August, September and October update

August, Sept and Oct update:

As noted in my previous blog, July was really a bad month for me. What surfaced in the lab tests was a HSVi 1 IgM "detected." So we are somewhat suspicious that the falling apart in July could have been HSV 1 related. It was not VZV, CMV or EBVi (possible cross reactions to HSV 1). It was also not HHV-6, Coxsackie B3 or B4 or Cpni. The IgM was "detected" a second time at this same lab so we know it was not an error. 

My antibody titers to Cpn IgAi have dropped significantly from >1:256 to 1:32. So the rifampin and doxyi are doing their job.  I am staying on those antibioticsi for now.  Dr. S suggested that I not add in flagyli or anything else at this time.

August was a recovery month from my July meltdown. September was my best month ever in the 8 years of my illness. I had 18 days that were a "6" and one day that was a "7" (10 is normal). During September I had 3 back to back trips that I weathered fine. 

October, unfortunately, has not been as good as September. The doctor is trying valtrex instead of acyclovir to see if we can better control the HSV 1. I had a headached when I started the valtrex, but otherwise I'm doing OK on it.

My best to all,
Timaca

Comments

HSV & more

Timaca,

Like you I have had to keep an eye on opportunistic herpes viruses (BTW I hate that viruses that cause a host of problems are often referred to generically as herpes) over the years. I would almost always see reactivation of cold sores (HSVi-1) whenever i was very aggressive with my therapy. Dr Stratton and I have discussed this quite a bit and our best guess is that when you cause Cpni to die in disparate parts of your body, WBCs are recruited to those areas and leave areas in which they are keeping a virsus such as HPV-1 under control. Anyway the best option which apparently you are aware of is to try and keep these opportunistic infectionsi under control. it is FAR easier to contain these infections upfront that to deal wirth them later. I have not bothered to change from acyclovir to valtrex as the cost/benefit ratio did not seem like a great deal to me. But I do think it is a good idea to be agressive in dealing woth these and other opportunistic infections.

- Paul

Hi MSi Mom and Paul~I enjoyed

Hi MSi Mom and Paul~

I enjoyed your responses.  Paul, interesting theory that you have about HSVi 1 outbreak being related to WBC being recruited to other areas.  Perhaps that is the case.  Yesterday I spent quite a bit of time looking over my calendar for the last 12 months.  It seemed obvious to me that some of my "meltdowns" appeared to be specificially HSV 1 related, as the cold sores happened fairly early in the meltdown.  At other times, (like when I started antibioticsi and had a herx reaction) the HSV 1 sore would appear at the end of the herx reaction.  In that case I'm guessing that the stress of the herx reaction was enough to decrease my immunity and the virus is able to come out.   Or your theory could apply to that scenario too.

We had tried earlier to increase the acyclovir from 800 mg to 1600 mg daily but that had a significant adverse effect on my emotional being (I was sobbing out loud and wanting to stab myself with knives---very unlike me---I'm a very emotionally stable person).   So, the choice was to either increase the acyclovir slowly or switch to valtrex.   We opted to try the valtrex route.

I must say that I spoke too early yesterday in my post about tolerating the valtrex well.  Last night was a horrible night for me....very flu like and in much muscle pain. Today I'm hurting all over.  It is likely a herx to the valtrex, although there is some chance that I'm not on enough antiviral and the virus is having a heyday.   Either way, this is NOT fun.

Best, Timaca

on valtrex 500 mg tid

http://whispersfromthefather.me/

 

 

 

Bssically good news

Glad to hear from you, Timaca. I follow your updates closely; not only are your symptoms tricky and interesting, so are the solutions to them.   Much of Erica's disease and abxi experiences are similar to yours. You are a few years ahead of her, but i feel like we follow in your footsteps many times.

I wish you WELL!

MSmom