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Everything posted by red

  1. I too am sorry you've been thru so much with so many doctors. But I have to respectfully disagree with this definition of what makes someone an LLMD. It's not just testing, it's also understanding the very complex and very individual needs that come up during treatment. This, in my book, includes a wide variety of abx, detox, considering yeast and metals and biofilms and cyst busting and nutrition and toxins and virals, etc. I give Dr B credit for testing, which is more than many doctors are willing to do. But his experience in treating lyme is not that vast and his focus is on Pandas. He certainly doesn't advise patients on or test for any of these other aspects and sometimes these are equally or more important in recovery. I respect him for getting some patients started on treatment while they wait to get in with an LLMD but based only on my own experience, I would not suggest someone with possible lyme or co-infections see Dr B. for long term treatment. Use him for his specialty. He himself will tell you that that specialty is not lyme. Not trying to bash him in any way. But didn't want this thread being stumbled upon years from now and not having a differing opinion out there for someone who's searching for options. We may have to agree to disagree on this one. I appreciate the thought about being through so many docs. I do not think that is a big deal but it is a big pain. I have been in medicine 37 years and know when to quit and move on. I think only 10% of western medicine is any good. Most western docs practice in a box and this includes some so called LLMDs. If Dr. B is collaborating with another doctor on his PANDAS + Lyme patients then that makes for very good medicine. And it also makes Dr. B literate in the literal sense. A LLMD does not have to be the treating doctor. They can just be the diagnosing doctor and the refer to someone with the expertise. This is really how medicine is supposed to work. The problem comes when a person sees a doc and the doc does not see the person/symptoms/disease. THink of how many people go through this with Lyme/Bart etc./PANDAS and or mold. I sure went through it with mold. I was treated mostly on symptoms by LLMDs. And the symptoms of Lyme are very similar to mold. So LLMDs need to become mold literate. As for bart, these symptoms are in a whole other universe (thank goodness for the DNA test). I think misdiagnosis is by far a much greater problem than your concern that someone will stumble on this thread years from now and come away getting the wrong idea. In fact it is with information from a thread like this that people get informed. I have seen way to much bad medicine in my professional life and I have experienced it as a health care consumer. Your book may indeed provide some good information to the public but for those seeking information the first place they go is forums like this. To argue a point, if a person with possible Lyme called Dr. B's office and it was not about PANDAS or allergies his office would most likely just refer them on to a LLMD/treating MD like Dr. Jones. I consider that good medicine. For the vast majority of tick/Lyme etc./PANDAS or mold people the first person they see is their primary care doc. And from there it is an up hill battle. Red.
  2. As a certified orthotist with 37 years experience and one who has a speciality in foot biomechanics and treatment of all foot pathologies and also a person with bartonella I have a unique perspective on foot pain. Whereas your Orthopedist may be correct that your DD (does that mean daughter?) has flat feet, how her pain manifests itself may tell you more about wether it is bart or mechanical (although it could be both). When my bart is flaring (exp. during herxs) the pain is almost indescribable as well as unbearable. And it sure is not like plantar fasciitis. But usually the rest of my body is hurting also. If she is experiencing muscle pain elsewhere in the body as well as her feet then you are looking at bart. I can guarantee you that if I went to an orthopedist or podiatrist they would tell me my foot pain is a result of extremely high arches. I think you mentioned knee pain and in a flat footed young person knee pain can be quite common. So good orthotics might be good for her even if she has bart. As for me I not only have soft tissue pain but my bones ache something fierce when bart is flared. Actually the bones "seal" that is quit growing in a female when the hormonal changes occur which is especially easy to note with a female. I see plenty of 15/16 year old young women/girls with flat feet and knee pain. Their bones are sealed and quit growing but they still have pain due to very flexible feet. Red
  3. I have a window unit in my shop. I regularly soak the floor of the unit with hydrogen peroxide. I then also spray the internal blower and internal housing. I also spray the fins. Now I do it after the sun is down as sunlight breaks down H2O2 rapidly (hence the brown containers it comes in). H2O2 directly breaks down mold into its constituent chemicals. What that essentially means is that it not only kills the mold but then it breaks down the toxic spore which is no longer toxic. When I pour the H2O2 into the pan of the A/C unit you can hear it sizzling as it breaks down organic matter. You should wear a paper mask so you do not inhale the spray. I often wash the pan out with soapy water after I let the H2O2 do its thing. I then run the fan on the unit until dry. Red
