Archive for December, 2015


Kripalu: “Casting a Wider Net”

After Friday, our first night at Kripalu (Kripalu: “Closing in on the 8%), we were certainly better educated on the Lyme-MSIDS (Multiple Systemic Infectious Disease Syndrome) questionnaire and the Lyme-MSIDS 16 point diagnostic map.

We had received handouts of the Lyme MSIDS questionnaire, a way of assessing and scoring one’s likelihood of having a tick-borne illness. That same information can be found here: http://www.eomega.org/article/is-it-lyme-disease

While the questionnaire is used to determine likelihood of tick-borne illness,  the 16-point diagnostic map shown in the below video is used to actually hammer away at the effects of the tick borne disease or the exacerbation of underlying issues, both of which determine ones ability to overcome tick borne infections. The factors that need to be addressed as part of the 16-point diagnostic map include 1. Infection (bacteria, virus, candida, parasites) 2. immune dysfunction (ANA. HLA-DR4) 3. inflammation IL-6, IL-1, TNF-alpha which cause “sickness syndrome” 4. Toxicity (heavy metals, molds, toxins) 5. Allergies (food, drug, environmental) 6. Nutrient and enzyme deficiencies 7. Mitochondrial, 8. Neurological, 9. Psychological disorders 10. Endocrine imbalance (low hormones including estrogen, testosterone, adrenal, thyroid) 11. Sleep disorders 12. Autonomic Nervous System dysfunction including POTS–postural orthostatic tachycardia syndrome–or bladder problems 13. G.I. disorders (dysbiosis, parasites, IBD) 14. Elevated LFTs (liver function tests) 15. Pain Syndromes and 16. Deconditioning.

Both the Lyme-MSIDS questionnaire and the Lyme MSIDS 16-point diagnostic map are great tools for the practitioner and patient. In fact, Dr. Horowitz encourages patients to be proactive and bring these kinds of tools back to their doctors, all of which is covered in his book “Why Can’t I Get Better?  

See following video (not taken at Kripalu) that reveals the 16-point map and what needs to be addressed in order to achieve recovery:

 

By Saturday morning, I was ready to immerse in a practice quite unfamiliar to me and out of my comfort zone: yoga. Gentle Yoga began at 6 a.m. My eyes burned from my pal and roomie Dana and I gabbing and giggling until 12:30 a.m (good thing we were located in the annex) and my head ached from not having immediate access to coffee. But the dimmed lights, background chimes and chants, slow/deliberate/strong stretches, and soothing instruction were exactly what I had craved, envisioned, and expected in a Kripalu experience.

At 9 a.m. we headed once again to the Sunset Room of the main building where Lee and Dr. Horowitz lead a brief guided meditation before beginning the 3 hr presentation that continued our education on Lyme MSIDS.

The conversation and presentation continued, cruised, curved, carried on, and even confused. So much information, so complicated yet critical. What follows are sound bites from Dr. Richard Horowitz as part of a memorable morning (as best and accurately as I can reflect and paraphrase them):

