In October 2010, I attended the ILADS 2010 Annual event. The event was packed. Almost 400 people attended in person and over 1,000 people watched on the live webcast. It is exciting to see so many people taking an interest in this controversial area of medicine. The event was full of great information and people working hard to help us all find answers.
In this blog entry, I will share a few of the key takeaways that I learned at the event. The slides from the event are available for purchase here for a very reasonable $40. The DVDs (Friday's sessions) and CDs of the presentations can be obtained from ZenWorks Productions. Thus, I am not going to attempt to repeat information that is available elsewhere, but I will focus on some of the key things that caught my attention.
�The 2011 ILADS event will be in Toronto, Canada - October 28-30, 2011 �Dr. Richard Horowitz proposed that Chronic Lyme is really MCIDS - Multiple Chronic Infectious Disease Syndrome �Biofilm treatment may be with EDTA or a Banderol/Samento combination. There may be a strong antigen release with biofilm treatment which may make it a good candidate for pulsed therapy �Dr. Steve Harris mentioned that yeast may cannibalize dying Borrelia and that yeast is not always the result of antibiotic therapy alone. He suggested up to 100 billion probiotic organisms daily. In terms of diet, he said, "If it's white, it ain't right" �Minocycline may have longer toxic effects than doxycycline but has better CNS penetration. Mino also has less sun sensitivity than doxy. That said, Dr. Joe Burrascano commented that the effectiveness of minocycline may be regional as he never observed it working well in his patients �Tygacil can be difficult to tolerate but has emerged as an excellent tool for some patients in the treatment of chronic infections �Dr. Joe Burrascano shared: ◦New pathogens will likely continue to be discovered such as XMRV / HGRV ◦Biofilm-busting treatments are just the beginning of what will come ◦When Borrelia is the only infection involved, the onset of symptoms is slow. There are no sweats. A 4-week symptom cycle is observed. There is often joint involvement, swelling, and stiffness. Temperature may be high in the late afternoon but low in the morning. Headache is often in the back of the head ◦CD57 suppression may occur in XMRV as well as in Borrelia. (Editor's Note: There was also talk at this event of Chlamydia pneumoniae causing CD57 depression as well as a discussion of CD57 going down when one is in the midst of a Herxheimer or die-off reaction. Thus, it seems that CD57 may not be as specific for Borrelia as may have been previously believed. That said, I do still believe it is an important marker to help provide additional insight as to whether or not someone may have Lyme disease and when they may be able to stop antibiotic therapy with a lower possibility of relapse.) ◦If a relapse occurs within 3-4 weeks after stopping a therapy, this may be Borrelia. Anything sooner would more likely indicate a co-infection ◦Bartonella may result in light sweats, CNS/Brain involvement, anxiety/rage, sore soles of feet in AM, 99.5 temperature in AM and normal in afternoon, lymph gland involvement, elevated VEGF, seizures, feeling rev'd up, gastrointestinal complaints, and nodules under the skin ◦Babesia may result in abrupt onset of symptoms, symptom cycles of every 3-7 days, fatigue, global headaches, dry cough, air hunger, and coagulation cascade irregularities being triggered. When Lyme disease is really bad, Babesia is likely a co-factor ◦Ehrlichia may result in abrupt onset of symptoms, muscle involvement, high fevers, low WBC and platelet counts ◦Rocky Mountain Spotted Fever (RMSF) results in a spotted rash including on the hands and soles of the feet ◦Mycoplasma does not currently have any good tests available. It is a common lab contaminant which makes testing difficult. Leads to neuropathy and fatigue. Infects the mitochondria of the cells and leads to the sickest and most chronic patients. He mentioned that building the immune system and getting rid of Lyme is often the focus here rather than going after Mycoplasma specifically ◦C6 ELISA is generally never positive in chronic Lyme and not useful as a result ◦Spinal taps are done to look for OTHER things; not to look for Lyme ◦Stonybrook has a good Western Blot but only reports all bands when requested; otherwise reports CDC bands which exclude the