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IV Rocephin and MAYBE first herx. Could this be confirmation?

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Posted 4/5/2015 10:39 PM (GMT 0)
Ok, 18 Doctors later, not including 7 ER trips, three lumbar punctures, 4 MRI's, visits to the University of Michigan. Mayo clinic, etc. etc, Im wondering if this is a good sign. I have had many Lyme tests from many labs all negative, one of which was a Western Blot through Quest the same week as my first IGENEX positive. ALL Quest WB bands were negative, compared to my very positive IGENEX. Of course only the LLMD's believe in the IGENEX. I went with that and took 6 weeks of Doxy and overlapped with Zith many months ago and felt no herx and just got slowly worse.

I did the switch to IV antivirals (Cidofovir) for possible HHV6 reactivation through another Dr. and felt sick off and on for 3.5 months for Chronic fatigue but didn't get better. I did another IGENEX 6 months after the first and now have some IGG bands. Recent other labs still negative. That CFS Dr. now suspects lyme and I went with a PICC line and Rocephin this week, not expecting anything. Four days in I feel like a have the flu and have aches, and slight burning skin. Some of these are old or current symptoms, just worse. Im really wondering now if this is a herx and im on the right track??? Could I herx from something else other then Lyme with this IV? I ask because I have a appt at Cleveland Clinic in a few weeks about some neuropathy and autonomic dysfuction (that the source hasn't been identified). What patterns should I look for to confirm herxing? This Dr. wants 6 weeks of IV and three months of Orals after..Thanks
Posted 4/6/2015 4:05 AM (GMT 0)
The flu-like feeling and increase of symptoms sounds like a herx, IMHO. Some people need the full court press of the IV treatment to get the ball rolling in their treatment. It looks like you are on the right track.

With this aggressive treatment and the fact that you have neurological involvement could mean your herx lasts quite a while. With a less aggressive approach, the body has time to adjust and recover and you see a period of improvement of symptoms until the next increase of medicine. Herxes are pretty much different for everyone, and, in my experience vary depending on what medication you are on.

Your neuropathy and autonomic dysfunction could easily be caused by Lyme and or co-infections. As I understand it, you are not see a Lyme Literate Doctor, right? An LLMD will treat you beyond the resolution of your symptoms.
Posted 4/6/2015 3:12 PM (GMT 0)
"Could I herx from something else other then Lyme with this IV?"

I don't think so. Are you seeing an LLMD? You need to.
Posted 4/6/2015 11:23 PM (GMT 0)
Im kind of seeing a few of them. One is monitoring since he doesn't do IV's and the one doing the IV is a infectious disease Dr. affiliated with a major hospital. He is more of a cdc type Dr. in my opinion. If I even have a glint of hope at the 6 week mark that IV's is the right thing and its lyme, I will be scrambling to find someone who will prescribe it longer as orals did nothing last year. I do have the MTHFR gene and I was told my TGF-b1 and C4a levels are very high. I wasn't given a good explanation on that other than a possible detox block or biotoxin buildup issue. I have some HLA DRB test results from Quest labs but the Dr. I asked to order them doesn't know how to explain them to me, thus I have to search the internet I guess.
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