cfs: complete deterioration

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, May 22, 2009.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i am the worse i have ever been right now. feverish, joint pain, extremely severe brain fog, neck pain, swollen head feeling....utter and total hell. i don't know what is going on. i think i have developed resistance. don't know what to do. no one knows about the disease here. very scared.
  2. tennisnut

    tennisnut New Member

    I know that "being on the edge" healthwise, it just takes a cold germ (I don't know if I would get through a flu). When you feel pretty rotten most of the time, it takes a while to realise that you are dealing with a new problem. When I am feeling under attack I try to sleep, if not rest, all day until feeling better, plus lots of water. I hope you can get an improvement. Best wishes, TN
  3. outofstep

    outofstep Member

    you may have caught it-if you get a high fever or trouble breathing be sure to get yourself to a hospital so that you can get treated
  4. TeaBisqit

    TeaBisqit Member

    Rest alot. That's the only thing that ever really helps. Lots of rest.

    I'm going through something similar. Total downswing, I can't kill the fevers and my glands are swollen again. Doesn't ever seem to end, does it. Lots of hugs.
  5. ladybugmandy

    ladybugmandy Member

    thanks guys for your kind posts. i woke up just now drenched in sweat and shivering (i was kind of hoping i wouldn't wake up at all but i did). going to hospital here is futile.

    this has happened before and dr. lerner always tells me to stop valcyte immediately so that is what i will do. i will get even worse than this but oh well...

    will wait for artesunate (approx. 10 days) and try it for a couple of months. if it doesn't work, i will try to arrange for the IV infusions of antivirals but it doesn't look feasible due to cost.

    to think that 2 months ago i was sure i was better!

    thanks for following my story....


  6. DavidJ.

    DavidJ. New Member

    hey there ,

    oh your name is sue... i accidentally thought your name is mandy in my last post , sorry :)

    i havent read all your topics, what kind of infection do you have? hhv6 or ebv, or both?

    i am still baffled by the fact that there are so many americans who have cfs. when i read the study about valcyte with 9 from 10 persons getting well again or something like that, i assumed that most of the u.s patients would get healthy again.

    i hope you will feel better soon :)

  7. SpecialK82

    SpecialK82 New Member

    Hi Sue :)

    So sorry to read your post, I feel for you not only physically but probably more important psychologically. Having good days and feelings of getting better just make these crashes all that much worse.

    First of all, and most importantly, hang in there. You have been on many ups and downs so you know that you can go back up again. I'm sorry I have not been up on all the posts lately - I know you were thinking of leaving Dr. Lerner, it sounds like you did. Because this has happened before, you probably have a good instinct about stopping Valcyte, I know it is a scary decision.

    I agree going to most doctors or the ER is useless. It is so hard for us to be our own doctors but that is what we are many times forced to do, it is unfair and cruel.

    Hopefully you will feel better in a few days and return to yourself again - I will be praying for you.

    Love, Kristina
  8. DavidJ.

    DavidJ. New Member


    i just read some other posts from you sue. you have hhv6, right?. i know that feeling very well because at first i "only" had a hhv6 infection, when i had a relapse a few weeks ago , i also had ebv ! i dont know what virus is worse , but to me the hhv 6 is responsible for the nausea and the brain fog . but thats just my opinion...
    [This Message was Edited on 05/23/2009]
  9. ladybugmandy

    ladybugmandy Member

    thanks everyone. specialk...i actually didn't leave dr. lerner...i have an appt this week but might be too till to travel. i don't really see the point in continuing with him either at this point. how are you doing?

    david....i assume HHV6 is my main problem but no one really knows. sometimes i think they will only find out for sure on autopsy.

    turns out there is no way i can get IV antivirals. my insurance company won't pay for the drugs unless i have more evidence of active infection and then i would have to have the infusions here anyway. i cannot pay for it all myself to have it done in MI...

    there isn't even a doctor here in canada who is willing to prescribe ampligem.
    [This Message was Edited on 05/23/2009]
  10. DavidJ.

    DavidJ. New Member

    dear sue,

    didnt you have a blood test? my doctor sent my blood to a special lab, and they search for hhv6 and ebv and all the other viruses, that can cause cfs. i mean that would be helpful with regards to your health insurance company.

    in my case it was very important to know it because these homeopathic antivirals are prepared with infected tissue of either hhv6 or ebv .

  11. ladybugmandy

    ladybugmandy Member

    i have had antibody and PCR testing for EBV and HHV6 and culture antigenemia test for HHV6. the only thing that was found was slightly elevated antibody titres.

    maybe things would be different if someone did a spinal tap and tested the spinal fluid....
  12. m1she11e

    m1she11e New Member

    So sorry for what you are going through. I know what it is like to not be sure what the answer is and you just want to FEEL BETTER! You have tried so hard and stuck to your belief in anti virals more than I think anyone would.

    I am curious about details about how your are getting these homeopathics made for your Virus.
    Im not sure how I feel about the anti viral drugs so far...

