A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Doctors that treat CFS (SEID) in West Virginia.

Discussion in 'ME/CFS Doctors' started by DCinWV, Apr 7, 2016.

  1. DCinWV

    DCinWV

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    Hello all. I hope everyone is feeling the best you can feel today. I live in a very rural part of WV and have been unable to find a doctor in the state or around the state to see for my chronic fatigue. My regular doctor diagnosed me with CFS a month ago after me being exhausted since 2010. Now she wants me to see a specialist (I think she just wants to hand me off to someone else so I won't be her problem anymore) but she doesn't know who treats CFS around here and I've been looking for weeks and calling rheumatologists and can't find anyone. Any suggestions are greatly appreciated and if anyone else in WV is suffering with CFS, I'd love to start a support group around here.

    Thanks.
     
  2. prioris

    prioris Senior Member

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    First you should not depend upon your local doctor to give such a diagnosis but maybe that is why she told you to find a specialist. Diagnosis is done by exclusion. Many doctors don't know much about it. You should travel out of state to some nationally recognized ME/CFIDS doctor to do $5000+ worth of testing to get real official diagnose. I'm assuming you have insurance. They could even give you treatment advice also. There is a balance test you could do yourself.

    Second, you will likely need to travel to find a treatment doctor. The reality is that you may need a large team of the best alternative medicine doctors in the country to treat this disease. The disease effects so many things. An alternative is finding a functional medicine doctor who knows something about the disease. Insurance usually doesn't cover them.

    I've had this disease for over 55 years and still there are a dearth of doctors who know anything about the disease. I live in central florida and I'd have to travel a hundred miles to find something even close to a doctor who knows this disease. I lived in massachusetts before and I needed to take a plane to get to a specialist. there may be a few more now than ten years ago.

    Third if your financially strained, you will have to depend on advice here, inform yourself and consult with your local doctor who may give you bad advice. I'd find a ME/CFIDS specialist or an alternative heath doctor you could skype with for 15 minutes to minimize travel. Traveling is always difficult for sick people.

    If you educate yourself - i know it's hard with the cognitive dysfunction of this disease - over time you could become your own doctor and use outside doctors sparingly.
     
  3. Valentijn

    Valentijn WE ARE KINA

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    Expensive testing is not needed to diagnose ME/CFS. An expert can certainly help with it, but the testing run would be to look for abnormalities to treat, not diagnosis itself. A good read of the Canadian Consensus Criteria or International Consensus Criteria are a good starting point, but basically there should be post-exertional malaise (PEM) starting around 24 hours after exertion. PEM features an exacerbation of neurological, autonomic, immunological, and muscular symptoms.
    One mainstream ME/CFS specialist is quite sufficient for most. If people are seeing several practitioners all for ME/CFS, it's usually because they are not ME specialists and are only focusing on a single symptom or system.

    There's no need to make it sound like a diagnosis and treatment have to be incredibly complicated and expensive.
     
    JaimeS likes this.
  4. lnester7

    lnester7 Seven

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    @Valentijn Well I need the CFS specialist and the OI specialist. If you do develop OI the ME doctor might not be the best to treat that, they will recognize it but you will need somebody with experience to find the right combination of Meds.

    @DCinWV I am in the same situation, there is somebody in Charlotte, NC but I end up traveling to Florida and is still cheaper than close by. Also for the dysautonomia (OI) you have Ohio, Cleveland Clinic.

    I am also looking for somebody closer by w no luck so far.
     
  5. prioris

    prioris Senior Member

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    This disease can have hundreds of symptoms. Combine ME/CFIDS with FMS and many other secondary disease offshoots and you have a nightmare. There are a spectrum of severity. there is no one doctor that can treat such cases. Conventional medicine doctors are too incompetent and too ill trained to treat this disease. For some people it isn't a complicated disease. For the ones that have FMS and many other secondary associated diseases with it, it is. If one has a lot of other secondary offshoots from this disease, one guru doctor isn't going to cut it. Finding just one guru doctor will be very difficult.

