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Dr. Burrascano's most recent "Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @ http://www.ilads.org/burrascano_0905.html suggests that you discuss with your doctor continuing treatment until you are symptom free for 2 months.
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HI Peedie and Meg, thank you for the messages. I'm a bit lost on the board, so I thought I'd just respond here.
I got sick nearly 2 years ago. Flu-like illness. The 'flu' got better after a few weeks. Sort of. I started experiencing very bad pain in my thigh (and butt) muscles and was extraordinarily tired. This went on for some months. I thought i had mono or something.
Over the course of 2 years and many doctors, other symptoms crept in.
Dizziness, nausea. Sweating buckets sometimes. Getting overheated very easily. Feeling extreme 'malaise'--like poison was flooding my system. Very weak. Exhaustion. Losing weight. Too tired to eat, or nausea. Eventually, stomach bloating that was unreal. Eventually, racing heart, pounding. Drenching night sweats. Hands started shaking from weakness.
For the first year, had on and off lymph node swelling. Fought all of this as long as I could. Had what I would imagine are familiar experiences with doctors, etc. Was given many diagnoses, many were that it was in my head. Etc.
Eventually blacked out and collapsed one day. This was about a year ago. Symptoms got so bad I had to stop working--which is almost unthinkable. Merry go round of doctors. Most of my blood work is pretty good, except I have extraordinarily high inflammatory cytokine markers--but no sign(s) of any autoimmune disease.
I don't know if Lyme is the answer. Maybe it's an endocrine problem, or something else. I'm currently waiting for 5 weeks to see a UCLA endocrinologist. I was in extraordinarily good shape when this happened. Very active, very athletic. It's just about wrecked me completely. I've also spent nearly all of my life savings trying to keep myself going this year. Not for pity, but this has been a disaster.
My UCLA rhuem. is open-minded, but kind of threw his hands up when i asked if Lyme was a possibility. Even though Ive asked about it, it hasn't been tested--even with the 'regular' testing. I know a bit about Igenix testing and all of this--it's all kind of bewildering.
Does that help? I don't want to go on and on. I really appreciate those who responded to my inquiry.
-M
Posts: 322 | From Venice, CA | Registered: Sep 2008
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I should add that I AM on antibiotics now, and have been for 4 months. They did find a mycoplasma pneumonia infection, and I've been taking azithromycin for it.
I don't feel any different, though, to be honest.
(and I joined the Yahoo group)
thanks again.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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Michael - It sure sounds like Lyme to me. Go see a LLMD with your list of symptoms and get tested with Igenex Lab. You need to be able to "rule out" Lyme. If Lyme is left untreated - it will likely get worse and harder to treat. Your rhuematologist may be open minded - but he can't help you if you have Lyme. http://www.xpressnet.com/bhealthy/symptoms.html
Good Luck and get well soon, Peedie
Posts: 641 | From So. CA | Registered: May 2008
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Michael I live in Santa Monica. If you would like to talk pm me and maybe we could talk about your symptoms and what you are going through. There are a few of us that I talk to on a regular basis here in Los Angeles, and I can tell you what we have experienced etc.
Posts: 158 | From Santa Monica | Registered: May 2007
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Michael, I hope you're doing what jblral has suggested you do, to find a doctor. You definitely have Lyme and need to see an LLMD, which means Lyme-literate medical doctor, who's trained to recognize/test/treat Lyme and coinfections.
Also, when you mention night sweats and also swollen lymph nodes, I wonder if those can be signs of coinfections, namely babesia and bartonella, respectively. So you should be tested for all the co's too, including ehrlichia.
Posts: 13171 | From San Francisco | Registered: May 2006
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I have an appointment with an LLMD now. I don't know if I have lyme or not, but SOMETHING happened to me. I had so many doctors--some good ones too--say it was out of the question, even to test for, that I had dismissed it a long time ago.
However, reading up on it has both alarmed me and given me some comfort that I have something that can be treated. It alarms me because I've been so sick.
There are so many symptoms attributed to lyme, it almost seems impossible. However, in reading, one thing really jumped out at me. As I first got sick, I developed nodes of some sort in my earlobe. They get pretty painful and nasty at times. I've shown/told every doctor I've seen these things--I've taken azithromycin, put topical antibiotics on them--they never have gone away, in two years. Every doctor sort of dismissed this as not connected to the larger illness I have experienced.
In reading about lyme, I read about nodes that sound very much like these, and they are often considered a hallmark of a particular strain of lyme. So....maybe I am on to something.
My appointment is in a week and a half. This past year, I've waited many weeks to see specialists--and it drives me crazy. This isn't too long to wait, but I'm very anxious now to find out what an LLMD says.
Thanks again for writing.
-Michael
Posts: 322 | From Venice, CA | Registered: Sep 2008
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