Welcome to MedHelp. You can try ilads. org for a LLMD. Actually the 8 weeks of Rocephin is pretty significant treatment for lyme. I have read Vancomycin also works very well for lyme but blood levels have to be monitored so it is more difficult. It sounds like your doctor is doing a good job treating you IMO. A second opinion with a LLMD never hurts though.
Treatment requirements seem to show a lot of variation from person to person, though it is good that your doctor has been so helpful. I sent you a PM with doctors in the DC area, in case you are willing/able to travel that far.
I was diagnosed with Lyme earlier this summer. I have laready gone 28 days on docyc and my titeras are still high for active lyme. Today I'm starting another antibiotic treatment. My primary docotor is working with an infectious desease specialist, but I really want to see a LLMD. I'm very worried about this thing takingover my life. My daughter is two and deserves a mommy who can run and play wit her. If you know of any LLMD in the DC area I would really apprecitate it.
Hi can anyone recomend some LLMD s in the Md, D.C, Va area.
I just had a baby 5 mo ago and I can barely move. My rheumatologist swears I don't have lyme, just arthritis. please help.
Here are some places to find referrals:
lymediseaseassociation [dot] org -- this is recommended as a source by ILADS, the main association of Lyme MDs.
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [cot] com
or google/search "LLMD Detroit" or "LLMD Virginia" or whatever your geographic area is. Try several different search approaches, and if you don't get a good feeling about one, try another ... just like with any doc.
If it's any comfort, rheumatologists are well known for not understanding Lyme. Also infectious disease MDs, but there are probably exceptions to that rule. It all depends on the individual doc.
Best wishes to you -- let us know how you do, okay? Take care.
Hi sabrina2010, I sent you a list that is hopefully up-to-date through MedHelp private message.
Email me at "nexus dot lyme at gmail *******". Also join lymefriends.org to talk to us. I want to tell you that I think people with lyme may be auto-immune. This is very likely for women after pregnancy from vitamin D spikes at this time that allow pathogens to take over and cause auto-immune. I'm debating whether to get treated for Th1 disease (the new auto-immune model caused by pathotens in the cells) or continue treatment for Lyme disease. Th1 disease includes lyme disease though. Look up the "marshal protocol" mpkb.org and bacteriality.org, watch the video about women there. Also watcht he youtube video by Trevor Marshall called "autoimmunity explained in 10 minutes". Good luck. Also are you sure you have lyme? did you get the circular rash or see the tick bite? Otherwise, you might have it, but you can't be as sure so you might just have th1 disease. You could even consider telling the ID doc about the Marshal protocol once you learn about it.
The prevailing view of part of so-called 'mainstream medicine' is that Lyme symptoms extending beyond a couple of weeks of antibiotics are due to an auto-immune reaction of the body, trying to kill bacteria that are no longer there.
Compare that to the ILADS (International Lyme and Associated Diseases Society) view that Lyme bacteria have unique characteristics that enable them to survive in the body despite treatment with a short course of antibiotics, and to then rise up again once the antibiotics are done. (This is not as crazy an idea as mainstream medicine makes it out to be: it is widely accepted that some bacteria such as those causing tuberculosis have a long and slow reproductive cycle, and it is during reproduction that bacteria are most susceptible to antibiotic treatment. Lyme bacteria [B. burgdorferi] similarly appear to have a long reproductive cycle. Therefore a long course of antibiotics is appropriate in treating Lyme.)
Like mainstream medicine, Trevor Marshall appears to believe the immune system to be a key problem in treating Lyme, but on a different basis from that of mainstream medicine. My difficulty with the Marshall approach is that it is spoken of as a magical incantation with followers who Truly Believe. There may be something to Marshall's approach, but I remain skeptical of any treatment that is sold as a quasi-religion.