most important 31 and 34 bands ◦Flagyl must be taken for 14-30 days minimum to have any impact on Borrelia ◦If someone has chronic Lyme but does not do IV therapy, the chances of them recovering are small ◦Never taper the dose of antibiotics. When it is time to stop, stop. Tapering off may create resistant organisms ◦Exercise is a key to recovery ◦In chronic Lyme patients, 100% may be XMRV / HGRV positive ◦Kefir is an excellent source of probiotics �There was some discussion from Dr. Fry's talk (which I was unable to attend) that decreasing lipid intake may be helpful. I'm hoping to understand this more from the audio CDs of the talk. There was also discussion that Magnesium stearate can increase the amount of biofilm �Dr. Richard Horowitz mentioned: ◦He has had success with IV Glutathione for detoxification - helps with fatigue and depression and improvement is often observed within minutes ◦Almost every Lyme patient is testing positive for heavy metal toxicity ◦40% have adrenal dysfunction ◦The Western Blot from IGeneX has both B31 and 297 Borrelia strains where many other labs use only B31 which makes their Western Blots more likely to result in a false negative ◦Mepron and Malarone dosages may need to be increased to higher dosages than previously used. Mepron - 2 teaspoons twice a day with Septra or Bactrim may be useful for Babesia. Malarone may require 4 tablets daily with artemisia. Coartem (Riamet) can be done as a 3 day pulse per month and has been very helpful for some patients ◦Bartonella can have significant eye-related symptoms ◦Gentamicin is bacteroicidal ◦Bartonella infection has been found in newborn children resulting from pregnancy ◦Probenecid may help reduce Quinolinic acid - a toxin produced by Borrelia ◦200 billion probiotic organisms daily is often necessary �Paul Ewald suggested that microbes that cannot transmit frequently favor persistence in the body (i.e. sexually transmitted microbes do not have the same opportunity to transmit vs. airborne microbes which much more easily transmit from one person to another). He lectured on the connection between many chronic illnesses and chronic infections �Dr. Ray Stricker shared the following on the topic of testing: ◦Band 39 is the most specific for Borrelia ◦IgM Western Blot has more possibility of a false positive result than the IgG Western Blot ◦CD57 may be affected by Borrelia, Chlamydia pneumoniae, and Tuberculosis ◦CD57 will generally go down within 3 months of infection ◦According to Dr. Stricker, the test is valid for children (though responses may be exaggerated) though Dr. Jones shared that he did not find it to be very helpful with children ◦CD57 may go down with Herxheimer reactions. Inflammation may result in a drop in CD57 ◦Elevated CD57 such as 400 may occur. HIV patients do exist with high CD4 counts as a corollary though the CD4 cells may not work well or function properly. Thus, CD57 can tell us the quantity of the cells but the issue may be the quality or whether or not the cells can function optimally. (Another practitioner suggested that many cases of high CD57 show drops in CD57 results once treatment begins) ◦Stem cell therapy is not known to affect CD57 counts though another practitioner commented that she had seen an initial drop in CD57 after stem cell therapy with continued ongoing increases as time passed after stem cell therapy ◦C4a is an inflammation marker. It generally correlates with symptom presentation ◦C3a is an autoimmune marker ◦C4a can be due to infection �Dr. Norton Fishman shared information on the immune system and cytokines: ◦Noted that Lyme is a "politically incorrect illness" ◦Dr. Herxheimer died in a Nazi concentration camp ◦One of his diagnostic criteria for Lyme patients is a person that feels that each time they take antibiotics, they get sick. Generally, this is not an allergic reaction, but a die-off reaction. ◦There is an exacerbation of inflammation with a herx reaction. Some herxes are more mild and may suggest that you are on a good path much like a speed bump. However, when a speed bump in the road becomes a guardrail, you have a problem ◦Opportunistic infections may not do much while the "police are are on the street" or the immune system is on alert. Some Lyme patients don't get colds or flu. When treatment begins, opportunists may emerge ◦When a herx is too much, pulling back on the therapeutic throttle is often appropriate. There is no place