    Personally I have had to deal with massive number of symptoms. In the end, it was me who searched out the solutions to many health problems. It wasn't any doctor. A good alternative doctor can build in some good frame work but that is probably all.

    For the ones who haven't sprouted all those other secondary conditions then maybe one doctor could do.

    For dysautomia, here is someones story
    http://forums.phoenixrising.me/index.php?threads/i-think-earthing-cured-my-dysautonomia-pots.24992/

    In the end, the cobble together whatever you can
     
  6. Cshell

    Cshell

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    I am also in WV. My family physician has sent me to the Cleveland Clinic in 2008 where my OI was diagnosed, but really they just said to up my salt intake, wear support hose, and take (I think it was) Florinef. My Dr has sent me to every specialist known to man to try to rule out other things. I don't think there is a rheumatologist close to me who is good with the unusual/difficult. I've had this for 20 years.
     
  7. prioris

    prioris Senior Member

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    20 years .... well you should know by now that it is all up to you to figure it out
    i have figured out the cure and management of many things over the years
    outside of accidents and birth defects etc, conventional medicine is a dead end
    My advice is to do your own research and look for natural or alternative cures you can implement yourself.
    It takes persistence.
     
  8. DCinWV

    DCinWV

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    Thanks for everyone who responded. I don't have insurance that will pay out of state. I'm mainly wanting to see a specialist because now that my family doctor has decided that I have CFS she has stopped looking for anything else. I'm not saying I don't have CFS because I might well have it but when I take my doctor articles of medicines that have helped people, i.e. antivirals, in the past she doesn't have me try any of them. It just seems that IF I have CFS, she would try somethings that have helped other people with CFS. Instead she just said for me to see a rheumatologist but I've been unable to find any around WV that want anything to do with CFS and have no idea where to look out of state.

    The only thing I know for certain is that I keep getting Epstein-Barr Virus and I'm tired most of the time and feel sick most of the time.

    I'm new to all of this so I don't know what OI stands for.
     
  9. prioris

    prioris Senior Member

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    Dr Jacob Teitelbaum is located in Glenburnie Maryland the best i can determine.
    I would choose him if I lived in West Virginia and wanted to go to an out of state doctor.
    Of course, your financial resources and particular situation will dictate what you can do.

    OI = Orthostatic Intolerance

    Orthostatic intolerance (OI) is the development of symptoms when standing upright which are relieved when reclining. There are many types of orthostatic intolerance. OI can be a subcategory of dysautonomia
     
  10. DCinWV

    DCinWV

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    Thank you. I'll see if my doctor will refer me to Dr. Teitelbaum.
     
  11. Denise

    Denise Senior Member

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    @DCinWV - you might want to explore other threads on PR (and elsewhere) where Teitelbaum and his methods and clinics are discussed. There are differing opinions about him and his work.
     
    Valentijn and Sushi like this.
  12. prioris

    prioris Senior Member

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    Some people can't cherry pick their doctors. You may want to suggest some other ME/CFIDS specialists who are in close proximity to her so she has something to compare him too.

    There is no perfect ME/CFIDS specialist but I think on the whole he can probably help her more than most. She should call Teitelbaum up to see what the waiting time to see him is. If it is long, she could make the appointment before she sees her doctor then cancel it if she can't be referred. She should do the same if it is a different one.
     
  13. Denise

    Denise Senior Member

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    You are certainly entitled to your thoughts about Teitelbaum being able to help.

    Giving the complexity of ME, I feel it is worth checking out the work of the healthcare providers one is considering, what others think of them, what sorts of illnesses they treat, and so on.
    I believe there are lists of specialists or people patients see in other threads on PR. As you may know, ME specialists are few and far between in all parts of the US (and as far as I know in the rest of the world as well).
     
    Valentijn likes this.
  14. prioris

    prioris Senior Member

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    she may not be healthy enough to dig them out. just scoop out a couple you think are better or even some random alternatives that are geographically close to her.
     
  15. Sushi

    Sushi Senior Member Albuquerque

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    Well, not entirely these days. There are quite a number of testable abnormalities that are considered indicative of ME/CFS. In the last few years the possible/probable list of biomarkers has increased.
    Please do your own research on patients' critiques of Dr. Teitelbaum @DCinWV. He is controversial to say the least and some have said that they have been harmed by him.