  4. Very interesting alternative medicine practice in northern MD http://www.twofrogscenter.com/index.html Greg Lee would be the guy to see. He contributes a lot to this good news letter http://goodbyelyme.com/ Lots to learn on both websites. An excellent LLMD and PANDAS doc in Conn. He treats PANDAS, Lyme etc. and immune deficiency. Denis A. Bouboulis, M.D Dr. B. is not an LLMD (he is a PANDAS doc, though). He refers to Dr. J, and they collaborate together. http://www.advanced-allergy.com/ Any doctor who knows enough to get the right tests for Lyme, in this case Dr. Bouboulis sends his Lyme tests to Stony Brook and then knows enough to collaborate with the treating MD is in my book Lyme Literate. I assume the Dr. J you are talking about is Dr. Jones and not Dr. Jemsek. It is rather hard for me to understand what doctors everybody is talking about when all that is used is the first letter of the last name. My story is quick and dirty. In 2004 I was misdiagnosed with Lyme and babesia by a LLMD, Dr. J. Now I say that makes him Lyme illiterate because he misdiagnosed me. He treated me for a while and I then consulted with a Dr. C who said is was possible I had Lyme. I then went to a very well known LLMD Dr. L who also misdiagnosed and inappropriately mistreated me with antibiotics. Then in late 2006 I saw a LLMD, Dr. S who was also mold literate who did a much more detailed work up than the previous LLMDs and found it was mold. I cleaned my house and body and recovered. Then I got sick during my 18 month treatment for prostate cancer and never recovered my energy and had continuous bouts with muscle pain and fatigue well after I recovered from said prostate treatment. Last year I saw a LLMD Dr. F who diagnosed me with Lyme based solely on a 41K+. Wrong but he did steer me in the direction of bartonella based on a Fry Lab smear. Now Fry is a questionable lab to me so onward. I was not about to be treated again for Lyme that I did not have. So I then went to see a giant money sucking machine Dr. M who did the Galaxy Diagnostic PCR/DNA profile that proved I really had bart. But I was also broke from Dr. M. So luckily I found a different Dr. F locally who is LLMD and am now in antibiotic treatment for this very dreaded disease. I must say the herxing can really hit the upper end of the Richter Scale. Phew. (I should add that I saw a Dr. H at a very prestigious Medical School who outright rejected the Galaxy test as a lab error. He gave me the usual and customary bart test for only 2 variants while there are 26. He also said I did not have bart and he never in his career saw a "chronic bart" case. "They are always self limiting". WOW Red
  5. Very interesting alternative medicine practice in northern MD http://www.twofrogscenter.com/index.html Greg Lee would be the guy to see. He contributes a lot to this good news letter http://goodbyelyme.com/ Lots to learn on both websites. An excellent LLMD and PANDAS doc in Conn. He treats PANDAS, Lyme etc. and immune deficiency. Denis A. Bouboulis, M.D http://www.advanced-allergy.com/
  6. *Well, Cowden does have the famous Dr. Eva Sapi study, where she used Samento and Banderal in vitro and found it killed cyst forms, spirochetes. But one could argue in vitro is different than the human body. Hard to know, we all respond somewhat differently. Are you a Buhner fan? I did purchase some Cowden Samento (cat's claw) and their Pinella (brain cleanse, so to speak, can be taken with the Samento) for myself, as I feel like I've plateaued on my own Lyme treatment of 4 months of Bicillin injections, and Tindamax 2 weeks on/2 weeks off. It will be interesting to 'see.' Been on a lot of oral antibiotics for Lyme itself, don't want to go back to them. No sarcasm intended but gasoline works in vitro also. Everything changes when you put it in the body. The are scores if not hundreds of alternative products with in vitro claims. I am not a fan of anything. Even if something works on one person it may not work on another person. Even with western pharmaceuticals that use in vivo testing it does results are not universal. Red
  7. The problem with the Cowden as well as the Zhang protocols is there is no science. What both of them have done is to take traditional indigenous medicine and make pharmaceutical grade products out of them. In the end you have nothing like what you began with. And then there is no testing. One product may actually be negating another product. Many mainstream pharmaceutical drugs are made from naturally occurring organic compounds. Rifampin was originally found in a soil sample in a pine forest on the French Rivera. Rifampin causing many drug interactions through it metabolic process in the liver. Many drugs are rendered useless by taking rifampin. So when I look at the Cowden and Zhang protocols I look at a hogdepodge of products put together by one person making anecdotal claims about its effectiveness not to mention also making a lot of money off of said products. Zhang is not using TCM (Traditional Chinese Medicine). He has taken herbs out of the bag, refined them and put them in a capsule. TCM has a 5000 years history. AFter seeing your OMD you walk out with a bag of herbs that you boil and drink. Red
  8. Here is a very well written article on clays in biotoxin removal. Bentonite, Bandaids, and Borborygmi http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2895274/?tool=pubmed Red
  9. I did the tripe draw. The risk of missing bart is not worth doing a single draw. I even had my dog tested to make sure he was not the source of my bart. I was lucky as my Vet did not mark up the cost of the test. They have been testing animals for years at NCSU vet school. This test has only become available for humans since last fall. red- were you off antibiotics when tested? I just read on their order form that they recommend no abx 2 weeks prior to sample. NO I was not on antibiotics when they did the test. It would be a wasted test if you are on antibiotics/ Red.
