Introduction - the October effect

[Not dead yet!]

PS: I didn't realize when I chose the name that it refers to a disability campaign. I was referring to the Monty Python skit.

Hi I'm new here and I don't go on forums much, but I do read things and whenever I see some nebulous illness or other, I always think "ok, but what do people REALLY do for it?" I'm a born contrarian, which is both good and bad. Example: I use Potassium Sorbate as a douche for a vaginal yeast infection. Hey it works. I probably got it from some sisters blog or other.

Lately my problems have been much more serious than yeast infections. I was always easy to stress out, but that was because I was one of those obsessed people who can't just get a job and go home at 4:30 and forget it until the next day. I didn't realize the predictable crash in energy levels was part of a pattern until much later.

The crashing I was always trying to elude kept getting worse until I had some diagnoses typical of CFS/ME and FM.. chronic pain, migraines, PCOS, photophobia occipetal neuralgia, blood clots. I had an excellent career in IT where I felt useful and had a knack for solving problems in a new way. IT welcomes contrarians (unless you work someplace where they have "change control").

To make a long story short, I'm still trying to guess what the trigger was, but it might be that my system was never strong since I have a long history of serious illness since I was 4 years old.

Last year I told my new doctor about the "October effect" which is that my issues always get much worse in October or thereabout. This past year it was horrible. It started with a yeast infection, then several courses of antibiotics for a choking cough that looked microbial, then I broke out in some mouth spots that I know come from a herpes virus, so I was on Acyclovir for a while (they gave me that but it doesn't work well). Eventually a fluoroquinolone beat it into submission.

Subsequently I was tested for some types of Herpes viruses. I have both EBV and CMV and my Igg is high out of range on both. So we assumed I had chronic mono, which quickly led me to CFS and then ME/CFS publications. My sympathetic doctor has me on a 3 month regimen of Valcyclovir which helps a bit, and is obviously justified in my case. My insurance though, disagrees so I pay out of pocket for a local pharmacy to order it for me at around $55/mo.

I don't have an official diagnosis, nor do I think is there a gold standard of diagnosis (is there?). But the clues are there. I can't drink alcohol without getting very sick, I get better with saline IV drip (but I don't have orthostatic issues, it helps with pain), I get wiped out for weeks after cardio exercise. Etc.

Many things were made clearer to me when I read "Plague" by Mikovitz and Heckenlively. Even though I didn't recognize this issue until recently, I was impressed by Judy Mikovitz when I first saw her in WIRED magazine under the title "The virus hunter." I think she is right and we're just looking at a hissy fit by the med establishment. I was genuinely interested in her plight and read all I could about it just as a story about science. I never dreamed I'd be in this situation myself.

So here I am. And very thankful that research continues.

 

[Remy]

Hi I'm new here and I don't go on forums much, but I do read things and whenever I see some nebulous illness or other, I always think "ok, but what do people REALLY do for it?" I'm a born contrarian, which is both good and bad. Example: I use Potassium Sorbate as a douche for a vaginal yeast infection. Hey it works. I probably got it from some sisters blog or other.

Lately my problems have been much more serious than yeast infections. I was always easy to stress out, but that was because I was one of those obsessed people who can't just get a job and go home at 4:30 and forget it until the next day. I didn't realize the predictable crash in energy levels was part of a pattern until much later.

The crashing I was always trying to elude kept getting worse until I had some diagnoses typical of CFS/ME and FM.. chronic pain, migraines, PCOS, photophobia occipetal neuralgia, blood clots. I had an excellent career in IT where I felt useful and had a knack for solving problems in a new way. IT welcomes contrarians (unless you work someplace where they have "change control").

To make a long story short, I'm still trying to guess what the trigger was, but it might be that my system was never strong since I have a long history of serious illness since I was 4 years old.

Last year I told my new doctor about the "October effect" which is that my issues always get much worse in October or thereabout. This past year it was horrible. It started with a yeast infection, then several courses of antibiotics for a choking cough that looked microbial, then I broke out in some mouth spots that I know come from a herpes virus, so I was on Acyclovir for a while (they gave me that but it doesn't work well). Eventually a fluoroquinolone beat it into submission.

Subsequently I was tested for some types of Herpes viruses. I have both EBV and CMV and my Igg is high out of range on both. So we assumed I had chronic mono, which quickly led me to CFS and then ME/CFS publications. My sympathetic doctor has me on a 3 month regimen of Valcyclovir which helps a bit, and is obviously justified in my case. My insurance though, disagrees so I pay out of pocket for a local pharmacy to order it for me at around $55/mo.

I don't have an official diagnosis, nor do I think is there a gold standard of diagnosis (is there?). But the clues are there. I can't drink alcohol without getting very sick, I get better with saline IV drip (but I don't have orthostatic issues, it helps with pain), I get wiped out for weeks after cardio exercise. Etc.

Many things were made clearer to me when I read "Plague" by Mikovitz and Heckenlively. Even though I didn't recognize this issue until recently, I was impressed by Judy Mikovitz when I first saw her in WIRED magazine under the title "The virus hunter." I think she is right and we're just looking at a hissy fit by the med establishment. I was genuinely interested in her plight and read all I could about it just as a story about science. I never dreamed I'd be in this situation myself.

So here I am. And very thankful that research continues.

Welcome! Thank you for introducing yourself. I'm sorry you find yourself in this situation too but I hope you can find some helpful resources and people here!

 

[Not dead yet!]

Welcome! Thank you for introducing yourself. I'm sorry you find yourself in this situation too but I hope you can find some helpful resources and people here!

Thank you, I have a lot to learn and I'm sorry anyone has to go through this, especially without treatment or answers. I honestly can't think of a better way to torture me than to take away my work and ability to exercise. It's unbelievable to me that some people actually think people would fake it.