  • Pay attention to what sounds like YOU on the MSIDS map…that’s what you need to fine tune.
  • Lyme Navigator is an app being developed by my team that will allow docs and patients to apply the Lyme MSIDS questionnaire and map.
  • We need to cast out a wider net when it comes to Lyme…do routine blood work and tick born disease but also viruses, candida, fungi, mold.
  • Galaxy Labs is my go to for Bartonella testing. LabCorp and/or IgeneX for Babesia. IgeneX for Borellia. Imugen Labs is new and may be able to test for more species of borrelia, such as borrelia hermsii (relapsing fever).
  • IgeneX has passed the 95% proficiency test. The sensitivity of an ELISA test is 56%. Essentially a coin flip. In fact, an ELISA can miss up to 81% of cases, especially for those that did not have an EM rash. That’s little known information, available only because of a request based on the made as a result of the Freedom of Information Act.
  • Spirotest is a new test that will allow evaluation of inflammatory mediators, including cytokines CXCL9, CXCL10 and CXCL19 in order to determine your cytokine signature.
  • People with elevated levels of IL-1, IL-6, TNF-alpha and nitric oxide are typically the ones that exhibit ‘sickness syndrome.’
  • You have to pay attention to food allergies, which can lead some to experience writhing pain. You might need to avoid foods that cause a histamine response, including fermented foods like kimchi as well as aged cheese, alcohol, citrus, chocolate and smoked foods. I have this problem…they call me “Itchy Ritchy”.
  • I often test vitamin D levels in my practice. Both the 1-25 form (made in kidney) and 25 OH form (made in liver). A ratio of 1-25:25-OH > 2 is indicative of inflammation.
  • 25% of patients in my practice are deficient of minerals, like magnesium.
  • 25% of patients I see have low glutathione levels.
  • 10% of patients I see are low or missing immunoglobulins, such as IgA, M or G.
  • Intravenous immunoglobulin therapy is approved for individuals with immunoglobulin deficiency.
  • Any ONE or TWO of the following bands should be considered indicative of Lyme: 23, 31, 34, 39, 83-93. 41 is not because other spiral shaped bacteria may make this show as positive, such as certain mouth bacteria.”
  • In Beijing, I have treated babesia with mepron and dapsone.
  • CD57 cannot be used as a reliable marker.
  • People often say studies don’t exist that show that Lyme persists…I can name 6. Then 5 more. And 5 more. And 6 more after that. And two more after that. It’s science vs. politics.
  • NF-kappa B is like an interleukin ON switch in the cell nucleus. You need to turn it off. With things like glutamine, alpha lipoic acid and antioxidants. When you turn this switch off, resistant symptoms can get better.
  • Plaquenil is contraindicated for people with psoriasis.
  • I use 3-4 different probiotics at the same time. UltraFlora. Saccharomyces boulardii. And VSL. This provides high-dose and varied support.
  • My best advice for pushing through a herx: 1. Alkalize the body. Use lemons and limes (sounds counter intuitive but is not) or AlkaSeltzer Gold (not the regular one which has aluminum, the GOLD) 2. Essential Pro Liposomal glutathione–take 8 softgels a day (2,000 mg) with AlkaSeltzer Gold. Within a few hrs, symptoms should die down. If not, repeat. 3. Add Smilax (sarsparilla) 30 drops x4 per day for extra support. If needed you can also consider toxin binders like charcoal or bentonite clay (hours away from a supplement or meal). If possible, addding low dose naltrexone (LDN). If none of this works, take a break from all of it for a day and restart or rotate some of it back in.
  • If someone continues to herx on intracellular antibiotic drugs, I did what I swore I would never do–after watching my doctor stepdad Harris do it–I give intramuscular shots of Bicillin. This is extremely effective for my sickest patients. If i.m. fails, then that’s when I consider i.v. but I don’t actually do much i.v. in my office.
  • I advise some of my patients to take probiotic enemas. I use a product called Probiomax to put in the enema. It’s basically making sure to get probiotics in both directions! Bifidum bacteria work best.
  • I often get asked what to do with patients who can’t tolerate their antibiotics.  I typically advise pulse protocols to get around the gut intolerance. For instance taking intracellular probiotics every other day. And considering dapsone as well, which has no effect on the gut or flora. However, dapsone can cause severe anemia in patients may need high dose folic acid.
  • New biofilm busters alert! 1. PRMSE which stands for Phenolic Rich Mape Syrup Extract 2. cinnamon and peppermint 3. Stevia (whole leaf extract) 4. Pomegranate (high in ellagic acid)…imagine a “candy manufacturer” that can combine all of this…it would be like creating a  life saver candy…literally a Lyme Life Saver!
  • My “persister protocols” consist of various combinations of triple intracellular antibiotics (like doxy/rifampin/dapsone) pulsed with a cellular antibiotic.
  • Some of the drugs with highest anti persister activity includes daptomycin, clofazimine, carbomycin, sulfa drugs, cefoperazone.”
  • The Cowden protocol works and can help hold you stable, and includes Banderol, Samento and Cumanda.
  • Silver is not adequate and I have concerns about it’s long term effects.
  • Liposomal artemesia works better.
  • For viruses, I use 3,6 beta glucans, Transfer Factor, Mushrooms and olive leaf extract.
  • For candida, I use grapefruit seed extract (also works against cystic forms of lyme when combined with plaquenil), nystatin, caprylic, oregano, garlic, berberine).
  • LDN (low dose naltrexone) takes down inflammation and blocks IL-6, IL-12, TNF-alpha. I typically recommend 2mg for 1month, 3 mg for next month, then 4.5 mg.
  • Nrf-2 is activated when our bodies are under alot of oxidative stress. Foods and supplements can activate Nrf-2 in the cells of our bodies to provide antioxidant defense, including broccoli seed extract (2000 mg), resveratrol, green tea and curcumin  (2-8 grams per day, preferably with bioperine).
  • Follow a mediterranean diet as much as possible, and avoid sugar, gluten and dairy.
  • When it comes to detox, increase the amount of protein and cruciferous vegetables in your diet and add NAC (n-aceytl-cysteine), ALA (alpha lipoic acid), glutathione, magnesium, DIM (di-indolylmethane), and sulfurophane. I personally take DIM and sulfurophane every day because of a family history of cancer.
  • When it comes to oral or i.v. glutathione, liposomal oral glutathione will usually work just fine in high doses.
  • Tell tale signs of Erlichia is leukopenia (low white blood cell) and thrombocytopenia (low red blood cell) and sometimes elevated liver enzymes. Antibiotics used include tetracyclines (like doxycycline) and rifampin.
  • Borrelia hermsii can be manifest with petechia (affecting skin), Morgellon’s disease, vasculitis, granulomas.