for heroes in this disease. Herxes can be terribly damaging ◦Some agents will slow the inflammatory reaction such as: Willow Bark, Omega-3, zinc (many are zinc deficient), turmeric, ginger, licorice root. Many of these quiet down NFK-�. Probiotics help dampen the cytokine response in the gut. His favorite is Vitamin D3 ◦Vitamin D3 is turned by liver into D,25 which is converted to D1,25. Macrophages increase Vitamin D1,25 production when activated. Many Lyme patients have high D1,25 and low D,25 which indicates they have infection. D1,25 downregulates the pro-inflammatory cascade and makes peptide antibiotics. People with higher Vitamin D levels have fewer infections such as TB and flu ◦Many people experience a "herx" when they get "Lyme 2" on top of "Lyme 1". Immune memory of "Lyme 1" explodes when "Lyme 2" is introduced. The response is much more exaggerated with the second Lyme infection than the first. Once new antigens are introduced, the patient may become much sicker ◦People with Lyme are mosquito and tick-attractive; likely related to a pheromone �Eva Sapi, PhD talked about the many exciting projects that her team is doing: ◦They are looking for XMRV in ticks to see if the retrovirus may be transmitted by tick exposure ◦They did some excellent research showing Samento + Banderol + Serrapeptase (all from NutraMedix) had very significant biofilm eliminating effects �Dr. Joe Brewer spoke on the topic of XMRV: ◦Endogenous retroviruses are viruses that we all have. These cannot complete replication and are not infectious. They are something that we inherit in our DNA ◦Exogenous retroviruses are viruses that can replicate outside of the cell and are infectious ◦Xenotropic (as in XMRV) - the virus does not complete its life-cycle in the mouse but does in humans ◦XMRV is a much simpler virus than HIV ◦XMRV does incorporate itself into our DNA ◦XMRV uses a receptor X-pr1 that is present on all human cells and thus can infect all human cells ◦We now have both X-MLV (xenotropic mouse leukemia virus) and P-MLV (polytropic) forms of the virus ◦In CFS, both X and P have been observed ◦In HIV, HAART (Highly Active Antiretroviral Therapy) therapy is a three-drug (generally) combination used for treatment of HIV ◦In one autism study, all mothers tested were XMRV positive and many of them expressed symptoms of Chronic Fatigue Syndrome or Fibromyalgia ◦In a small sample of MS (4), Parkinson's (1), and ALS (1) patients, 100% of those tested were positive for XMRV ◦In chronic Lyme disease, over 90% of those tested were positive for XMRV ◦How XMRV is transmitted is still not fully understood but we do have HIV as a model. Blood transfusion, sexual transmission, and needles may be mechanisms. They are not seeing rampant CFS in gay men or prostitutes so there must be other mechanisms. One German study showed XMRV was found in saliva. There is little doubt that in-utero and breast milk transmission is possible. One unknown is whether or not ticks may also have XMRV and could they transmit XMRV to humans? That work is being done by Eva Sapi, PhD and her team ◦Current possible treatment options for XMRV include: Zidovudine (Retrovir), Tenofovir (Viread), and Isentress (Raltegravir). All two drug combinations worked better than any single drug ◦There is not a perfect testing method for XMRV ◦XMRV often gets worse at the onset of treatment and treatment has been a mixed bag thus far. Tests are needed to monitor treatment progress. The P-variant may require entirely different anti-retroviral medications ◦Known inducers of XMRV/HGRV activity include: NFK-�, possibly treating Lyme with antibiotics leading to a strong herx which results in inflammation could increase the replication of XMRV, glucocorticoids activate viruses (cortisol/stress), and androgenic hormones. I was struck by the comment that a Herx reaction from Lyme treatment may actually increase the activity of XMRV �During Q&A, Dr. Fishman acknowledged the politics involved in Lyme disease. He suggested that XMRV may be the pathway that we should pursue in order to benefit ourselves �Dr. Richard Horowitz did a lecture on integrative treatment of Lyme disease which was one of my favorite lectures. I would highly recommend getting the audio recording of his session as it was one of the best. I don't begin to touch on the wealth of information that he shared over this two+ hour talk. He shared the following (and much more): ◦He