Two new patients this morning.
1) 24 year old male diagnosed with Post-Lyme syndrome. He is CDC positive for Lyme. He suffers with headache, stiff neck, chest discomfort, TMJ, anxiety, depression, floaters, joint pains- knees, hands, feet, facial tics, sleep disorder, trouble concentrating, muscle pains, urinary symptoms, numbness and tingling, poor balance and disorientation. He is barely holding together. He has a history of "spider bites" and rash. His neurological exam is highly abnormal. He has already seen a dozen doctors, including the best. He has been told that there is nothing to be done. Sorry. Only the internet led him to my door.
2) The second patient is a 30 year old female. She is also CDC positive for Lyme. She has disabling symptoms. Headaches and generalized pains are unbearable, even on narcotics. She can't walk. She can't work or care for her children. She suffers with swollen glands, night sweats, weakness of the left side of her body, numbness and tingling and progressing memory loss and global cognitive dysfunction. She has had numerous spinal taps, ER visits and has seen more doctors than she can keep track of. Her neurological exam is extremely abnormal. There is severe weakness of the left side of her body- upper and lower extremities. Her diagnosis: Post-Lyme. She did receive of month of doxycycline and was beginning to feel better. After it was stopped the rug was pulled out from under her. Everything returned- with a vengeance. Diagnosis: Post-Lyme. Again: there is nothing we can do. "More antibiotics just don't work"- her neurologist.
The IDSA is stacking the new Lyme panel, per the agreement with the Connecticut Attorney General: It has excluded doctors who have any experience treating Lyme patients.
The state of New York is questioning Clongen. "Why was an ELISA not done first?" We don't accept the results- send the blood to the CDC for confirmation.
Another documentary is in the works. Another celebrity has Lyme disease.
The more things change- the more they remain the same.
8 comments:
I am so glad you are posting all these cases. This is the most important thing you can do for us all, in a way. Case after case after case.
I just don't understand. I guess a lot more of us need to die to have this disease taken seriously.
Why is NY asking for an ELISA first? The CDC recently changed its surveillance criteria so that the two step process (ELISA first, then WB) has been changed so that only a WB is needed as the only confirmation. Does NY not know this?
The hitch is that it has to be IgG positive, for some reason. Not IgM positive.
See new case definition here:
http://www.cdc.gov/ncphi/disss/nndss/casedef/lyme_disease_2008.htm
It's such a shame what everyone with this disease is going through.
Our LLMD is in NY, he cannot even order testing from Clongen b/c it's not approved through the state Health Dept. We had to ask a doctor friend in CT to order the testing for my daughter from Clongen Labs.
If the CDC/NY State Health Dept. COULD shut down IgeneX (and the like) they WOULD. Obviously, IgeneX has been around a long, long time... they can't find a legit reason to close them. Hopefully the same will hold true for Clongen.
The CDC allowing for IgG positive WBs is very helpful- NOT. Lyme is an IgM disease. Less than 10% of CDC positives meet the IgG criteria.
you're making me cry. Again. This is so insane. And those are such common stories. And those are just two patients who've lucked out and found someone who'll treat them. How many more won't?
Hey- Lymemd blog readers- I just realized, we should post this one on Facebook in the 'networked blogs' module (it's an app you have to subscribe to, but Networked Blogs should get really wide readership):
If you're on Facebook, go sign in as a reader of LymeMD here, it'll get the blog shown to a lot more people:
(Facebook will make you install the NetworkedBlogs app to do this)
http://apps.facebook.com/blognetworks/blog/lymemd/
J Clin Invest. 1986 Oct;78(4):934-9.
Antigens of Borrelia burgdorferi recognized during Lyme disease. Appearance of a new immunoglobulin M response and expansion of the immunoglobulin G response late in the illness.
Craft JE, Fischer DK, Shimamoto GT, Steere AC.
Using immunoblots, we identified proteins of Borrelia burgdorferi bound by IgM and IgG antibodies during Lyme disease. In 12 patients with early disease alone, both the IgM and IgG responses were restricted primarily to a 41-kD antigen. This limited response disappeared within several months.
In contrast, among six patients with prolonged illness, the IgM response to the 41-kD protein sometimes persisted for months to years, and late in the illness during arthritis, a new IgM response sometimes developed to a 34-kD component of the organism.
The IgG response in these patients appeared in a characteristic sequential pattern over months to years to as many as 11 spirochetal antigens. The appearance of a new IgM response and the expansion of the IgG response late in the illness, and the lack of such responses in patients with early disease alone, suggest that B. burgdorferi remains alive throughout the illness.
PMID: 3531237 [PubMed - indexed for MEDLINE]
free full text here:
http://tinyurl.com/7o9xyf
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