LymeDisease.org (LDo) held "MyLymeData2017: Overcoming Lyme Disease" in San Ramon, CA on April 8th, 2017. It was a great event with a large turnout. Dorothy Leland with LDo served as the event moderator. I would estimate 250 people or more were present. Speakers included Lorraine Johnson JD, Ray Stricker MD, Christine Green MD, Raj Patel MD, and Jennifer Sugden ND. I captured a few notes on each of the speakers which you can read below. Enjoy.
Lorraine Johnson, JD, MBA is the CEO of LymeDisease.org and spoke on "Latest Results From MyLymeData" and shared:
- LDo was founded in 1989 with a focus on researching a disadvantaged disease.
- Lyme has had only three small clinical trials funded by the NIH.
- There is no interest in Lyme from industry.
- The CDC underestimated Lyme disease by at least a factor of 10 (30K vs 300K new cases per year).
- Generic antibiotics are primarily used and this is not profitable.
- The last NIH trial for chronic Lyme was conducted over 15 years ago.
- We need trials with sample sizes in the thousands; not small numbers.
- The first national patient registry on Lyme is MyLymeData.
The MyLymeData project is a big data project for Lyme disease. The more information we can get, the better. There are over 7,000 people signed up now and the goal is to have at least 10,000. - They expect to gather more data than any prior research study.
- The Lyme community is interested in diagnostic testing, treatments, natural therapies, Parkinson's and Lyme, brain rehabilitation, who developers chronic Lyme vs. not, what triggers relapses, the role of co-infections, and the impact of tailored treatments.
- 70% of respondents were originally diagnosed with something else - 14% MS, 2% Parkinson's, 2% ALS, 2% Multiple System Atrophy.
- Alternate therapies were popular among respondents. Herbs, detoxification, homeopathy, acupuncture, and sauna were at the top of the list. Editor note: Coffee enemas were not included or I predict they would have been there as well.
- 331 people tried stem cell therapy and it was reported to be the least effective option of those that participated in the data collection. Editor note: I wasn't surprised to see stem cell therapy this low on the list. I think people look to stem cells as the thing that will fix it all, but it doesn't. If your home is full of mold, you have to fix it. If you have microbial overgrowths, you have to address them. If you have dietary issues, you have to change what you eat. I have seen some have success with stem cells, but it was after a lot of prior hard work and the right timing.
- Herbal protocols were the most effective.
- Rife therapy was high in side effects and not highly effective.
- Only 50% of people were on antibiotic therapy.
Ray Stricker, MD spoke on "Designer Drugs For Lyme Disease: The New Pharma Frontier?" and shared:
- Lyme generally comes from the Ixodes tick.
- The Amblyomma tick (Lonestar tick) may have Ehrlichia, Rocky-Mountain Spotted Fever, and may carry Lyme.
- A fossilized tick from 20 million years ago was recently found in the Dominican Republic and contained monkey blood with Babesia microti.
- Lyme rashes don't itch generally; ringworm does.
- Only 20% get Lyme arthritis. Many get musculoskeletal pain that migrates.
- What can pharma do better? Better testing and better treatment.
- Over 300,000 cases per year of Lyme. 6 times more than HIV/AIDS, 20 times more than Hep C, and 30 times more than TB.
- 237 bacterial strains found in Ixodes ticks.
- Birds disperse ticks widely.
- Mice, shrews, squirrels, and chipmunks carry ticks.
- Person to personal genital contact transmission is probably. Sexual transmission is proven in animal models.
- With big data, 2/3 fail conventional antibiotic therapy.
- Two-tier testing is 46% sensitive for Lyme. With HIV, testing is 99.68% sensitive. In Lyme, there are very few false positives.
- IGeneX WB sensitivity is 97% as compared to 46% for the two-tier system.
- Advanced Labs Borrelia culture is 43% sensitive after one week but 94% by 16 weeks.
- Companion diagnostics include C4a and CD57.
- Cytokine expression is complex but can over time show reduction with Lyme treatment.
- Current favorite antibiotics used are 50-70 years old.
- 2/3 of cases treated with antibiotics initially develop chronic Lyme.
- Persister tolerate antibiotics; they grow again after the antibiotics are stopped.
- New targets that could be explored for Lyme treatments include blocking clip protease, HtrA protease, RNA Helicase family (HrpA). There is a patent by the CDC for a protease inhibitor for Lyme.