  10. Here is an interesting article comparing probiotics to nystatin Treatment with probiotics in experimental oral colonization by Candida albicans in murine model (DBA/2). http://www.ncbi.nlm.nih.gov/pubmed/22059932 Seems to me they can be used close together. I wonder if there might be a synergistic effect? Red
  11. To take this a step further in understanding the role of rifampin you have to look at the CYP3A4 cytochrome in the liver. Rifampin is an "inducer" of CYP3A4. Which means as rifampin is metabolized it causes an increase of CYP3A4. Then along comes a drug that needs CYP3A4 to be metabolized. But there is so much CYP3A4 as a result of induction by rifampin that the next drug gets super metabolized in the liver and most of it never makes it into the bloodstream. It is sort of like using O2 on a fire. Red
  12. Here is a short read on the subject. http://www.healthcentersofamerica.com/information.cfm?id=144
  13. You ask how long it takes. Everybody is different as to how long it takes to work. Are you sure the bright rash all over his torso is not an allergic reaction?? I barely can tolerate pediatric doses of rifampin. I think your doctor is not aware of that using rifampin results in up to 90% reduction in clarithromycin in the blood stream. Rifampin is a very powerful drug that due to its metabolization prevents many other drugs effectiveness. See Clinical pharmacokinetics of clarithromycin http://www.ncbi.nlm.nih.gov/pubmed/10589373 Concentration of clarithromycin and 14-R-hydroxy-clarithromycin in plasma of patients with Mycobacterium avium complex infection, before and after the addition of rifampicin. http://www.ncbi.nlm.nih.gov/pubmed/15116577 Reduced serum levels of clarithromycin in patients treated with multidrug regimens including rifampin or rifabutin for Mycobacterium avium-M. intracellulare infection. http://www.ncbi.nlm.nih.gov/pubmed/7876634 Red
  14. How does one determine the level of heavy metals? As for detoxamin suppositories I would be very cautious using metal chelators. These chelators also remove many necessary minerals from our blood. I cannot imagine taking that kind of risk unless I was having a full blood analysis. Red
  15. I agree with the below post: what would you do differently as you are already treating for most tick vectors. No sarcasm intended here, but I literally have received over 1000 tick bites in the last 20 years (if you think that is hard to believe just imagine walking into a nest of nymphs that are the sized of pin heads and not realizing it). That has happened to both me and my wife: both in our garden as well as in the woods. And it was only 1 tick out of that 1000 that made me sick. We have ticks year around where I live down on a river. Red
  16. thanks for the mention of detox. I have discussed it with my LLMD (Lyme+ herself). There really is not much out there proven about bart detox. I've even tried CSM which worked wonders for mold many years ago. It does not touch bart. But even if it worked it is hard to get it in around all the antibiotics and probiotics. My LLMD says I am having the most pain of any her bart patients. I have to persevere. At least I have a functioning frontal lobe unlike so many children who haven't a clue as to why they feel the way they feel. My niece is just now going through PANDAS with her youngest and it is a nightmare. She is on her 2nd MD. She leaves for Conn. tomorrow to see him Monday.