The references to Th1 in the post above sound very mysterious, but pasted at the bottom of this posting is the abstract of an 8 year old article I found at random on PubMed, discussing the rise of Th-1--mediated autoimmune diseases, specifically asthma, eczema, and allergic rhinitis [aka hay fever]. The point of the article is that allergies are rising due to increased contact with allergens in the environment. If your point is that Lyme bacteria are causing an allergic reaction in people strikes me as ... not logical.
'Mainstream medicine' holds the point of view that you seem to, that any symptoms persisting after a couple weeks of antibiotics for Lyme are due to the body overreacting to bacteria that are no longer there, and that a couple weeks of antibiotics are all that is needed to kill Lyme once and for all. Interesting that the time-space continuum would double back on itself so that Marshall (in your reading) and mainstream medicine have the same point of view: if you're sick, it's autoimmune.
The absence of a tick and/or a bullseye rash does not rule out Lyme. The stats put around that a large percent of Lyme patients had a tick or bullseye rash are calculated backwards: when tick/rash are the main diagnostic signs of Lyme, then those with tick/rash will be overrepresented in the stats of Those Are Deemed To Really Have Lyme.
I have read that Marshall insists that his followers hide from the sun because sunlight produces Vitamin D that suppresses the immune system, so to down-regulate the immune system, you stay out of the sun for an extended period of time. The most coherent explanation I have read of Marshall's approach is in a book by Bryan Rosner, but I'm still not sold. I do wonder if mass doses of Vitamin D are all they are cracked up to be, but that's a continuing controversy.
Bottom line: I don't think it's warranted to classify Lyme disease, which is caused by a bacterium, as an autoimmune disease and nothing else.
Clin Exp Allergy. 2002 Jan;32(1):37-42.
Coincidence of immune-mediated diseases driven by Th1 and Th2 subsets suggests a common aetiology. A population-based study using computerized general practice data.
Simpson CR, Anderson WJ, Helms PJ, Taylor MW, Watson L, Prescott GJ, Godden DJ, Barker RN.
Department of Child Health, University of Aberdeen, UK. c.***@****
BACKGROUND: The recent rise in the prevalence of immune-mediated diseases has been attributed to environmental factors such as a lack of microbial challenge, or dietary change, that deviate the overall balance between mutually antagonistic subsets of T helper (Th) cells.
OBJECTIVE: An alternative proposal is that recent environmental changes have resulted in an immune system that is more likely to produce both Th1 and Th2 responses against benign antigens. The prediction of this hypothesis, that Th1 and Th2-mediated diseases are not mutually exclusive, and may be positively associated, is tested here in a whole population.
METHODS: Data from General Practices participating in the Scottish Continuous Morbidity Recording (CMR) project were used to determine the coincidence of the major Th2-mediated atopic diseases; asthma, eczema and allergic rhinitis, with the Th1-mediated autoimmune conditions; type I diabetes, rheumatoid arthritis and psoriasis. We also identified the prescription rates of inhaled therapy for asthma in patients with Th1-mediated disease.
RESULTS: There was a significant increase in the risk of presenting with a Th1-mediated autoimmune condition in patients with a history of allergic disease (standardized prevalence ratio (95% confidence interval) 1.28 (1.18-1.37)). Likewise, the standardized prevalence ratios of presenting with either eczema (1.67 (1.48-1.87)) or allergic rhinitis (1.22 (1.02-1.44)) were significantly increased in subjects with a history of Th1-mediated disease. There was a particularly strong association between current psoriasis and current eczema (standardized prevalence ratio ofpsoriasis in subjects with eczema 2.88, 95% confidence interval (CI) 2.38-3.45). There was also a significant increase in prescriptions for inhaled asthma therapy in patients with Th1 disease.
CONCLUSION: It is concluded that Th1- and Th2-mediated diseases are significantly associated in a large General Practice population. This finding supports the proposal that autoimmune and atopic diseases share risk factors that increase the propensity of the immune system to generate both Th1- and Th2-mediated inappropriate responses to non-pathological antigens.