suggested we need to broaden our view of Lyme disease and look at all of the other factors involved. He suggested that it is like having 14 nails in your foot - you need to pull out all 14 ◦In 5,000-6,000 patients tested, everyone is "loaded" with heavy metals such as mercury and lead ◦Most "sickness behavior" (i.e. what makes us feel sick; symptoms) is the cytokines. Glutathione reduces this in minutes in many patients ◦1/3 of his patients have had a severe history of abuse; these emotional traumas need to be dealt with in order to recover. These are the most resistant patients. When the trauma is cleared, the patients improve. He mentioned a technique called "The Journey" (http://www.thejourney.com) ◦40% of patients have adrenal dysfunction which must be addressed; patients will not respond to antibiotic treatment without adrenal support ◦70% of patients have peripheral neuropathy ◦Low Dose Naltrexone (LDN) can be very helpful in lowering cytokines and thus relieving many symptoms associated with the disease. Always remember the cytokines. LDN can be a big help here ◦Bicillin is one of the best antibiotic options at 1.2 million units 2-4 times per week ◦Biaxin XR is better than Biaxin ◦Grapefruit Seed Extract can be an effective cyst buster ◦When using Flagyl, supplemental B-vitamins may be helpful to avoid peripheral neuropathy ◦A combination such as Doxycycline or Minocycline with a macrolide and Plaquenil may be a good option. Plaquenil alkalinizes the intracellular compartment ◦You cannot combine a macrolide with a quinolone ◦Magnesium and Alpha-lipoic acid taken away from a quinolone may be helpful in reducing the risk of tendon damage ◦Factiv is a newer drug sometimes used for Bartonella that is generally tolerated well ◦Mepron resistance is becoming a problem and 1 teaspoon twice daily is no longer working ◦The goal is not to "cure" or "eradicate" but to lower the load so that the immune system can manage. We will not eliminate all of these organisms entirely from our bodies ◦Mepron plus Sulfa/Bactrim; or Malarone (up to 4 tablets daily) plus Artemesia may be useful for Babesia. No CoQ10 can be used with Mepron or Malarone ◦Coartem (Riamet) is a new option in the US for Babesia. It is a 3-day course. No macrolides, no QT-interval impacting drugs, no Plaquenil, no Mepron/Malarone for a period before, during, and after the Coartem; works well, but the Babesia will still come back ◦Babesiosis is extremely difficult to "cure" (i.e. fully eradicate) ◦Olive leaf is a good option for viruses ◦For Candida, oregano, garlic, caprylic acid, Pau D'Arco, and berberine may be useful ◦Autoimmunity is likely driven by intracellular bugs such as Mycoplasma ◦Alpha-lipoic acid pulls metals and regenerates glutathione ◦Quinolinic acid (QUIN) is a major neurotoxin in Lyme disease ◦For environmental toxins, far infrared sauna can be a good option ◦Up to 25% of patients with MCIDS (Multiple Chronic Infectious Disease Syndrome) improve on a metal detoxification program. This may also be related to autoimmunity ◦Detoxamin or oral DMSA may be used for heavy metal detoxification ◦Xymogen MedCaps DPO (dual-phase optimizer) can be a useful detoxification support option ◦Environmental chemicals can be tested for with Accu-Chem / MetaMetrix ◦Glutathione can be used for quinolinic acid or for cytokines ◦On the Cowden Protocol: Glutathione works better than Burbur or Parsley in his experience and he did not find the protocol to have a strong enough effect on Babesia. Otherwise though, Dr. Horowitz reports very positive results with the Cowden Protocol ◦Take-home message: DETOXIFY YOUR LYME PATIENTS! ◦It does NOT matter what antibiotic you give people, they will NOT get better without detoxification ◦For Herxheimer reactions: 2 Alka-Selzer Gold (no aluminum) in 8 ounces of water with lemon or lime followed by 6-8 capsules of glutathione or 1500 mg or oral liposomal glutathione. 70% will feel better in hours ◦On the topic of water: Dilution is the solution to pollution. This suggests that in order to help our bodies detoxify, we must drink more water ◦His goal of treatment is to get off antibiotics as soon as possible and that is why he is so interested in the various herbal protocols such as Cowden and Buhner but he believes that it is critical for scientific studies to be done in these areas ILADS 2010 was a great event full of great people looking for answers. I can't wait for the 2011 event!
