Friday, December 5, 2008

Bleeping Lyme Disease Part 2

weekly hits
DuraSoft 3 Litetint

I finally went in to see my doctor yesterday. As expected she repeated all my lab work, lyme testing, erlichiosis, western blot and elisa testing. I had a low grade temp yesterday that I was not aware of and have it again today.She gave me something for the muscle spasms that really doesn't help but did give me about 4 hours sleep. I also have to be seen at the Lyme clinic for further evaluation. I just put a call into her office to get the lab results which probably won't be in today but I want to restart the doxycycline since this is how it started last time. Low grade temp, aches and pains, difficulty concentrating, mental fogginess, irritable, headaches etc.
I've been doing a lot of research on Lymes lately. Please remember that the following is not medical advice but after reading countless medical studies I am convinced of a few things. These are the things that made sense to may or may not be true depending on your current thinking.
The last update I see on Lyme Disease treatment from the CDC (center for disease control) is in 1994. They recommend that a Western Blot test/Elisa test only be done after a positive lyme serology should symptoms reoccur. Sadly, patients can still be lyme positive and have a negative serology test. And the western blot also misses more that 50% of positive cases. Since serology only measures the antibody response, not the antibody itself many patients with late stage seronegative lyme may still have the disease and go undetected for years.
It was also found that the Borelliosis bug that causes lyme can lodge intracellulary, morph and change and alter a persons own DNA. Kind of like a cloaking device on a submarine. Borelliosis, as it enters and exits the B lymphocytes, it draws the outer surface membrane of the lymphocyte with it. Bb can then modify its shape and forms an antibiotically protected cyst. These cysts can lay dormant for many months or years until activated by a virus or illness or whatever.
Late stage seronegative Lymes has been implicated in many autoimmune disorders such as ALS, MS, Fibromylagia, Chronic Fatigue syndrome, Alzheimers as well as heart and psychiatric disorders.
A recent Canadian Lyme Disease conference presented the case studies of CSF(cerebral spinal fluid) confirmed LD patients with CNS(central nervous system) symptoms and found that 50% had abnormal CT scans of their brains, most commonly seen were ischemic lesions caused by vasculitis.
Also of significant findings was that the recommended dosing of a three week course of antibiotics is not long enough to eradicate the borelliosis spirochete. Many patients are ending up on months of antibiotic therapy. Again, clinical studies vary in this area and there is no hard core evidence to support this theory.
Doctors need to treat their patients based on symptoms and not rely soley on serology findings.
Then the questions becomes, Is there a post lyme phase or is it all active lyme disease that needs to be treated? Based on symptoms, patients should be treated aggressively at the first sign of infection. That's the science lesson for today.

1 comment:

Kat RN said...

Lyme is an awful and unfortunately often misunderstood disease. I am really sorry that your symptoms have returned. I do hope all will end well and that your treatment will be effective.