Saturday, June 26, 2010

Results of new Herpes Tests

An antibody molecule (PDB entry 1igt) (more de...Image via Wikipedia
Today saw my giant Dr. D. to learn how high the IgG levels of my Epstein-Barr (EBV) are along with the status of my HHV-6 and Herpes Simplex (HSV).

Looking back, it's been since September that I've been trying to find out this numbers.

First a basic: Do we all understand that like the Lyme or syphilis spirochete, the various Herpes infections can't be eradicated either? Their titers (levels n the blood) can be lowered so that the symptoms are manageable, but they're always percolating in the undergrowth, just waiting for the right impetus to relapse.

That impetus could be any another infection, a surgery, a car accident (all of which qualify as "trauma"), undue stress, poor diet or hydration, etc. Anything that lessens the immune system's ability to function could cause a relapse.

As an example, I was never more ill than after having been the sole caregiver for my Mom and then for my Uncle. I was somewhat relieved for us both after my Mom died in '96 and I've been trying to get back on track since my Uncle went into a Nursing Home in 2002.

I've always cautioned folks to ditch their doctors who don't do what they want but rather than ditch this gentle giant to locate yet another doctor, I've decided to stick it out a bit longer and try to educate him further in his Lyme disease "courses." He shows great promise. We'll see.

Anyway, I reported that the heavy doses of acyclovir (begun in early March) for my Herpes Simplex (HSV) and for my high Epstein-Barr (EBV) titers have been working wonders in that initially, my dead-sore thighs (I don't have any other way of describing that unbearable aching) and my fatigue were dramaticcally lifted. However, it wasn't too long (about two-three weeks) when those improvements eased off.

One could suspect that I had succumbed to a Placebo Effect but I think that's doubtful since I had absolutely no expectations that the acyclovir was going to be helpful. By definition, a Placebo Effect only occurs when the patient believes the medication or treatment is going to work.

(I will set up a new Page with the explanations of the Placebo Effect since it requires some understanding to help us evaluate whether we are experiencing real recovery or the Placebo Effect in ourselves.)

Anyway, about Week Two of the acyclovir, I started noticing a yellowish tinge to my skin and got rather concerned. After all these years of medications, this would not be a good time to suffer liver problems.

I made a "slight" change in how I took the doses daily. Over the years, (unless they were narcotics) when drugs were prescribed two-four times a day, I generally lumped them altogether. With 400mg of acyclovir at fives times a day, it was too much to figure dosage times so I just took them altogether. Not a bright idea with such a large dosage and definitely not recommended! So I swallowed my ego and spread the dosage out during my waking hours as the doctor had intended. It wasn't so hard after all. And my yellowish tinge resolved.

Which brings us to another little problem  in our protocols. Doctors who prescribed more than one drug will normally tell us to avoid taking them together everyday. Their understandable rationale is to minimize the stress on our livers and/or kidneys.

Great plan for most meds but since I'm of the notion that if one is trying to kill spirochetes or other bacteria of an infectious nature, taking them regularly minimizes the bugs ability to mutate. And conversely, "pulsing" an antibiotic easily helps the bugs to mutate. (Just one retired RN's opinion.)

Therefore, I'm sticking to my twice a day Biaxin until I feel better, than I switch off to the acyclovir for a week, then back to the Biaxin. Tonight, I restarted the acyclovir since I'm suffering again.

Back to the tests which were taken while on my Biaxin, but not the acyclovir (and lets us not forget the pain and sleep meds).

My HSV remains significantly too high for someone with a chronic relapsing infection, as is my EBV. So we'll continue the med for another two months at least with new labs being drawn mid-July.

The only good news is that my HHV-6 has now been tamped down to non-relapsing levels. First time since around 2002. The question is whether the previous runs of gancyclovir which ended around 2006 was the reason for this or did this run of acyclovir hit it, too? (Supposedly, acyclovir isn't particularly effective for HHV-6.) We'll never know so I'll let that go.


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Tampa, FL, United States
I thought that my "troubles" began in 1989 when I was rear-ended by a druggie going 60 miles an hour while I was stopped at a city red light. Two years later, Fibromyalgia was diagnosed. Since I had all the symptoms, it seemed like a valid diagnosis and I was grateful to finally be diagnosed with something! Subsequently, I spent many years immobilized with widespread pain secondary to only being treated with a series of SSRI's. In 1994 I had to retire early and lost my new husband who, like my former employer, just couldn't understand my sudden change in behavior and decrease in mental faculties. To be somewhat fair, those were the "Dark Ages" in Fibromyalgia treatment. I didn't know until 2001 that my "troubles" had started on a beautiful day in 1985 when walking on the Mohawk Trail in NY I was bitten by a microscopic tick and developed Lyme Disease that was misdiagnosed as psychiatric problems, FM then CFS for the next 15 years. If my story sounds like yours, please, PLEASE get tested for Lyme by a reputable laboratory and interpreted by what we call a LLMD (Lyme-literate MD).Both the lab and the MD are equally important to your quality of life.