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Louisiana-desperate for CFS-aware primary care

Discussion in 'ME/CFS Doctors' started by Meena, Nov 29, 2017.

  1. Meena

    Meena

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    I am a patient in Baton Rouge, Louisiana. I have gone through 3 primary care doctors since 2010. None of them will even say the words "Chronic Fatigue Syndrome." The current one keeps asking if I'm seeing "my psychiatrist for the CFS and doing my regular exercise routine."

    I personally do not prefer the nutritional-based medicine approach. So far I have only found one doctor accepting CFS and they take this approach.

    All this time Dr. Charles Lapp, who is retiring, has kept me going.

    Anybody out there this way?
    Thanks so much.

    Meena
     
  2. overtheedge

    overtheedge

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    I've been seeing Dr. Stephanie Cave who has her office right outside of baton rouge, I live hours away so after a point I've just been doing phone consults with her and getting any stuff I need shipped to me. She is really expensive though since a lot of her stuff isn't covered by insurance, although, her being willing to sit down and discuss the specifics of health issues for hours is something I'd rather be paying for even if it costs a lot, that is, as opposed to a brief visit with a standard practitioner which usually wont amount to much since it takes time to understand a complex issue like CFS.

    Many of the supplements she recommends are much cheaper on amazon, though maybe of lower quality, maybe not, though some of the supplements she offers can only be had through her or similar doctors since companies like xymogen and designs for health only sell through doctors far as I know, one such supplement that she advised me to take, a herbal combination supplement called testoplex that I couldn't find any online seller for, corrected the low testosterone levels I used to have which worked great as I didn't want to try any prescription hormone therapies or anything. Unfortunately the fore mentioned supplement has ingredients I can't take on my present diet so I hope it corrected the testosterone permanently.


    The tests Dr Cave runs you could get much cheaper if you find another practitioner who will accept insurance for them, assuming your insurance is willing to cover the test. There are some internet services like integrative psychiatry who will let you order tests with insurance so long as you do a brief phone consult with them, although, I don't know that any doctors who don't already offer insurance on tests would be happy to have you bring them tests from elsewhere when they were the ones who recommended them to you. I have had times where I went several months without an appointment with her in which I ordered some tests from elsewhere and she didn't seem to mind that so I dunno. I've heard a lot of docs don't offer insurance coverage on these functional medicine tests because of complaints from patients who had their insurance companies reject paying for these sort of tests and the complications therein. The first appointment with Dr Cave cost over $1000, a lot of that from medical tests, and a bit too from the barrage of supplements she started me out with

    I will say she has really helped me by recommending the SCD diet which I've been following lately and getting consistently outstanding results, I tried the SCD years ago but didn't stop taking the supplements I was on at the time and, at least as I figure it, as a result the diet never did anything


    The various things she has had me do:

    adrenal cortisol test, came up normal but seems like a very sensible test for any with cfs

    Genova's hydrogen/methane breath test for SIBO which came up positive, that is what led me try the SCD again and really focus on it, also gave me antimicrobials for the gut which I have yet to take as the diet has been working so well and so I've been trying to focus on it.

    Urine elements test/urine porphyrins test which led me to try many rounds of chelation, don't think that did anything for me although the tests did show some slight improvement. Chelation is one of the most expensive therapies I've tried, although, insurance did cover some of it

    Genova's Comprehensive Digestive Stool analysis, keeps showing gut infections even though I've followed instructions and treated each time with either prescription or herbal antibiotics, the gut infections do disappear but another type of infection takes their place each time, hopefully that will resolve now that I'm getting such great results with the SCD diet. Some of the antimicrobials like berberine and bactrim OS she had me taking made me feel good for a bit and the berberine also corrected some stool issues, then stopped working after a short while. The CDSA test also showed occult blood in stool which I have yet to work on getting resolved, she suggested that it could be a false positive from eating red meat in the days leading up to the test and that a general practitioner could give me strips to test specifically and only for occult blood in stool to save some money on figuring out what is going on. chymotrypsin also came up low on the test, suggestive of low pancreatic enzymes, after supplementing digestive enzymes this corrected. Butyrate was low in stool and so I've been supplementing Ghee butter which fortunately is allowed on the SCD, haven't retested to tell if it has increased butyrate level, butyrate being something very good for the intestinal cells.

    a version of Nambudripad's Allergy Elimination Technique called Bioset which did nothing for me and cost hundreds

    23andme test to get genetic data for Genetic Genie which told me about my SNPs, led to methylation supplements like methyl B12 and methyl Folate among others which I think have been helping me, my high homocysteine level came down within range after starting these supplements and I would be taking them now if not for being unsure whether or not the specific brand of supplements I've got have additives, potentially unlisted additives, that aren't allowed on my diet or not

    that's about it, I like what she has done for me enough to recommend her as I have though if you want to look elsewhere consider doing what I do and find a doc who is a ways from you, perhaps out of state, go in for a first appointment, which might be required to be considered a patient of that doctor, and from then on do phone consults

    All the best
     
  3. Meena

    Meena

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    OvertheEdge,

    Hello, and thank you so much for responding and sharing your personal experience with Dr. Cave. I did not know about her.

    Your very thorough description of her tests and treatments, costs are much appreciated. So often one can get worn out just going to these appointments only to find that the treatment isn't CFS-appropriate or is unaffordable.

    She sounds very attentive and thorough.

    Thank you,
    Meena
     
  4. calsi

    calsi

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    thanks for the info overtheedge i may look into that since i visit family in that area
     

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