- Plants have lots of proteases.
- Lyme patients have to become more activists with the pharma companies to develop new solutions.
- He has not seen any cases of children getting Lyme during pregnancy out of 50 children when the pregnant mom was on antibiotics during the pregnancy.
- Borrelia does not survive blood-banking very well, but Babesia does.
- Blood banks will take you as a donor if you have had Lyme. Editor note: People with Lyme should still not be donating blood.
Chris Green, MD spoke on "How To Combat Stealth Pathogens Like Lyme & Co-Infections" and shared:
- Ticks come to use from squirrels and mice.
- Gardening can be a source of exposures.
- Diagnostics and treatment of stealth pathogens is different from that of frontal attack pathogens.
- Most doctors think you are looking for zero or at most for one bug.
- Stealth pathogens have indeterminate incubation periods, can have asymptomatic carriers, engage the innate immune system, and manipulate the adaptive immune system.
- Lyme tricks the immune system by changing its appearance.
- Lyme rarely induces sterilizing immunity (just because you had it once doesn't mean you can't get it again).
- 40% of cats, wild or domestic, carry Bartonella.
- 8 of 10 squirrels have been shown to carry Lyme in one study in California.
- Frontal attack pathogens are the "dummies of the bugs". Stealth bugs are much smarter. They recruit neighboring infections.
- All life wants to live in a community; enter biofilms.
- Lyme is a partial anaerobe. Aerobes and anaerobes live in separate places in the biofilm.
- Mixed species biofilms are more stable as a community.
- Coinfections may include Babesia, Bartonella, Ehrlichia, Anaplasma, Rickettsia, and more.
- Infection with two or more makes it more difficult to eradicate either.
- 40% of bacteria in the mouth cannot be cultured. 99% of environmental bacterial cannot be cultured.
- PCR is not sensitive; the organisms are not living in the blood.
- Culture is poor, PCR is not sensitive, and antibody testing is not good.
- No test can rule in or rule out Lyme.
- Galaxy Labs is finding Bartonella in striae.
- RX treatment options, botanicals, silver, iodine.
- Probiotics, prebiotics, optimize vitamin and mineral state.
- Biofilms in general are good thing; have to be careful how these are approached.
- Tigecycline disables efflux pumps (these pumps allow organisms to pump antibiotics out so they are not affected by them).
- Must maintain fitness.
- Use 14 of 21 meal rule where 14 of 21 are high quality, health supporting meals.
- Need to control, not squelch, inflammation. We need some inflammation to respond to microbes.
- Ceftriaxone, tetracyclines, macrolides, and quinines have the ability to modulate inflammation.
- Omeprazole blocks effluent pumps.
- Imipramine, Phenothiazine, SSRIs block effluent pumps in certain bacteria.
- Berberine (as from Goldenseal) disables the bacterial pump.
- Coptis disrupts NorA pump.
- Often the immune system is strong.
- Explore Mast Cell Activation Syndrome.
- http://www.christinegreenmd.com
Raj Patel, MD spoke on "Treating Lyme Disease in the Context of Mold Illness" and shared:
- He shared that he had his own personal experience with Lyme and mold illness and knows what it takes to get well. He is hard on his patients as he wants them to do the things they need to do to get their lives back.
- Always address inflammation before treating Lyme.
- There is almost always a history of moisture damage in the patient history.
- Uncontrolled inflammation is when C4a is > 10,000, MMP9 is > 500, and TGFb1 is > 7,000.
- When C4a is > 10,000, this is most likely mold or viral and not Lyme alone.
- Ask what is blocking you from responding to Lyme treatment? If something stops working after a few months, something is blocking the system from responding.
- Mast cell activation (MCAS) can prevent Lyme treatment from working.
- Inflammation damages the hypothalamus and endocrine system including MSH which can lead to lower melatonin and then to sleep problems; making everything worse.
- Disrupted vitamin D metabolism leads to viral activity.
- Mold illness symptoms are similar to Lyme; they cannot be separated.
- Low VEGF results in lower oxygen in the muscles and exercise intolerance.
- The definition for Lyme on a NeuroQuant is narrow; he has not found one in his patient population.
- Basic approach is to eliminate exposure, reduce inflammation, treat Lyme and coinfections, treat MARCoNS, and prepare for VIP.
- Step 1: Reducing Exposure
- Eliminate exposures - work, home, school, churches, doctor's offices. The more avoidance, the faster the recovery.
