Co-infections with Herpes and Lyme

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That's a pretty grim title, isn't it? An ex-husband probably will write me and suggest it's TMI (too much information). And he would be right, but I long ago made a decision to write as I need to and not be bound by his limitations. In case he's forgotten, we're exes.

Did you know that 11% of men and 23% of women in the US have HSV (average 23%)? Neither did I. However, it's estimated that only 2% know that they have it. That's scary! It could be worse. Check Wikipedia to see figures throughout the world.

I was prescribe gancyclovir several months ago, When I finally learned the manufacturer of it, I called the pharmaceutical company to get the straight scoop on why gancyclovir (Cytovene) for my HHV-6 can no longer be obtained. Over the past 4 months, I don't know how many pharmacies I've called trying to find it only to be told that they couldn't get it anymore. "It's on backorder and has been for awhile. We don't know why." At the beginning of my search, when Medco told me they didn't have it, they made the unprecedented offer to cover whatever costs I might incur when I did find it.

The phone answerer said it has too be sent through the FDA for re-approval. She wouldn't or couldn't provide a reason for that. So now I know that the favorite medication for my HHV-6 won't be available and I need to find another anti-viral.

My appointment with my favorite Internal Medicine guy (he with the giant hands) on Monday was great as usual. I read on other blogs that they don't get much "face time" with their doctors and I've been in that unhappy situation many times in the past with many doctors. Dr. D. and I only probably spent 10 minutes together, but we exchanged a lot of information. It's almost as thought we're speaking in short-hand.

I can only liken our meetings as though I was presenting information on a patient to his doctor during Grand Rounds in the morning; something we both have experience doing. He asks the appropriate questions, I provide him with my answers, and I tell him of my needs. This why I always recommend that patients compile a list of symptoms, questions, and any other information they want to provide for the doctor. This is especially important if one's time with the doctor is short and if one has brainfog.

Last month he had ordered the full set of Herpes panel which was drawn within the office. I had a bad feeling when the Medical Assistant couldn't figure out what tubes needed to be utilized, but calmed myself when she simply didn't know that HHV-6 was in the Herpes group. Easy to understand. However she only drew 2 tubes, one for the normal chemical tests and another for Epstein-Barr (EBV), Herpes Simplez (HSV), and HHV-6. The last time I had those same bloods drawn, I remember Quest Lab had drawn 6 tubes.

I knew that I would have positive results for all three Herpes (Herpes never die, they're simply controlled) so I was disappointed when the office didn't call me after a couple of weeks with the results. I did call them asking for the results but they didn't call back. (Don't doctors' offices do that anymore?)

My misgivings about the blood drawer were justified: instead of the HSV IGg and IgM, she only ordered the IgG. That's not too bad. The IgM tests is useful only when the infection is in the the acute stage (brand-new) while the IgG is used when the infection is in the convalescent (chronic) stage. Since I've had the systemic infection since 1982, we didn't need the IgM results.

However, she ordered the IgG for Epstein-Barr (EBV). In it, it was negative. I had to look up this one. Turns out it's only positive in the acute stage and lowers greatly after 3-4 weeks.

But she missed the HHV-6 entirely.

Other than the usual blood tests (which were all normal), I went through being stuck twice (my veins collapsed) just to find out how high my Herpes Simplex was when the real goal was to assess my HHV-6 levels. (HSV normal is, of course, zero and my IgG is 19.2. No question about that!

I also made sure he knew just how fatigued I've been. He's going to chat with a Home Heakth company to see if they can help me with shopping, food preparation, and light housekeeping. It would even be great if someone would cook a hot meal daily, too. I think it's the shopping in a grocery store that almost brings me to my knees (literally). I go for groceries about once a week and I'm knocked back for several days, making it difficult to cook daily. And housework? I feel lucky if I can keep the kitchen surfaces clean and the garbage taken out. This is why I wanted to know my full viral load.

I have an appointment in two weeks for another blood draw and perhaps an answer from a Home Health company. We'll also assess how acyclovir 2 Grams a day is working. (Normal dose for chronic infection is 800mg daily, so I'm taking about three times normal. I''ve never been on such a high dose, do I'm hoping.)

I started the Zovirax (acyclovir's brand name) two days ago. Yesterday I was so sick, I couldn't walk the dogs. In fact, just walking from my chair in the living room six feet to the kitchen was almost too much. It is unusual for me to give in and lay down, but yesterday I took a nap and slept well. My Morphine Sulfate IR didn't help in any way, but the Lyrica I took in the evening did. I also gave in and went to bed early, I was again grateful for my sleep number bed and slept well. Today, I am back to my normal, so the Herheimer-Jarisch (Herx, for short) reaction was short-lived.

Please get tested for all co-infections and get them treated.

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