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A few weeks ago, there was a local showing of Under Our Skin and there was a post movie discussion with a local LLMD,Dr. S B, NY, and Dr. M., from the movie. Below are my notes from the discussion. Many thanks to the organizers of this event!
Some good nuggets of info from these good Drs. I have been meaning to type these notes up and put them up sooner, but life and lyme got in the way. Please remember these are just my personal notes that I took very quickly during the discussion.
Dr. B- New Lyme Elisa C-6 test, good test if actually + in a patient because it is quantitative. But not all patients have + test. If properly treated, titers should go down with treatment.
For lyme treatment, he treats as follows: acute infection = 6-8 weeks of abx, chronic lyme = longer. Always follow up with patients. If not relapse in 1-1.5 years, you probably �got it�
If you find a tick on your body, Igenex can test it for borrelia, babs and ehrlichia. <50% get rash. Treat for three weeks if there is exposure.
If there are 100 neuro lyme patients, only 30% will be + with spinal tap. Not a good diagnostic test.
He talked about using pulse therapy- M-W-F regimen, how he knows of a doc in Massachusetts that gives patients 1 month/year of antibiotics to stay ahead of things
Uses anti-microbial herbs against lyme, babs, bart
Patients are becoming more empowered for their health. Do not accept other diagnoses; your health is in your hands. HMO system set us back with 7 min appt with Drs.
Western medicine is good with �horizontal disease�- when you are flat out and need life saving measures. Western medicine is bad with �vertical disease� where you are sick but still upright like with chronic lyme. Need to address multiple factors in vertical disease- nutrition, allergies, toxicities, hormones, lyme, etc.
Have to be advocate for own health, some people not serologically + for 5 years after diagnosis.
Dr. M- Seemed in very good health and great spirits. Definitely a sharp guy!
Lyme is a �relapsing disease�- relapses are not to be a surprise, but expected. First cousin to lyme is named relapsing fever Borrelia. Borrelia is able to change its gene structure and the genes manufacture a new protein the body has never seen, that the body has to make new antibodies to.
Dr. N of U of Texas showed how 1 tick can carry 3 separate strains of lyme, transmitted in 1 bite. Each different strain can show a different clinical presentation. So antibody testing does not tell the whole story as there are up to 52 genotypes of Borrelia.
All CDC kits are based on 1 strain, B31 from shelter island. Igenex uses B31 and 297, there are no test kits for the 50 other strains.
35-40% of ticks carry coinfection in Dutchess Co NY and surrounding area. 70-75%+ carry lyme.
You can never say you are �cured� of lyme.
Germans wrote a rebuttal to IDSA guidelines- available on the Internet. They are publishing 150+ cases of chronic lyme to show it exists.
There is lots of Babs in the Hudson Valley- it will travel all the way up to Canada. Very difficult to diagnose in the blood but major symptoms in the rest of the body. It is a threat to our blood supply.
Each babs test is only good for 1 strain- Microti or Duncani.
Talked about his paper with Dr. S which recently was published in PLOS1. Re:bugs can sit in body in dormant state in BIOFILMS.
It is an exciting time to be alive with all the research being done. Gene chip technology will eventually replace other blood test methods. Proteome studies are promising technology- fingerprint patters of fibromyalgia vs lupus vs lyme.
New blood culture test- impressive results- gets + results in chronic lyme patients.
Posts: 233 | From Hudson Valley | Registered: Jun 2010
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poppy
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Many thanks for this report.
Posts: 2888 | From USA | Registered: Mar 2004
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lax mom
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Thanks for sharing this with us.
I'm eager to find out more about the fingerprint patterns. I always have a little thought in the back of my head "maybe it's lupus..."
At my LLNP appointment this week I asked about different variety of Borrelia and having lived and visited many different places how that influenced testing.
52 genotypes of Borrelia
I've lived in MN, CA, Germany, CT, IL, and MA and visited other countries. I suspect different parts of world and in the US are pockets of different genotypes.
Posts: 120 | From MA | Registered: May 2010
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