you.

    I chose to see an integrative doctor because of my complicated medical history. I need medication, tests, etc sometimes and these docs know when to prescribe meds vs supplements.

    There are typically magazines or pamphlets at hfs too where these local doctors publish articles.

    tc ... x
    Lionheart likes this.
  11. SOC

    SOC Moderator and Senior Member

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    There are no good ME/CFS specialists in that area. Unfortunately, that's true for most of the country. Even though we have to travel to see a top specialist once or twice a year, it's well worth it. Different specialists tend to have different focuses, but most of the best ones do all the basic treatments.

    Good ME/CFS specialists will run a lot of tests in the first visit or two. Most of them address sleep, pain, orthostatic intolerance, cardiac issues (or evaluate and refer to a cardiologist), immune problems, some gut issues, and a variety of possible pathogens.

    Generally speaking, ME/CFS specialists don't treat psychiatric issues, so you'll need to find a local doc to help with the MDD, PTSD, SAD, and PD that you mentioned in another thread. If your current doc is not handling the psych issues, you need for find another doc because you should be able to get treatment for them without a lot of difficulty.

    No one has a cure for ME/CFS, but the best docs can improve quality of life significantly.
    taniaaust1, ahimsa, WillowJ and 4 others like this.
  12. maryb

    maryb iherb code TAK122

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    I'll tag @minkeygirl I'm sure she posted a list of doctors in the US.
    Like others say you may have to travel, most of us do, very rare we happen to have a ME doc on our doorstep.
  13. minkeygirl

    minkeygirl Senior Member

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    @Lionheart This is an old list but may have some good doctors. What i did to find my Naturopath is go to Google. I typed in every thing I could think of. Naturopath and my city, methylation and my city, integrative and my city, functional medicine and my city. And I found a doc 2 miles from me who I am so far happy with. And we do Skype appointments which is so much easier for me.

    I do pay out of my pocket to see her but it's worth it. After years of no treatment, I started to decline and I now have some hope.

    http://www.co-cure.org/good-doc.htm
    Lionheart likes this.
  14. minkeygirl

    minkeygirl Senior Member

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    Lionheart likes this.
  15. caledonia

    caledonia

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    The standard treatment is to manage symptoms to make you more comfortable. You should be able to get meds for sleep, pain, anxiety/depression, thyroid, etc. If you're not even getting that, I would suggest trying to find another doc - that's not even the standard care for anything!

    I'm sort of close to you in Cincinnati. This part of the country is like a black hole for good medical care for ME/CFS. My good doc is four hours north of here.

    You might be able to find a good practitioner by searching on the Functional Medicine Institute list - I just did the same thing myself to find a new GP here in town. Functional medicine = regular MD who also does alternative/integrative type medicine.

    http://www.functionalmedicine.org/practitioner_search.aspx?id=117

    There is also the methylation doctors lists - see the Find A Practitioner link in my signature. Some of them will work by phone or Skype, so they don't necessarily need to be in your area.

    If you want to see an actual ME/CFS expert, there's Dr. Dale Guyer in Indianapolis and Dr. Martin Lerner is in Michigan near Detroit.
    Lionheart likes this.
  16. Lionheart

    Lionheart CFS warrior / survivor

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    I can't travel due to anxiety and financial restrictions but thank you anyways. Just in case something changes though my zip is 40356
  17. Lionheart

    Lionheart CFS warrior / survivor

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    I am actively searching for a new psyche doctor to treat anxiety as my current one is too afraid to prescribe needed medication, however, I am now receiving treatment for sleep apnea. I do get some Lyrica for fibromyalgia pain, but it does not eliminate all of my pain. So in that respect I guess, I am receiving some treatment for my disorder(s).

    But I will need to make my doctor to understand that ya just can't "push through" everything, all the time!

    Thank you so much for your reply! I will take it all into consideration and I appreciate that you took the time and energy to reply!!!

    Many bright blessings to you,
    Lionheart
  18. minkeygirl

    minkeygirl Senior Member

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    I meant enter your zip code in the link I gave you. There were some doctors in Louisville.

    http://www.mthfrease.com/mthfr/2013/02/10/mthfr-docs/
    Lionheart likes this.
  19. WillowJ

    WillowJ Senior Member

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    If that's what your doctor thinks, you may need a new doc, if this is possible in your area.

    As the others said, there is no reason for them not to treat whatever symptoms and identifiable comorbid conditions you might have:

    many of us have some kind of orthostatic intolerance, if you have that there are things that can be tried; migraines are also common and have lots of treatments available, sleep, pain, depression, other such diagnosable conditions...

    All of the above is standard medicine: if the doctor cannot figure out how to treat or refer for those kinds of things, they are probably not worth seeing.
    ahimsa likes this.
  20. minkeygirl

    minkeygirl Senior Member

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    Sometimes you have to find someone who sort of doesn't care. I had one, told him what I wanted and he gave it to me. No questions asked.
    Lionheart likes this.

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