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Could it be a parasite, active virus, mold, other bacterial infection, or something like connective tissue disorder, sarcoidosis?

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Yep. Most here have co-infections, and often more than one to go along with the Lyme. It complicates the issue, and makes your symptoms that much worse.

You've come to a very good place, and I hope you stick around and learn as much as you can about your "disease complex". I've only been here a few months, but am sure I have had Lyme symptoms for 20 years.

I know treatment takes time but I do hope you get some measure of relief sooner rather than later.

Tracy

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Tracy
.... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�.

Posts: 2966 | From Colorado | Registered: Dec 2005  |  IP: Logged | 

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Originally posted by madhattan:
Hi all. I am new to this forum, but I thought that I would share what I wrote on another website to introduce myself:

Hi to all my fellow Lyme survivors!

I'm a 29 year old male who lives in New York City. The last 110+ days have been extremely hellish.

After going to numerous doctors and tests (MRI, EMG, bloodwork, etc.), I'm finally being treated for Lyme disease by an intelligent LLMD in Connecticut. Like many of you, I didn't even care that I had a nasty disease...the nonstop pain was sooooo bad that I just wanted to get on antibiotics immediately!

Anyway, my first test (ELISA?) came back negative, and I haven't seen the results from Igenex yet, but I'm being given antibiotics based on a clinical diagnosis and muscle kinesiology (that I apparently failed).

I have had some odd symptoms over the last decade like eczema, swollen lymph nodes, sleep paralysis, rashes, prostatitis, adult acne, eye infection, sinus infection, racing heartbeat, anxiety, cold feet, etc.

Fun, eh?! However, believe it or not, none of these things were terribly alarming to me and they were all treated individually.

This April, after finally being treated for my nonbacterial prostatitis with Aleve, I started to develop constant muscle twitching in my calves. This quickly spread to every single muscle in my body.

I also had some heart palpitations and liver area pain. Then it went downhill very quickly.

I started getting burning muscle pains and sharp, stabbing pains everywhere...and I do mean everywhere -- scalp, tongue, eyes, nose, fingers, toes, torso, there was no place I didn't feel pain.

I also started getting abnormal sensations like water dripping down my leg, very painful electric shock sensations, hot wax/internal bleeding sensations, bugs crawling on torso and arms (which I've actually had since 2000).

If that weren't enough, I also started to have involuntary jerking of fingers, toes, even entire limbs and then my knuckle joints got stiff.

Oh, and I forgot to mention that I had a strange headache in January, located in the back of my head that lasted for 4 days. I remember thinking it was strange, because I very rarely get headaches, it lasted for so long, and due to its location.

Then, starting in February, I noticed that little scratches and bruises would leave scars, that normally would heal in a day or two.

The neurologists said everything from anxiety to post-viral syndrome to a simple case of fleeting neuralgia .

I tried every painkiller, and nothing worked. I saw many similar posts on other website's forums where doctors quickly dismissed their patients.

I knew that something was definitely not right...the pain seemed so urgent, decisive, deliberate...like an active infection was taking place...not something "post" -viral.

Plus, I was getting worse...not stabilizing and certainly not getting better.

Not only was I taking an NSAID (which can cause worrisome changes in the body), but I was also changing my sleeping schedule around (and, therefore, not getting very much sleep).

I was also eating a lot of sugar. All of these things probably suppressed my immune system, allowing the Bb and company to take control.

However, I must admit that I'm still not 100% sure this is what I have.

Could it be a parasite, active virus, mold, other bacterial infection, or something like connective tissue disorder, sarcoidosis ?

For now, I'm just trying to concentrate on letting the drugs do their thing and hoping for the best.

I've only had these extremely severe symptoms for about 110 days, but it has felt like a lifetime.

My doctor thinks that I may have gotten Lyme (he believes I am also co-infected) in the mid-90s while in college in the Hudson Valley .

I am currently on:

300mg minocycline,
800mg cedax,
and 400mg plaquenil daily.

He also wants me to take:
CoQ 10,
fatty acids,
magnesium taurate, an A.I. formula,
glucosamine msm, and
acetyl-l-carnitine.

I've read conflicting info regarding glucosamine and magnesium.

Anyway...I've been on mino for only 17 days,
cedax for 13 days,
and plaquenil for 9 days.

My doctor wants to see me again in 6 weeks to see if I need to go on I.V. antibiotics, but even though I may have had this for a decade or more, he seemed quite optimistic regarding my neuralgia symptoms going away in the near future.

I haven't herxed at all (I hope this isn't a bad sign...I read that SOME people don't herx and gradually get better).

Believe it or not, I started to feel very slightly better last week (already!), but today (and last 7 days) I felt like I did before I started taking antibiotics.

I guess I don't really have a specific question, but I just wanted to introduce myself to the group and get any suggestions/advice, concerns, or comments about my situation.

I always considered myself to be very good at dealing with pain. I remember after running my first marathon that people were asking me how the pain was.

That pain was NOTHING, a piece of cake compared to the nonstop, many different types of pain, creepy abnormal sensations, no sleep for many nights in a row, etc. that I have just endured (and continue to endure).
For those of you who have pushed forward and survived the same kind of thing that I am dealing with, I bow to you.

Thanks for reading. Lyme camaraderie...gotta love it. ;P Best,
madhattan

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