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Klimas cfs clinic

Discussion in 'ME/CFS Doctors' started by leaves, Mar 18, 2010.

  1. leaves

    leaves Senior Member

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    Yes I am happy. nothing spectacular but I think at least I have some perspective of getting a bit better. Probably in a few weeks I will sleep better, (maybe I will start dreaming again...) the immunovir will also make me a bit better in 3 months or so. And then the LDN I am taking now, makes me also a bit better. Small steps, but it makes life much more positive.
  2. serenity

    serenity Senior Member

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    Austin
    i would love to have learned all you did, i dont' even know how to go about it. a doc who understands it all is a rarity as you know.
    congrats!
  3. Rrrr

    Rrrr Senior Member

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    ditto to what danib wrote. i WISH my doc knew all this stuff. is there any way someone could post somewhere all the things dr klimas looks for, so we can get those same tests done at home, here, with our own doctors?

    does she have a list of tests she recommends? and how to interpret the test results?

    leaves, i'm so happy for you to be getting this type of support and attention from someone so knowledgeable!!!

    strange how she has chilled on xmrv tho.

    xxoo
    rrrr
    Ocean likes this.
  4. leaves

    leaves Senior Member

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    Hey Rrrr.
    That depends on your complaints too. for me the sleep study, lyme en co, cyptovirus, hvv6, and vit d, thyroid, endocrinology and all the immune stuff.When I have time and energy I will try to post more specifics.
    But frankly I think it boils down to LDN, immunovir and a sleep med for people with bad sleep (most of us).
  5. Rrrr

    Rrrr Senior Member

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    i have the ldn and will re-try it soon. when i tried it once, a tiny dose, i was flattened for 2-3 days. next time i try it, i'll start at a sprinkle dose.

    i am ignorant about immunovir. will research it.
  6. leaves

    leaves Senior Member

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    yeah just slowly build up. I started 2 mg 3 wks, then tmw 3mg 3wks and then 4.5 mg. But I am not so sensitive as many are. started withheadaches, but these are gone. Still sore throat andmuscle pain, but im sure that will go over time.
  7. Rrrr

    Rrrr Senior Member

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    and have you felt any cfs-symptom relief from the LDN? anything better since taking it? i know two PWCs who are markedly better from taking it.
  8. leaves

    leaves Senior Member

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    Yes my sleep quality has improved somewhat, and I need less sleep. But I think that it will get better when I can increase the dosage even more
  9. serenity

    serenity Senior Member

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    Austin
    agrrrrreeing with RRRR - strange how she has chilled on the XMRV.
    ???
  10. Rrrr

    Rrrr Senior Member

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    when you get a chance, do tell us what the sleep med is. i was on a tiny dose of liquid doxepin for years. it helped. but i don't need it any more since going on the Rich Van K "simplified methylation" protocol, coupled with some yasko recommendations (Nettle, Chamomile, Gaba, Magnesium Citrate, Theanine, 5HTP, and others).
  11. leaves

    leaves Senior Member

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    Yes, DOXEPIN, that was the name of the med she wanted to give me!!! 10 mg every night.
    I was just reading about it; weight gain, excessive hunger... hmmmm that doesnt sound like something I want to have.. did you notice any of these?
  12. Lesley

    Lesley Senior Member

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    My daughter is on doxepin. It's a tricyclic antidepressant, but isn't used much for depression anymore. The starting dose for depression is MUCH higher - 75-150 mg. The dose for insomnia is a tiny fraction of that, so you shouldn't have to worry about side effects.
  13. leaves

    leaves Senior Member

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    Thanks Lesley,
    That is good news. I have had phases of excessive hunger, its one of my symptoms and I really hate it. Wonder where it comes from.
    I was also considering taking 5 htp but apparently if you have high inflammatory cytokines they feed on serotonine or something?
  14. serenity

    serenity Senior Member

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    Austin
    i am on Doxepin. i have gained some weight recently but do not know if it is due to meds or increased food intake. the docs all got on me to gain weight so i did start eating more.
    Rrrr - i have a friend who was just put on Gaba & 5HTP by her acupuncturist & is doing well on them, but i am worried about taking them ... they do not interact with anything?
  15. calzy

    calzy Senior Member

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    Naples Florida
    Doxepin saved my life, at least night life...could not go without it. No weight gain problems, maybe they are talking about very high doses. Cheney started me off with 3 DROPS 11 years ago, now Im up to eight mgs...so start out very low. can give you "hangover effects".
  16. Rrrr

    Rrrr Senior Member

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    i was on 5 ml of liquid doxepin for about 15 yrs and it helped with sleep. sometimes i could take less. you may not need 10 ml, leaves. but it takes a few weeks to kick in, i think.

    i did not have weight gain with it.

    dani: i have not found 5htp and gaba to mess me up in any way, unless i take too much gaba. then i get weepy. but everyone has to test it for themselves. i am on tiny dose of both.

    rrrr
  17. leaves

    leaves Senior Member

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    Thanks so much guys and girls!! Very helpful :) I think I'm going to give it a shot.
    You are awesome:hug::hug::hug::hug:
  18. Rrrr

    Rrrr Senior Member

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    i think you can't be on SAM-e while on doxepin. just fyi. check it out, as i may be wrong on this.
  19. serenity

    serenity Senior Member

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    Austin
    thank you Rrrr this is very helpful to me as i am weaning off of Lexapro right now due to side effects i couldnt' take & want to be able to take the Gaba if i need it.
  20. aquariusgirl

    aquariusgirl Senior Member

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    anyone seen dr irma Rey, colleague to Nancy Klimas?

    HI
    I am on a wait list to see Nancy Klimas, but according to Gregg, I could be waiting a year for an apptment, so I called to check this and was told I could see Dr Irma Rey, a colleague of Dr Klimas in May.

    Marta, Nancy's secretary/gatekeeper/whatever, does not give up ANY information. That woman could work for the CIA!!

    I could not get out of her how long the wait for nancy klimas is. Does anyone know for sure the latest estimates?

    Also, is it worth seeing Rey? Anyone seen her and can comment?

    Apparently it would only be a 90 minute consultation...whereas I thought it was a half day thing with them running tilt table tests, etc?

    Wondering if it's worth flying down there for that?

    TIA

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