 

And that is where we left off the for day. From all that we learned, it seemed obvious that the best advice overall was to “cast a wider net”. From identifying all infections as much as possible; to expanding treatment to potentially include not 1, not 2, but 3 intracellular antibiotics and adding pulsed cellular antibiotics if necessary; to embracing a wide array of supplement and herb options; to identifying food triggers, from allergens to histamine inducers; to expanding our knowledge of natural and “breaking news” new biofilm busters; and to triaging herx solutions all while broadening our overall approach with the 16-point diagnostic map. The best advice of all that I can provide to you in this moment? To get Dr. Horowitz’s book ‘Why Can’t I Get Better’ or find his lectures on youtube to use as a reference for most of the above. Then perhaps together we can slowly tame Lyme-MSIDS…with our wide casting nets.

Richard Horowitz, MD, and his wife, the lovely Lee, kicked off the weekend conference “Beyond Lyme & Other Chronic Illnesses: Reclaiming Your Health and Well-Being,” on the evening of Friday, December 4th. It was “healing with the Horowitz’s” at it’s finest.

We huddled eagerly–my girlfriend Dana and I among fifty or so professionals and patients–in the Sunset Room at the world renowned Kripalu Center for Yoga & Health, founded on the teachings and principles of Swami Kripalu, for a weekend of  both retreat and research.

That evening, Dr. Horowitz and Lee established the foundation for the next few days, including first grounding us all in meditation and blessings from their years studying Tibetan Buddhism. It was science meets spiritualism in scenic and secluded Stockbridge, MA.

Second that evening, they established Hope. Dr. Horowitz and Ying Zhang from John Hopkins, it seems, are on the verge of a breakthrough. Using mycobacterium drugs–like those used in leprosy and tuberculosis–in hope of cleverly and mercilessily attack the four main persisters: Borrelia, Babesia, Bartonella and mycoplasma. As Dr. Horowitz explains, he is typically successful in getting 92% of his patients better. But there is an “8%” that are the most difficult to treat. Could this breakthrough break the code for closing in on the 8% of people that are most difficult to get better? It could. I’ll never forget those chilling yet cheerful words: “We are closing in on the 8%,” Dr. Horowitz whispered.

It works like this. Dr. Horowitz first combines 2-3 intracellular antibiotics to reach the persister bacteria hiding in cells. This would be the “triple persister” cocktail. Then he pulses with a cellular antibiotic. This pulsing has been shown to be effective based on the incredible work of professor and researcher Kim Lewis of Northeastern University. Dr. Horowitz has found this regimen to be very successful for people who continue to have symptoms or relapses. BUT FURTHERMORE, he has now found with  the help of the work from Dr. Zhang that adding dapsone (pyrazinamide) to this regimen for the most difficult of cases…could be THE key to perishing the persisters for once and for all. Dapsone being that potential mycobacterium super drug used against Tuberculosis and leprosy.

