Anti-virals HHV6 Mono syndrome vs. Lyme

I have had lots of Lyme type symptoms over the past six months, including cardiac involvement, small joint swelling, and Brain lesions. The brain fog is getting scary.

The hard part is two LLMD's think based on my symptoms and IGENEX test I have Lyme. My ID Dr. thinks I have HHV6 reactivated and no Lyme based on four other negative tests. Both have brain infection involvement. I have tried to read one vs. the other to try to figure out what to treat first and its not an easy decision. I have read that supposedly if you have arthritis from Lyme its usually in the big joints, and thus if its fingers and toes (like mine) it may be viral (and not bacterial like Lyme). Also, if you have cardiac involvement and arthritis you have a really good chance of testing seropositive for Lyme, but my four OTHER commercial lab tests all have been negative. The rest of the symptoms between the two are similar, especially if you add on some of the mono type symptoms of CFS/ME.

If any of you know anything about the differences in the two, let me know. I have chosen to not go the PICC line route with Rocephin (after two months of Doxy and Zith with no improvement), to try Valcyte for many months. The two LLMD's don't dispute a possible HHV6 reactivation as many Lymies probably have it as well. Im not sure how you can really test for which one is doing the most damage.

Steroids are not a good choice with an active infection of any kind!!!! So no matter whether it's Lyme or HHV6 - you are not doing yourself any favors.

I treat both at the same time - I really don't understand why anyone can't - unless you only listen to the ID doc that doesn't even believe in the treatments for Lyme or the fact that there is such a thing as chronic Lyme.

" if you have cardiac involvement and arthritis you have a really good chance of testing seropositive for Lyme" I don't have any idea where you heard/saw this, but it's completely wrong. The tests are based on your immune response to the bacteria - they aren't even testing for the bacteria itself!!

The negative test results that you have been getting is because your immune system is being subdued by the Lyme bacteria - this is a well-known issue. If you happen to have Bartonella as well, then your immune response will be even lower and there will be an even less chance that you will test positive.

I have had Lyme arthritis attack not only my knees, hips, shoulders & spine, but all the small joints as well - hands, fingers, feet, toes.

If you have chronic Lyme and/or co-infections, very few people show much if any improvements in just two months of abx. You should have given it longer.

Can you get back in to see your LLMD and get back in treatments? Did you ask them about treating for HHV6? Many here are on antivirals as well as abx.

The LLMD would treat me for HHV6 with natural supps, not antivirals ABX. There is some worry about liver problems doing viral and bacterial treatments at the same time. The ID Dr. treats Lyme IF you come back positive on his tests, but I did not. He is the only one who will treat with Valcyte. HHV6 reactivation with Mono type syndrome, I think is a fancy name for CFS/ME. The ID Dr. (Dr. Lerner), specializes in that so if he doesn't see lyme, it seems that he defaults to any high viral or bacterial titers that could account for your symptoms.

I think the statistics were from the mainstream % of the sensitivity of the ELISA and WB. Usually around 60-90 %, then quoting facts that if you had arthritis or cardio involvement (for known cases), the statistic percentage rose up to 100 percent that were detected on those tests.

I did have an IGG Bartonella test come back at 80, anything over 40 was positive, but arguably is it reactivated or just an old infection? I guessed since I came back positive through IGENEX with my bands, that at least one of my several ELISA's and WB at commercial labs would show something, but it has not.

Of course the only people interested in seeing me do steroids were the Neurologists since they are trying to rule out MS. It is a risk, but they tell me that one week wont be a big deal. I also read that if you have a leaky blood brain barrier, this may help close it down.

I hate to say it, but I was hoping U of M or the Cleveland Clinic could at least narrow down a diagnosis for me and then if its Lyme, I know to go elsewhere. All these Dr's got me so confused on IF I have Lyme at all. There has got to be a better test. I have an infectolab kit coming from Germany, but im willing to try anything at this point (biopsy, etc, etc).

Hi Joey!

Please consider that EBV (Epstein-Barr Virus - HHV4) can cause also similar symptoms! And cause fatigue as well:
http://simmaronresearch.com/2014/05/epstein-barr-virus-autoimmunity-hypothesis-fit-chronic-fatigue-syndrome/

However despite the fact that your lyme test came back negative you can be highly suspectible to lyme, or other coinfections!
As I remember we have similar headache like symptoms. For me what helped is to get mega dose of vitamin&supplements&immune strenghtens intravenously. This has really helped in brain fog/dizziness/headaches. Not erased, but lessened the severity. The whole truth is that the neurophatic symptoms encreased during the course, but descreased after it. I do not understand, why? My doc has no chance of due to the IV, but the relation was pretty clear to me.

Here is a good artice that could explain why one infected does not produce antibodies (and therefore has negative test):
http://www.whatayear.org/02_10.html

So, if you have arthritis like symptoms too, than it can be pretty much the case.