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Need help please
Sep 30, 2010
Hello all. This is my first post to this forum. I have read numerous threads and have enjoyed the informed feedback. I really need some help...

Here is my scenario:

I have been seeing a pain management doctor for several years to help me with pain associated with a partial knee replacement (PKR) in 2005.

During my February 2010 visit, my pain doc prescribed numerous blood tests (to include Lyme Disease). I had a tick bite within the past 18 months but no redness or other signs of an infection.
These blood tests were done by my primary care physician (PCP) in early March 2010. I called several weeks later (mid March 2010) and my PCP advised all was normal on my blood work. OK, fine.

For whatever reason, the blood work never got to my pain doc. I finally got a full copy and hand-delivered it in early September 2010.

The "Lyme Disease Antibodies (IGG, IGM) Western" show the following: 41 KD IgG (Abnormal) - Reactive, 66 KD IGG (Abnormal) - Reactive, and 23 KD IgM (Abnormal) - Reactive.

And of course, it says ABNORMAL in bold at the top of the results page.

So, with the above information, my pain doc makes a decision based on the results as well as my symptoms (chronic pain, headaches, blurred vision, fatigue, slight drooling from the left side of my mouth, etc) that I have Lyme Disease. I am OK with his decision as it seems consistent with the voluminous amounts of information I found on the Internet (and this board).

My pain doc prescribed Cipro for 30 days as well as a shot in my butt cheek (hurt like hell). I took about 20 days worth of the Cipro when other doctors (friends, etc) all agreed I should seek out a professional in this field because they felt Cipro was not the appropriate drug to combat this disease. OK, will do.

Long story short...we got in touch with the Infectious Disease doctor (highly recommended) who advised going to the ER immediately and getting blood work, a spinal tap, and a CT scan. I did all this last night as I have been feeling much worse. The CT scan came out fine as did the spinal tap and preliminary blood work. I also got an IV antibiotic (Rocephin).

The ER doc and the Infectious Disease doc communicated last night and they prescribed a PICC line which was installed this morning.

I met with the Infectious Disease doctor after the PICC line ordeal, and he reviewed my past result of the Western Blot Test and basically said I was negative for Lyme because I did not meet the "5 and 2" (5 positive IGG and 2 positive IGM) criteria for a positive diagnosis. As previously stated my results were 2 and 1.

He also added that I probably should not have had the PICC line put in because of the lack of diagnosis. He felt like since it was installed he was going to have IV antibiotics done however. More in-depth blood work was ordered today by the Infectious Disease doc to include antibodies? testing.

Where in the heck do I stand with this? I am so confused and frustrated!
[QUOTE=flutter11;4590487]Hi Spideria,

How long have you been having these symptoms? Your story sounds very simliar to mine and I'm just as frustrated as you sound. I have had various neurological symptoms that began on the right side of my body, including drooping on the eyes and mouth. This actually led to me being very sick, put into emergency with facial paralysis, and I too had a Spinal tap and multiple MRI scans. So I know what you are going through.

Just wondering if you had your Lyme test through Igenix Labs? My lime test was a Positive by Igenix standards, but negative by CDC. So if a regular doctor would have ordered it, it would have been seen as a negative - when it's actually considered a positive when associated with the correct symptoms.

I'm still in the boat where I don't know what to think, I also have major hormonal issues that seemed to begin at the same time I was having neurological issues. It's tough that there's not a conclusive test that can be done.

So how long have you had these symptoms? Are you seeing an LLMD because I think that's the only way to really get a conclusive diagnosis?
You can email if you want.


Sorry for the delay in responding. I am not sure about the test other than it was the Western Blot Test. I just finished 30 days of IV Antibiotics and had the PICC line removed today. My doctor now has me on 2 weeks of oral antibiotics. He is very pleased with the outcome after the 30 days of antibiotics (as I am). I honestly feel terrific. I can tell a huge difference from several months ago. My joint pain and headaches are gone and my vision issues have also cleared up for the most part. My left eye and vision still feel a little weird though.

Regarding the symptoms, I started feeling bad in February 2010. It seemed to progress until my wife took control and sought help for me (other than the general doctors I was seeing). I hit bottom in August/ September and luckily found the infectious disease doctor who treated me properly.

On another note, the ID Doc told me today that I am very lucky. Apparently many people don't respond as well as I did to the treatments.

Good luck~

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