Posted by seekhelp (Member # 15067) on :
This one line is enough to depress me coming from the Pope of Lyme treatment. Not good news for me.
�Dr. Joe Burrascano shared:
◦If someone has chronic Lyme but does not do IV therapy, the chances of them recovering are small
Posted by bcb1200 (Member # 25745) on :
Sorry to gripe, but this is about the 3rd time someone posted these.
Posted by keltyl (Member # 14050) on :
The polite thing to do would be to just skip over the post.
I'm not able to read alot, and sometimes am not on here much, so I don't read most of the posts. I did read this one, and found it very intersting.
Posted by Hambone (Member # 29535) on :
quote:Originally posted by seekhelp: This one line is enough to depress me coming from the Pope of Lyme treatment. Not good news for me.
�Dr. Joe Burrascano shared:
◦If someone has chronic Lyme but does not do IV therapy, the chances of them recovering are small
This depresses me, too. IV's are not possible.
Posted by tick battler (Member # 21113) on :
thanks for posting.
tickbattler
Posted by seekhelp (Member # 15067) on :
Not for me either. I can't afford it and can't get it offered anyways.
quote:Originally posted by Hambone:
quote:Originally posted by seekhelp: This one line is enough to depress me coming from the Pope of Lyme treatment. Not good news for me.
�Dr. Joe Burrascano shared:
◦If someone has chronic Lyme but does not do IV therapy, the chances of them recovering are small
This depresses me, too. IV's are not possible.
Posted by Stefan (Member # 19150) on :
sorry I had no intention to make people feel sad .
I found it today and thought it might be interesting for you
Posted by tick battler (Member # 21113) on :
Well, I don't agree about the IV thing...many have gotten well without IV abx!!!!!
tickbattler
Posted by Stefan (Member # 19150) on :
The guy who took the notes - is also a member here . he is doing great work for us all!!!!!
Very good job - thank you!!!!
his member no is
7686
Posted by Blackstone (Member # 9453) on :
Over the past decade I've followed this disease, I've noticed there seem to be surges in ideas that roughly approximate "If you don't do X, in Y way, you will never get better". More often than not, this has been incorrect. There are people who are "cured" (Report a year or more, without relapses or flareups, without any maintenance meds beyond the baseline) that post here who have done IVs, some who never had IVs, others who claim that their breakthroughs came from something like herbals or rife etc...
Some of what is listed is seemingly contradictory, like the whole "We don't have viable tests for XMRV" yet "100% of people tested have it in X group" doesn't seem to mesh. There are similar issues as well in what is stated - If it was really this easy to conclusively demonstrate these illnesses then there shouldn't be the controversy we have now - it should be a scientific and medical proof!
Thank you for documenting this for the community. I have around 25% of the reports, but I'll have to look into the rest in time
Posted by keltyl (Member # 14050) on :
I did IV Rocephin for 9 1/2 months, felt a little better while treating, but went back to square 1 after stopping.
No matter what the med or herb, everyone is different. Some improve easier than others and at this point, I feel I will never improve. Either the missing link has to be found, or there are just too many problems to overcome.
Posted by tick battler (Member # 21113) on :
keltyl - I believe there is a missing link for everyone...we just have to find it. Have you explored KPU/HPU or EMF's or parasites or Dr. K's protocols? Those are the links I'm currently exploring. Something is bound to work. The HPU thing sounds promising but we shall see.
tickbattler
Posted by keltyl (Member # 14050) on :
I have hounded my LD for almost 2 yrs to be tested for KPU. In fact, had a phone consult on Tues and brought it up again. What the h***, what hurt would it do just to be tested.
Have also been on the parasite thing for that long too. The most I got out of it was 5 days of Alinia, big deal.
Posted by Camp Other (Member # 29797) on :
Blackstone, thanks for your comment. That's pretty close to what I was going to say in response to the conference notes.
I think that one really important question to ask about any of these comments or protocols is "Why?". If a doctor says, "Without IV abx, there is little hope of recovery", ask them and others "Why?". At least get their reasoning behind the statement, and then see if you can learn more from them and research. If they can't say why, or give a vague answer, then I think it's perfectly reasonable to hold your own doubts about it.