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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. vamah

    Heavy metal testing

    Thank you so much. I am leaning towards the lab that doesn't require a doctor's order even though it costs a little more. Honestly, my doctor is a sweetheart and would order whatever I asked even if he thinks it is misguided. But, if it turns out there's nothing, I won't have to admit to him...
  2. vamah

    Heavy metal testing

    I know this must be on the forum already, but I can't find. Does anyone have suggestions for a reputable lab for heavy metal testing of hair? Some o found seem sketchy ( can test sold on Amazon be any good?) but I don't know how to evaluate. Thanks.
  3. vamah

    Feeling better (no herx) = no effect?

    I think there can probably be a number of reasons why you might not experience a die off reaction. If the die off is very gradual, for instance, the reaction might be so mild you don't notice it. I would certainly not discount somthing that makes you feel better because you didn't notice a die...
  4. vamah

    Study: Vitamin B may not reduce risk of memory loss

    Just the title is so equivocal you wonder why bother to publish a study at all.
  5. vamah

    Sense of taste is off

    Anyone else have this? It is not that my sense of taste is dulled, like when you have a cold. And not like, ugh that makes me nauseaous, like when I was pregnant. It is more that things I usually like don't taste quite right to me. The only new things I am taking are olive leaf extract and a...
  6. vamah

    anyone seen or seeing Dr. Enlander?

    Um, I'm pretty sure you are confusing me with someone else. I never made any negative comments about doctor montoya. Before acusing someone of 'total ignorance" you should probably make sure you have the right person. I have always admired montoya's work and would have liked to see him, but I am...
  7. vamah

    EBV Ab VCA, IgG >8 What to do?

    Can you ask your doctor for a test for evb early antigen? This will give an indication whether the disease is active or your result is just leftover antibodies from a previous infection. If you are positive for early antigen that indicates a current infection. If you do have ebv, there are many...
  8. vamah

    Low NK CD57 in the abscence of Lyme

    My understanding is that it is frequently corelated with lyme, but not always. I read that hhv6 can lower cd57 also. This is the case with me where I tested negative for lyme but had very high hhv6 titer.
  9. vamah

    General Survey re: Anti-virals

    I took valcyte for a year for hhv6. My titer dropped from 1:1280 to 1:320 (still considered high) and stuck there, so I stopped taking it. I recently decided to start taking it again because I think I have felt progressively worse since stopping. I never had any major side effects bu I did get...
  10. vamah

    What causes high night-time cortisol?

    Maybe it has to do with the fact that you experience stress throughout the day and so it gets higher. The, in the morning after you have been sleeping, it has decreased. Just conjecture on my part.
  11. vamah

    HHV-6 Virus and CFS (need info please!)

    I disagree that the trest you had is meaningless. Yes, most people are exposed to hhv6 as children. What matters is not whether you have a positive titer at all, but how high it is.
  12. vamah

    Avoiding the kiss at greeting MIL

    Ugh. I hear you. My husband's family is full of huggers and cheek kissers and it drives me nuts. Not so much with my mother in law (when she was still alive) because I likked her and knew she did it out of geniune affection. But there is this huge extended family of cousins, most of whom are...
  13. vamah

    What do you say when...

    If these are people asking "endless probing questions" when you have politely attempted to change the subject, the only thing I would say is "goodbye."
  14. vamah

    Serotonin the new 'Cure All'

    Well, I don't think anything is a cure all. I hate articles that make sweeping statement like that. Ssris did help me immensely at I time when I was suffering from severe anxiety attacks/ ocd. I think it helped keep my brain from getting caught in an ever expanding loop of anxiety.
  15. vamah

    New on http://visitingmrssmith.com - Bastard Disease: legitimate and illegitimate illness.

    "Relentless promotion of positive thinking." What a wonderful turn of phrase. I'm going to have get that book. A strangely uplifting book I read recently is "The Fault in our Stars." I was expecting it to be sickeningly ( no pun intended) sentimental since it is about young people with cancer...
  16. vamah

    New on http://visitingmrssmith.com - Bastard Disease: legitimate and illegitimate illness.

    @Misfit Toy This is why I tell almost no one about my health problems. What's the saying about opinions being like holes -- every ass has got one.
  17. vamah

    New on http://visitingmrssmith.com - Bastard Disease: legitimate and illegitimate illness.

    I agree with you about sick people judging other sick people because they are not getting better. I have afriend with similar (but not the same) health issues and I would think that person would be extra understanding of the struggles, self-doubt, depression, etc. that accompany long term...
  18. vamah

    Pets for chronic illness. Has anyone benefited from them?

    I agree that cats are much lower maintenance than dogs and can be extremely affectionate. You might think about adopting an older cat who doesn't get into things like kittens do and would love just to sit beside you and be petted. Older animals always have more trouble finding homes. My daughter...
  19. vamah

    Dimensions of pure chronic fatigue: psychophysical, cognitive and biological correlates in the CFS

    I think it is actually "fucktard", but your version in more polite.
  20. vamah

    Cold Intolerance but no fatigue!

    I have fatigue as well, but I was wondering about your "normal" thyroid tests. There is a lot of disagreement about what is considered normal, so you could be hypothyroid even if your lab says thes tests are in the normal range. When you say your temp is normal, are you taking it first thing in...
  21. vamah

    Lyme Laws State to State

    I'm not surprised at insurance companies refusing to cover things, I've had that issue myself when I was with kaiser many times. What surprises me is that it would be illegal to cover it in an entire state. At least I had the chjoice of switching to different (albeit,more expnsive) insurance...
  22. vamah

    Lyme Laws State to State

    Wow, that's nuts. This is not the case in virginia or washington dc.
  23. vamah

    Lyme Laws State to State

    I had no idea there were states where it wasn't allowed. WTF? My state (VA) has a law that says people have to be told that a negative lyme tests doesn't necessarily mean you don't have lyme, so I'm guessing it is allowed here.
  24. vamah

    anyone seen or seeing Dr. Enlander?

    I'm in the Washington DC area. Over the past 2 years I have had tests for all the typical herpes viruses as well as lyme and bartonella. The only thing positive was hhv6 ( although, you know, lyme testing -- you can never be sure). I was on valcyte for a little over a year, at all kinfsof...
  25. vamah

    anyone seen or seeing Dr. Enlander?

    Thanks so much for your honest opinion. I'm not sure I could do a cookie cutter treatment approach. I already have a doctor who had proscribed valcyte, so I'm not really needing that. Now I wonder if I should try to get on Dr Montoya's long waiting list and hope for the best.
  26. vamah

    Why NOT exercise?

    This was a really good piece. Thanks!
  27. vamah

    Negative ANA

    Does a negative ANA mean I can rule out all autoimmune, or only some?
  28. vamah

    PSYCHIATRIST'S APPROACH TO ME/CFS-BBC PROGRAMME?

    I don't think that a person who was hanging off a cliff by one hand would be told their fear of heights was irrational and they should ignore it. Just saying.
  29. vamah

    Valcyte dangers

    I should have been clearer. I got weekly labs for the first month, then every couple months once the doctor could feel comfortable that srrious side effects were unlikely. Apparently, if something bad is going to happen it will probably be very quickly, but potentially very bad.
  30. vamah

    Valcyte dangers

    I think the cancer risk is theoretical. You have to balance that against the risks of not fighting the virus. If you are not dealing with cmv or hhv6 there are other antivirals that may work but valcyte is the only oral antiviral effective against those. A higher risk is anemia and liver damage...