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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 7 of 7. This is the beginning of the thread.
Posted by Lorraine on April 9, 2002, at 16:06:27
This is Lorraine. I was recently tested for and confirmed to have chronic fatigue syndrome (which is just a collection of symptoms) except that I had high titers of 4 viruses (Ebstein Barr, Cytolomega, HHV6 and HSV2) and a low natural killer count activity level of 11 (most people are over 40 and the low end of the range is 20). Anyway, nother test and I'm positive for Lyme disease--late stage. Not a pretty picture. Not so difficult to treat early but late stage has CNS involvement and can put people in wheel chair, make them deaf etc and, of course, mimic depression and anxiety and sometimes even psychosis. Get the test. You will have to pay for it on your own, but get the test and rule it out. I am eight years (and 51 drug trials) into this madness to be finding out that I've been chasing the wrong train perhaps.
Lorraine
Posted by shelliR on April 11, 2002, at 12:39:08
In reply to Rule out Lyme disease please! , posted by Lorraine on April 9, 2002, at 16:06:27
Lorraine,
I was just thinking about you and hoping that you were maintaining your progress on provigal. I am sorry about the lyme disease diagnosis: that it wasn't brought up before. Are you treating it like
other immune disorders, or is the treatment entirely different?I truely believe you have both the resiliency and support to beat this.
Best wishes (I was just telling someone about our thread: you and I and Elizabeth's that went on for months and felt like a private thread in public). And gave us a bond.
Shelli
Posted by noa on April 11, 2002, at 15:58:07
In reply to Re: Rule out Lyme disease please! » Lorraine, posted by shelliR on April 11, 2002, at 12:39:08
Hi. Thought I'd stick this in here as an FYI---Just read on BioMedNet that a recent study found that more cases than not of Lyme disease did *not* have the so-called telltale bullseye rash. So maybe there are more undiagnosed cases out there.
Posted by Lorraine on April 11, 2002, at 21:59:25
In reply to Re: Rule out Lyme disease please! » Lorraine, posted by shelliR on April 11, 2002, at 12:39:08
Shelli! Nice to hear from you again. Lyme disease is a bacteria transmitted by ticks (you know this)--I've probably had it for 8 years. Anyway, you see a Lyme Literate MD (someone who just does Lyme). The guy I am going to see is the son of the man who owns one of the highly regarded specialty labs that tests for lyme and he also had lyme himself. This person will work with my MD to help me treat it--I suspect that it will mean intravenous antibiotics for a period of time 6 weeks or more, then oral antibiotics for another period (maybe life). I was never tested for it before. But after the chronic fatigue diagnoses (which basically just said "you have a ton of viruses out of control in your body and your immune system sucks", I asked my doctor if we had ruled out Lyme. So she ran the test and called with the results. I meet with the specialist on the 26th.
It mimics lots of mental illness so especially for those who are treatment resistant and not childhood onset really ought to be ruled out. Here on the west coast, there is not a lot of awareness about Lyme. Thank-you for your kind words of encouragement. I think all of us on this board (and I know you in particular) have a lot of endurance.
I'll keep you posted.
Lorraine
> Lorraine,
>
> I was just thinking about you and hoping that you were maintaining your progress on provigal. I am sorry about the lyme disease diagnosis: that it wasn't brought up before. Are you treating it like
> other immune disorders, or is the treatment entirely different?
>
> I truely believe you have both the resiliency and support to beat this.
>
> Best wishes (I was just telling someone about our thread: you and I and Elizabeth's that went on for months and felt like a private thread in public). And gave us a bond.
>
> Shelli
Posted by Lorraine on April 11, 2002, at 22:01:59
In reply to Re: Rule out Lyme disease please!, posted by noa on April 11, 2002, at 15:58:07
You are right Noa. I think they say the rash is only present in about 10% of the cases now. I think everyone should be tested (not surprisingly).
Lorraine
Posted by shelliR on April 11, 2002, at 22:18:10
In reply to Re: Rule out Lyme disease please! » shelliR, posted by Lorraine on April 11, 2002, at 21:59:25
Hi Lorraine,
<< This person will work with my MD to help me treat it--I suspect that it will mean intravenous antibiotics for a period of time 6 weeks or more, then oral antibiotics for another period (maybe life).>>
Will you need to go to the hospital to get the
intravenous antibiotics?
<< I was never tested for it before. But after the chronic fatigue diagnoses (which basically just said "you have a ton of viruses out of control in your body and your immune system sucks", I asked my doctor if we had ruled out Lyme.>>And doctors wonder why we don't just lay back and let them diagnose us. Why we are so assertive and don't believe that doctors are gods.
> I'll keep you posted.>Please do,
Shelli
Posted by Lorraine on April 13, 2002, at 12:02:46
In reply to Re: Rule out Lyme disease please!, posted by shelliR on April 11, 2002, at 22:18:10
Shelli: I think these days IV means a nurse comes to your home once a day to hook you up although a semipermanent IV thing is planted in your skin. I do think it is worth while to do the sort of functional analysis I was doing--which is a lot like the Antidepressant Survival Program. I think my psychotropic emphasis switches to drugs which are neuroprotective and neurorestorative.
Lorraine
This is the end of the thread.
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