  17. I am 64 and am being treated for bartonella (diagnosed by Galaxy Diagnostics). I have been tested for virtually everything else so it is only bart. I can tell you the pain from herxing can be overwhelming. Everything can hurt. Bone pain (to hard to describe but the bones just hurt like ######, muscle pain (burning in the muscle tissue) and tendon pain like your have severe tendonitis and it comes on all at once. I cannot imagine a child going through this. I hit myself hard with vicodin and xanax to suppress my CNS and the pain still breaks through. When I am herxing it seems worse at night but then it may be just feel worse because there are no distractions. The other night I slept the whole night in pain. If it was not for the drugs knocking me out I would not have slept. You cannot give kids those kinds of drugs so my heart goes out to your child. I sometimes skip my evening meds just to give myself a break if I have been herxing for more than a day. I also have to count how much vicodin and xanax I am taking. I sometimes just sit and wait and pray for to get through the next hour so I can get some relief. Red
  18. Thank you...this explains a lot as to why I keep insisting that the bathroom smells moldy. I'm replacing the floor and cabinet in one bathroom, because it had a leak. BTW...we had engineered wood in the bathroom, and although it looked very nice, it got the water underneath it's top layers, and you can only imagine how bad it got. Now, I have a reason to replace the flooring in the other bathrooms. Instead of pulling up the tile (possibly releasing mold into the house,) does it work if I just cover it with a concrete style leveler (I don't remember what it's called, but it comes in a can/bucket, you spread it onto the floor, and then let it dry, then cover that with tile? It is not just the spore that is toxic. The mold smell is a VOC and mold VOCs are toxic. So if you cover mold and it continues to off gas VOCs then you are still inhaling toxins. There is also the issue of what is happening on the other side of the floor you are covering. It is open to crawl space or continuous with subfloor the allows off gassing to move into another area of the house. Moldy material can be removed safely if done with due diligence.
  19. Here is a good overview of Dr. Ritchie Shoemaker's protocol on mold/biotoxins and diagnosis. It appears on Mercola's site today. http://articles.mercola.com/sites/articles/archive/2012/07/22/mold-and-other-chronic-diseases.aspx?e_cid=20120722_SNL_Art_1 Red
  20. I use a portable unit in the crawl space. It is hooked up directly to a hose that drains outside. I have it set a 50% so it comes on and off automatically. My A/C in the summer keeps the rest of house at or below 50%. In fact if an A/C unit is not keeping the house at or below 50% it is probably to big a unit and not running long enough to dehumidify the house. Of course Fl has different issue in the winter but if you are running at 90% in house you are in trouble as far with mold. I sure would be looking harder at doing something whole house. I would talk to different A/C companies.
  21. 8 years ago I was misdiagnosed with Lyme disease and treated for it from June 2004 until Dec. 2006 ( I now have bartonella but that is a whole other story). Until I found my way to a mold literate doc did I find out my severe illness was mold in my house. Mold is both very easy to treat but also very tedious and time consuming. You have to first get the source of mold killed. You then have to clean your house and everything in it. We threw away a lot. Everything that cannot be put through a washing machine with soap and water gets thrown out or in the case of some furniture stripped to the base and new foam and recovered. Everything has to be done with methodical care to prevent cross contamination of the house and its contents. You then must be sure that mold does not reappear in your house/life. In our case we spent some retirement $ and gutted our house to the core and rebuilt it. Everything put back was VOC free. All insulation and sheet rock was mold proof and before restoring the house the whole interior framing was sprayed with a silver based non-toxic paint to prevent mold from growing on the wood. Finally the house, basement and crawl space must be kept and no more than 50% humidity. The crawl space should also be sealed completely from preventing water vapor from coming into the house. Red
  22. Are you using Galaxy Diagnostics for your PCR tests? As for Rifampin it can cause "herx" like symptoms that is not a herx. Rifampin is one of the most difficult antibiotics to tolerate no matter what you are using it for.
  23. Biofilms are extremely difficult to eradicate as this article in Science Daily points out http://www.sciencedaily.com/releases/2012/07/120712144747.htm "Bacteria are not loners". "While single bacteria may be susceptible to antibiotics, the films can be 1,000 times more resistant and most can only be removed surgically".
  24. I am on azithro and augmentin (+pulsing low doses of rifampin) for bart. Adding septra should be done with caution as septra can have significant side effects depending on the individual's metabolism. You might want to consider starting pediatric doses. I found septra very hard to tolerate at standard adult does
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