  13. DavidJ.

    DavidJ. New Member

    hey again,

    (spinal tap) hm, i dont know! if it is what i think it is, then my father had to endure this once and he said it really hurt. i hope you have a better option than that :)

    next time i see my doctor or my naturopath i will ask them , what kind of blood test is needed and if there can also be an infection without high antibody titers. i remember that my naturopath once mentioned something like that...
    i mean how can you get these symptoms without a severe virus infection? did they also test you for lyme-disease?

    [This Message was Edited on 05/23/2009]
  14. DavidJ.

    DavidJ. New Member

    hey michelle,

    the medication is produced by my naturopath herself. it looks like the typical homeopathic remedy, you know the white "globules" , right? i hope this is the correct term for it in the u.s .
    but like i said earlier, she isnt a normal naturopath, she is also an educator about homeopathy and diseases. my doctor sent me to her actually. i went to see a normal naturopath before but she was as clueless as most of the doctors ...

    america is such a big country, maybe you have homeopathic pharmacies who can produce it? or you could write to the best-known naturopaths in your country, there must be someone who can produce it.

    like i said in my last topic, i am not bedridden anymore, but i am still sick and have to be patient...

  15. ladybugmandy

    ladybugmandy Member

    i am sure a compounding pharmacy could produce anything you want with a doc's prescription...

    re: spinal tap...yes..the most painful medical procedure i believe....but if i can endure 18 yrs of CFS i am sure i can endure that!

    i realized my mycoplasma pneumoniae titres in the last 3 tests were somewhat elevated but not elevated enough to treat, according to dr. lerner. i am going to request another one and see if it has risen. it has been rising steadily. perhaps antibiotics will help me?

    at least i have a few things on the horizon: artesunate, possible antibtiocs and possible lumbar puncture. i am hoping i have a few years left before i develop cancer. i hope it doesn't take too long until CMX001 (oral cidofovir) is on the market.

    if only i could stand this discomfort...
  16. DavidJ.

    DavidJ. New Member

    hey sue,

    you dont need a prescription for homeopathic remedies :)

    i know how desperate you are , if you even want to do this spinal tap. and thats just because of the insurance company right? my insurance company doesnt pay anything, but the treatment costs at my naturopath are nothing compared to 6 months valcyte ...

    as to cancer: yes, my naturopath told me that hhv 6 is the virus that also causes multiple sclerosis. but like you said , your antibodies to hhv 6 are not that high and maybe you have rather ebv .

    did you read about my question as to lyme disease?

    and mycoplasma pneumonia is new to me, can it cause cfs?

    [This Message was Edited on 05/23/2009]
    [This Message was Edited on 05/23/2009]
  17. ladybugmandy

    ladybugmandy Member

    thanks for your post. i have canadian insurance but they do not know anything about CFS here. i pay for everything in the states out-of-pocket. my valcyte is covered under my canadian drug plan but that plan expires in feb of 2010 because i am no longer working.

    i have some ebv and am on 4 g of valtrex a day for it. i have been tested a few times for lyme disease and it is always negative.

    to be honest, i am not sure that anyone knows what i have. all i know is, i became ill after EBV infection and never recovered.

    there are many types of mycoplasma and they can cause CFS. it is bacteria and is treated with antibiotics.


  18. DavidJ.

    DavidJ. New Member

    ok sue,

    i once had to use antibiotics but it didnt help me, if you dont have any side effects maybe it can do something for you. have you tried antibiotics before?

    so you always have to travel to this doctor in america? what for? do you have to pay him ? here in germany, we pay 15 dollars every 3 months and we can see a doctor everytime we want to, that helps a lot...
    [This Message was Edited on 05/23/2009]
  19. Pansygirl

    Pansygirl New Member

    I just wanted you to have a very gentle hug

    I agree please rest and drink lots of water.

    please know your in my prayers to feel better.

    Keep us posted . Take care, Susan
  20. ladybugmandy

    ladybugmandy Member

    thanks for the good wishes and prayers, guys. they mean a lot to me. are free here in canada but they dont know about this disease. i travel to america and my mother has been paying for the doctor and all the testing.

    i tried an antibiotic for a couple of months at one time but absolutely nothing happened - no reaction at all. but i am wondering if maybe the mycoplasma may be active now?

    kelly.....i have a very strong feeling its the HHV6 spreading. everything fits - the extreme neurological problems, the improvement on valcyte followed by the decline, etc.

    i am trying to make myself feel better, telling myself that maybe, just maybe it is herxing...but this late in the game? i just can't imagine it. even dr. lerner didn't suggest that.

    i wish i could trust dr. lerner to be completely up front with me (although when levine was up front i didn't really care for that! lol) dr. lerner claims the up-and-down is normal but not like this!? it should be a steady, slow improvement....but then..this disease doesn't seem to follow any rules, and i have had it so long....

    i haven't modified my treatment in any way.

    i suppose the best thing would be to arrange for a lumbar puncture and have the CSF sent to viracor...but my antibodies are not that high. i wouldn't be surprised if there is nothing in the spinal fluid but a lot of virus in the tissues.

    going to india for cheaper testing is an idea (i am indian) but i am just too sick and its just too hot and dirty there. why didn't i think of these things before i became this sick!?

    i still haven't had the energy to look into enteroviral testing either....

    i wonder why my RNase L went down...i wonder what it is now....