- Cholestyramine works best when out of ongoing mold exposure.
- HERTSMI-2 is not as good as an ERMI for initial testing. Neither test for VOCs which can be another problem in a water-damaged building.
- Provocative Serial C4a is done to confirm environment is safe. A baseline C4a is taken. Cholestyramine is given for 4 weeks and then stopped. Another C4a is taken. The patient returns to their home. Another C4a is taken for 5 days. If the C4a goes back up, the home environment is still an issue.
- If the C4a is the same after the 4 weeks of Cholestyramine, consider viruses.
- Remediation can become challenging due to reactivity to small amounts of mold and mold toxins.
- Air samples are not adequate for testing; Stachybotrys sticks and is not found in the air.
- Step 2: Reducing Inflammation
- Cholestyramine helps to reduce inflammation by removing mold toxins from the body.
- If C4a, TGFb1, MMP9 are still high, consider and treat viruses.
- With chronic viral reactivation, why is the patient immuno-compromised?
- If lymphocytes are high normal, this could be a viral issue.
- Nagalase may be high even with normal viral titers.
- Step 3: Treat Lyme
- Pharmaceuticals, herbs, oxidative therapies
- Biomagnetism from Dr. Goiz - not a lot of science but clinical observations are impressive. Works best towards the tail end. Patients experience die-off reactions. Allow him to keep antimicrobials to lower dosages.
- Step 4: Treat MARCoNS
- BEG or BEC (Clindamycin) spray
- Step 5: VIP
- Need normal inflammation markers before going to VIP
- VIP brings the remaining 30% to his patient's recovery.
- It reverses hyper-reactivity and gives patients their freedom back
- VIP has been observed to:
- Raise MSH
- Downregulate aromatase
- Correct C4a, TGFb1, MMP9
- Reduce MCS
- Increase VEGF
- Help vitamin D metabolism and address viruses
- Correct ACTH and HPA axis
- Before VIP use, he likes to see a nagalse of 0.6 or less.
- Need to have normal VCS, clean ERMI, and no MARCoNS before starting VIP.
- If C4a or TGFb1 go up 15 minutes after the first test dose, there is still a mold issue.
Jennifer Sugden ND spoke on "Pediatric Lyme Disease" and shared:
- It is not uncommon to see the immune system not be able to handle one more thing and then Lyme takes hold.
- Best to do the Western Blot 3-4 months after exposure.
- Often see bands 23-25, 39, and 41 early and 31, 34, and 83-93 later.
- It is impossible to get every single bug out of the body; we have to make it inhospitable to pathogenic microbes.
- Adrenal issues can make people feel like their kidneys hurt.
- ZRT Labs can test hormones with a finger stick.
- Spectracell testing can be helpful for vitamin deficiencies.
- Best for saliva testing is Diagnos-Techs or ZRT Labs.
- Urine testing is newer for cortisol. Is available from ZRT Labs. Urine testing is accurate for hormone metabolites.
- For adrenals, she may use hydrocortisone with other support to give the adrenals a vacation.
- DHEA may be used when needed, if the severity of the fatigue is high, and when months to years of illness have occurred.
- When Lyme flares with monthly menstrual cycles, artificially stopping the cycle for a period of time may allow the Lyme treatment to progress forward more rapidly.
- Ashwaganda, Holy Basil, Rhodiola, Licorice, Panax Ginseng, Eleuthero, Adaptocrine, B12, P5P, C, Thiamin, Magnesium, Riboflavin, Zinc, Potassium, Chromium, and Glandulars may be used to support adrenals.
- She likes Seroyal HAD.
- Uses low potency homeopathics to stimulate and high potency to calm adrenals.
- Apex Adaptocrine is a good modulator for the adrenals.
- Can use herbs on the skin in children that don't like the taste. Can also put in capsules.
A couple of notes from the Q&A at the end of the day:
- Autophagy or cellular cleaning may be helped with turmeric based on an interview with Dr. Stephen Phillips.
- Saccharomyces products often have dairy; Designs for Health does not.
- Prebiotics may feed SIBO and other gut pathogens.
- Jumping into chelation therapy often does not lead to higher ground.
- Dr. Patel has seen transmission of both Borrelia and Bartonella in pregnancy. Babesia may not be as easily transmitted but has been shown to be transmitted in cattle.