    Being in a somewhat isolated area, you might read this forum for ideas of things you could try without a doctor's intervention. Also, as @Valentijn mentioned, your own study of the CCC can perhaps give you a better idea of whether this diagnosis fits you, as opposed to your local doc's opinion.
     
    Valentijn likes this.
  16. prioris

    prioris Senior Member

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    There are shortcuts to diagnosing. Test only key markers that are common to the disease e.g. natural killer cell levels (nancy klimas) etc.

    The AT HOME test you can do is test your balance system. Have someone with you to make sure you don't fall. To do it, walk a straight line about 10 feet with eyes open. Next walk the same line with eyes closed. Most people will be successful the first test. On second test, most will fail. There are two things around or in brain that enable balance.
     
  17. Cshell

    Cshell

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    I tried several antivirals and none helped. Tagamet (cimetidine) was the ONLY thing that helped my 3 month long sore throat and shingles (same family of viruses as EBV). If viral symptoms are your biggest problem, you might want to try it. I think I took 2 pills at a time, 4 times per day, which is much more than the dose on the package. I got the idea from this thread:

    http://forums.phoenixrising.me/index.php?threads/tagamet-cimetidine-for-cfids-worked-for-me.1512/
     
  18. prioris

    prioris Senior Member

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    I will say this about Teitelbaum. When he came out with his book Fatigued to Fantastic many decades ago, that title really made me puke so viewed him negatively. But one has to look at him relative to.the other well known ME/CFIDS specialists who have their taint problems. He will have a lot more treatment remedies than most other specialists i would think.

    There may be less well known ones somewhere that may be good but those need to be googled and searched out. one may be lucky to find a 100 decent doctors in the entire country that really focus on it. I remember when someone ask me where they can find a CFIDS doctor ... I really couldn't advise them especially ones that insurance covers.

    My view has always been to learn to treat yourself by researching and natural remedies especially if your chronically ill. Farm out very specific tasks you can't handle to whoever you can find.
     
    Last edited: Apr 11, 2016
  19. DCinWV

    DCinWV

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    Thanks again for everyone's input. I'm not sure what I'll do. I did by the book from Fatigued to Fantastic since there were only two or three books at the local bookstore (50 miles away) on CFS. I tried the walking test as suggested above and didn't have a problem with my eyes closed. I guess what I'm mainly looking for on here is some way to figure out IF I have CF. I know I'm tired most of the time and have a few strange recurring problems but I have my doubts that I actually have CF and since my doctor can't figure out what is wrong, CF is a easy way of saying whatever is wrong with me is CF and there isn't anything she can do about it. That keeps her from actually trying to figure out what is wrong and treating me for it. IF I can convince here that I don't have CF (if I truly don't) then perhaps she would stop trying to use it as a "catch all".
     
  20. Denise

    Denise Senior Member

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    @DCinWV -
    I don't know if you are aware that chronic fatigue (CF) is not chronic fatigue syndrome (CFS).

    In 2014 the Institute of Medicine convened a panel to develop diagnostic critieria for “ME/CFS”. They also came up with a new name for the disease. Systemic Exertion Intolerance Disease (SEID). While the criteria have not been validated, they may be of help to you.

    In 2015 the IOM released this Clinician's Guide (you might take this to your doctor):
    http://www.nationalacademies.org/hmd/~/media/Files/Report Files/2015/MECFS/MECFScliniciansguide.pdf

    as well as this on key facts:
    http://www.nationalacademies.org/hmd/~/media/Files/Report Files/2015/MECFS/MECFS_KeyFacts.pdf

    The full report is here:
    http://www.ncbi.nlm.nih.gov/books/NBK274235/

    If you are (physically/cognitively) able to, you might want to read Thirty Years of Disdain – an excellent resource. https://dl.dropboxusercontent.com/u/89158245/Thirty years of Disdain - Summary.pdf

    This http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf is a very good resource about orthostatic intolerance.
     
    prioris likes this.

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