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She tested possitive for lyme and bartonella on test about a year or two ago....On subsequent tests they were negative. I learned that if a person only tests once for bartonella, they have it and it should be treated aggressively. OK, so I am treating it. Now all of these viruses are showing up. She was put on valtrex by Dr. T., but from what I have heard, viruses can't be treated. There dead. So I am wondering why he put her on valtrex. I have phone consult on Thursday, but just wondering....And how did get all of these viruses at birth???? She was sick from first day of life. I am going to get checked. Probably from me, I am guessing, right? Also...is bartonella the culprit, and all of these viruses are just able to bombard her because of the bartonella? I am trying to understand all of this. She probably has parasites too!!!! Thanks.

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This information is from Mayo's website, sorry it is so dense:

 

In another study, Dr. Aksamit investigated herpes simplex encephalitis (HSE), a neurologically devastating illness associated with substantial morbidity and mortality in adults and older children. Recognition of HSE, and distinction from other forms of encephalitis, brain abscess or mimicking disorders early in the course of evaluation facilitates early treatment, which can prevent disastrous neurologic complications. The combination of clinical characteristics, magnetic resonance imaging of the head, and polymerase chain reaction (PCR) analysis of cerebrospinal fluid for herpes simplex type 1 DNA is a sensitive and specific way of diagnosing HSE for proper treatment. HSE is treated with acyclovir 10 mg/kg every eight hours intravenously for 21 days, unless the illness is mild, or nephrotoxicity occurs. Whether prolonged therapy with oral antiviral treatment after standard intravenous acyclovir offers any advantage from the standpoint of neurologic morbidity or mortality is unproven. PCR–negative typical cases and PCR–positive atypical cases of HSE can occur and require treatment with acyclovir. The study is published in Current Treat Options Neurology. 2005 Mar;7(2):145–150.

Several Mayo Clinic researchers (Drs. Aksamit, Castillo, Woodruff, Caselli, Vernino, Lucchinetti, Swanson, Noseworthy, Carter, Sirven, Hunder, Fatourechi, Mokri, Drubach, Pittock, Lennon, Boeve) investigated steroid–responsive encephalopathy associated with autoimmune thyroiditis (SREAT), often termed Hashimoto encephalopathy, a poorly understood and often misdiagnosed entity. Their goal was to characterize the clinical, laboratory, and radiologic findings in patients with SREAT to potentially improve recognition of this treatable entity in a retrospective analysis of clinical features and diagnostic test data. These researchers found that the clinical, laboratory, and radiologic findings associated with SREAT are more varied than previously reported, andmisdiagnosis at presentation is common. This treatable syndrome should be considered even if the serum sensitive thyroid–stimulating hormone level and erythrocyte sedimentation rate are normal; the cerebrospinal fluid profile does not suggest an inflammatory process; and neuroimaging results are normal. Until the pathophysiologic mechanism of this and other autoimmune encephalopathies is better characterized, they conclude that descriptive terms that reflect an association rather than causation are most appropriate. The study is published in the Archives of Neurology. 2006 Feb;63(2):197–202.

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Mine has HHV-6, EBV, coxsackie (see sig for which), and high titers for all the immunizations especially rubella. Where they get this stuff from I am not sure. I am seeing her immuno on the 25th and I am going to ask about Virastop 2. Kiddo is already on amantadine for rubella. I just asked him today about acyclovir, for both the rubella and coxsackie, but he feels nothing much touches coxsackie. We will talk about it more at her appt.

Edited by Mayzoo
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The LLMD SF Mom suggested to you, he is near you and frankly, one of THE best, has a new book coming out:

 

http://www.lymebook.com/why-cant-i-get-better-solving-mystery-lyme-chronic-horowitz.htm

 

He describes Multiple Systemic Infectious Disease Syndrome -

Basically, the immune system is shot down with infections, allowing more to come in, need heal in layers....

Not unusual for chronic Lyme and co-infection bodies to also have viruses running high and rampant-

our LLMD had the perspective get the bacterial infections under control,

then the body can deal with the viruses.

Different thoughts on this-

Also, thinking now seems to be treat parasites first.

Hang in there-

Hope you can get the poor girl sleeping regularly soon.

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Most everyone has deactivated viruses. When the immune system is not working properly they become reactivated. The anti-virals my son has been on (Valrex and Valcyte are two) prevented viruses from replicating. After 4 mos. on Valcyte last year son had 6 weeks of 'feeling better' then relapsed. Had a bad bike wreck and dental work and other things that were part of it.

 

Now we are trying Valcyte for 6 months ($174/month with insur.) along with gcmaf. He is once again feeling better and ART testing healthy. Second time in 3 years. We have our fingers crossed that it will continue.

 

Treating viruses aggressively has been the last step in treatment. We did treat with Valtrex while doing lyme treatment

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trintiybella,

 

Has she ever had Flagyl? When my son was in crisis and we also suspected BART Flagyl was a saving grace.

 

I can't tell you what a miracle drug it was for my son. This was after years of doing well on just Azithro. He had a swollen lymph node behind his right ear for 2 and half years and then when he took flagyl for 21 days with one week break in between and then a second go around the lymph node disappeared in addition to the suffering from neuro psych symptoms. I still have too use the flagyl on him occasionally because he will relapse somewhat but at least it gives him relief for long periods and the fact that the lymph node went down tells me it treated something.

 

Good luck finding some healing for your DD. Its heartbreaking how much these kids suffer.

 

If she cannot sleep have you tried 5 http and melatonin liposomal it works fast.

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