I have a long term lyme patient who has recovered from most of her lyme symptoms with the exception of intermittent hypo tension 80/40 with pulse in the 40’s known as autonomic insufficiency or pots or dysautonomia. For years when she has a lyme flare she will experience strabismus. I am convinced that ocular damage is from the lyme and is part of the etiology for her flares as well as the dysautonomia. None the less researching this subject quickly makes one realize that it is complex with many suspected etiologies. I have started her on florinef .1 mg for now. So anyone have any other pearls of wisdom? She has been on cortef for years low dose. Her endocrinologist did not check with me and also put her on cortef so she got a 30 mg dose for a month or so, of course she felt great. I have had her consult with a cardiologist, endocrinologist as well as neurologist. They just kind of threw up their hands especially with a ” lyme dx” in the mixture. I will consult next week again with her neurologist in an effort to co-manage this case but may get left holding the bag as I usually do in trying to treat lyme patients. Anyway I would appreciate tips on treating this common problem with our lyme patients.
Have her check her VCS (visual contrast sensitivity) at Surviving Mold at a time when n she is well and again when she is symptomatic.
Changes in the results may indicate exposure she may be having a mold exposure, or exposure to a multitude of antigens which are triggering her innate immune response , no longer self correcting since her Lyme disease caused dysregulation. It would be good to also check her C4a (Complement 4 anaphylatoxin), MMP-9 (Matrix metallopeptidase 9), VEGF (Vascular endothelial growth factor), TGF beta-1 (Transforming growth factor beta-1) when she is symptomatic. Run that group again when she is asymptomatic, and add VIP (Vasoactive intestinal polypeptide) and MSH (Alpha melanocyte stimulating hormone). You can find information about these tests at Lab Tests and information about how to order them, and where at Lab Orders.
This is Ritchie Shoemaker’s work and it can be confusing because it has lots of acronyms for uncommon and multifunctional immune modulators. There are other parts of his protocol but just the VCS online, and MMP-9, TGFbeta-1, and VIP (all of these from Labcorp) will let you know if further work up will be useful.
I have been using Dr Grubb’s protocols for dysautonomia for years, they are good band aids but don’t address the core problem. Ritchie’s protocols don’t work for every patient but they do help us better treat our “post Lyme” patients and a lot of the active Lyme patients who “herx” yet never improve.
Ritchie will be presenting his latest work in Santa Rosa on Oct 22nd and 23rd, and we will be helping him to give people an explanation of the fundamental concepts and terminology he uses.
I have struggled for years to apply his approach. Like many original thinkers there are steps in his process that are like air to him, leaving the rest of us stumbling in the dark. We have worked with him to address this issue, so that he can better teach people how to really use his work. Dr. Neil Nathan from our offices will be at the conference with a “Shoemaker for Dummies” talk to provide a foundation for understanding what Ritchie is doing. Other practitioners from our offices who also use Shoemaker protocols will be present to answer questions.
Learning to use Ritchie’s approach has improved the lives of many of my patients. Better understanding of persistent immune activation allows me to make better choices for my patients care.
The October 22-23 Biotoxin Illness conference, with Dr. Ritchie Shoemaker is open to the public on Saturday, the 22nd, and to medical professionals on both Saturday and Sunday, the 22-23rd. For more information, look HERE.
Dr. Eric Gordon is the founder of Gordon Medical Associates. What Dr. Gordon emphasizes is listening to his patients. “I believe my patients. Their description of what is going on in their body is the most accurate way we have to assess what is going on with them. I interpret the information they present, and blend it with laboratory results and imaging and other tests to determine a protocol that is customized to their condition.”