After suffering with strange symptoms for almost 2 years now, I thought I finally had an answer. My new nurse practitioner gave me the western blot, and 2 of the 5 markers came back positive. Not that I was happy with what she thought was a positive result, but it was an answer. She put me on doxy for 28 days.

She also sent me to an Infectious disease doctor who considered my results to be a false postive. I am still on the doxy, and it has been 2 weeks. My symptoms have gotten worse, and now I have this random on and off rash on my hands chest and stomach. I have heard about the reaction you can get while taking the antibiotic, because the lyme is fighting back. I am going to a neurologist for more testing on 3/25, but in the meantime, I am almost convinced this is Lyme, and the infectious disease guy is wrong.

Does anyone have any advice for me? If it is lyme, are my symptoms going to go away once the doxy runs out? Any other ideas of what it could be? My symptoms strongly resemble those of lyme. I have been to a neurologist who sai I had an inner ear issue. I have had an MRI which ruled out MS. I just want to know so I don't get any worse beacuse I am not dealing with the right problem.

Please help.

Jen

Check out this site:

www.chroniclymedisease.com

There is a book that I really learned a lot from on that site called "The Top 10 Lyme Disease Treatments". It will explain Chronic Lyme better than any info you will find on the internet. AND - it will explain why many people don't get well from the disease just by conventional meds. I really believe you have to take a holistic approach to this disease. You can do the antibiotics - but you also have to do other things. Exercise, supplements, etc.

If you go to these other specialists, they are most likely going to tell you that you don't have Lyme - that's it's probably fibromyalgia or rh. arthritis. You'll end up on meds that will make you worse. Make sure you don't take any penicillin or steroids!

There is a gal on here named 'Lymie' who has taken the holistic approach to this disease and she's 95% symptom free so don't hesitate asking her any questions. I'm going to her doctor next month for a 2 week treatment.

Let me know if I can help you with anything... my best advice is to research the crap out of this disease and be smarter than your doctors!!!

Thanks for posting.

You have done the right thing by joining this group. I wish I knew something existed like this five years ago when I was diagnosed with FM. I knew NOTHING about lyme disease until about a year ago. I even forgot that I had a tick attached and engorged in 1991 or 1992. (My symptoms got off to a slow start, but after the second bite in 1997 the symptoms progressed more rapidly every year. ) My doctors (an internist and a rheumatologist) poo-pooed my symptoms and prescribed "band-aids" for my increasingly bothersome symptoms. It got so bad last year, I begged them to look for something else that might be wrong with me. I asked how can fibromyalgia hurt so much??? Guess what? My rheumie told me I needed to see a psychiatrist! Imagine if I listened to that doctor? I'd be dead in five years or less if I believed them.

I found a biological MD in Atlanta, GA. He correctly diagnosed my conditions, treated me and I'm 100% better. That last 5% was taken care of last month and had everything to do with hormones. (I'm approaching 42 and don't if my hormones are out of whack because of that or because of lYme....that's a good question, but I'm guessing it's because I'm not a spring chicken anymore. (Although I'm feeling kinda spring chickeny again, instead of like an old woman)

It not only sounds like you have lyme, but you may also have some coinfections. The sweats is a tip-off for coinfections. Do you also get chills? I used to get malaria like chills at night with uncontrollable, paralyzing shaking and impossible to get warm enough.

When I look back, I was so miserable.

What about migraines? The traveling pain is another big tip-off for Lyme. The arthritis of lyme is different than osteo because it's not symmetrical.

My doc uses several labs. Have ya'll ever heard of Immunosciences Lab, Inc. This was one that was able to detect the lyme and the coinfections and those lovely HHV-6 and HHV-7 viruses. I don't believe this lab is swayed by politics unlike some other labs in this country. There was one lab getting too many positive lyme tests. They changed their testing. Now, they process more tests that are negative. Hmmmmm.....

Anyway, in a nutshell. You can get well again. I was lucky and was led to a clinic in Georgia. I didn't find out about my lyme disease from my conventional doctors (Thank God). Therefore, I do not know what it's like to be healed the conventional way (with antibiotics). We used homeopathics, herbals, and nutritional supplements to bring me back to life. Jaime is certainly right about the cat's claw. I used Samento by Nutramedix throughout most of my recovery to kill the invaders(Borrelia, ehrlichia, bartonella and babesia). The "reported" percent of "lymies" with coinfections is only 3-6%. However, I believe it to be much higher than that in real life.

I would definitely get a book about this disease. My favorite book was Healing Lyme by Stephen Buhner. It also explained diagnosing this disease, the symptoms, etc. Another book that I found helpful was Everything You Need to Know About Lyme Disease and Other tick-born disorders b K. Vanderhoof-Forschner. Geez, that's a long title. The only thing I didn't like about Karen's book was she didn't delve into alternative treatments. That's sad. Alternative medicine worked for me and I was getting close to the bottom of the barrel.

Stay in touch and let us know what you need.

Lymie

Post edited by: lymie, at: 02/21/2008 09:15

I just sent you a pm about the dr. in Longmeadow who specializes in lyme disease.

After seeing hundreds of drs. she is the only one who has offered me help and hope. She combines conventional methods with alternative(reiki) and herbal remedies.

Let me know if you need any other info.

Take Care!

AMY

Take care of yourselves and I will post back if I have any more questions and with any new to report. Sending you all a giant hug for being here and replying to my post.

Jen

looks like you are definitely lyme support helps.

that's why i knew you could find me help.

I knew you were the research type too.