Dapsone, or prazinamide, targets tuberculosis bacteria that have become “persisters,” which don’t respond to typical antibiotics. Zhang and Horowitz’s hunch that this will also work to combat “persister” bacteria associated with lyme and co-infections…has been promising. Very promising. And it is likely that Dr. Horowitz will publish work being conducted on his patients in the upcoming year. For more on the work being conducted by Dr. Kim Lewis and Dr. Zhang, read here:

Dr. Lewis:

http://www.northeastern.edu/news/2015/06/researchers-discovery-may-explain-difficulty-in-treating-lyme-disease/

Dr. Zhang:

http://beforeitsnews.com/health/2015/10/lyme-disease-persister-drugs-dr-ying-zhang-2593390.html

http://magazine.jhsph.edu/2013/fall/news-briefs/two-takes-on-lyme/

http://www.jhsph.edu/news/news-releases/2014/new-test-shows-promise-in-identifying-new-drugs%20to-treat-lyme-disease.html

Remember, however, that based on Dr. Horowitz’s own experience, about “92%” can get better with the approach of “hitting all targets” and combining antibiotics that work on the spirochete, cell-wall deficient (or “L-form”) and cyst forms of Borrelia. To help understand what that means, the first link below provides a table comparing Borrelia’s multiple forms, and the second link below provides a helpful overview regarding which antibiotics target which different forms.

Overview of different forms of Borrelia:

http://www.lymebook.com/top10forms

Overview of antibiotics that attack different forms:

http://www.treatlyme.net/treat-lyme-book/kills-lyme-germs-a-brief-antibiotic-guide

AND specific examples of some of Dr. Horowitz’s favorite combinations for attacking the various forms of Lyme (as well as co-infections like bartonella and mycoplasma) are shown in the pictures below.

KripaluLyme

KripaluBartonella

Photo credits: My friend and kripalu roomie Dana

Third that evening,  they discussed the “How & Why” of so many becoming sick with Lyme and co-infections. 1) A decrease in the fox population, and an increase in the mice population. 2) Climate change: ticks are emerging at least 3 weeks early forcing legislators to consider making APRIL Lyme Awareness month, not May! 3) Migrating birds: It’s why the Lone Star tick is now an unwanted visitor found in the eastern U.S. (a lone star tick can detect body heat and carbon dioxide from 15 feet away and will actively and aggressively move towards the source!) 4) It is now known that infected tick mothers pass infections, such as Borellia miyamotoi, to their offspring 5) Blood transfusions (4 out of 1,000 blood transfusions are now believed to transmit babesia), sexual transmission and maternal transmission to a fetus 6) Constant discovery of new borrelia species in addition to new co-infections 7) Continued lack of a gold standard for diagnostics and diagnostics that can adequately detect over 300 borrelia species world wide (and that can do so within the first 30 days of infection) 8) The reality of persisters, bacteria that persist despite antibiotic treatment and 9) Healthcare politics.

And lastly, Dr. Horowitz discussed what lay on the Horizon. The world, he explained, has included Lyme in a list of emerging pandemic disease, joining the likes of Ebola, West Nile and Dengue. All a threat to global health and world economics. Surely with this type of “recognition” will come a sense of urgency and a plan for action. Optimistically, Dr. Horowitz explains that he already feels that little by little, things are starting to “shift” in the diagnostics world. There is a new or soon to be new “C6 Elisa Test” that picks up more strains of Borrelia than current Elisas.  Regarding the Western blot, more and more are starting to realize that that just having ONE band is enough for a clinical diagnosis of Lyme disease, if other diseases have been ruled out. And the last shift that needs to be made, he indicates, is evolution of the PCR test to address additional strains of Borrelia, especially the strains that make people the most sick.

It was both enlightening and exhausting to be exposed to all of this information in our first evening at the Kripalu conference. Dana and I headed to our 9 p.m. massages. Our minds were ready for deep relaxation and deep reflection after all that we had heard. Our bodies were ready for the nurturing of healing touch. And we wondered where our dreams would take us, as we realized the irony of the fearful questions and curiosities swirling in our heads against the calmness of Kripalu and the confidence with which Dr. Horowitz spoke of the future.

DISCLAIMER: Lymewhisper makes every effort to accurately take and reflect notes, but makes no guarantee that information was perfectly captured or understood (which would be a feat even for someone without lyme brain) For that reason, I want to point you to Dr. Horowitz’s website where you can find out more about his book which has ALL the info you need at www.cangetbetter.com.