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red

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Posts posted by red

  1. This is why we have a problem with abx overuse and resistance to bacteria. Dig the head of the tick out before it causes a localized infection. It is INSANITY to think that every single tick bite immediately be treated with abx. The average person in my area of the rural countryside gets a 25-100 tick bites a year. Literally millions of people get many many millions of tick bites a year and nothing happens. I stated abx (200mg twice a day of doxy X 4 weeks) after a tick bite with an expanding rash and still got chronic batonella from it because doxy does not kill bart. Really one tick bite, even in an endemic area does not make for a trip to the doctor.

  2. C4a is NOT mold dependent. C4A is just an indication of inflammation and be a result of many sources. Shoemaker is adamant that only Quest perform C4a because they send the test out to "The performance characterisitcs of this test have been validated by National Jewish Clinical Reference Laboratories. It has not been cleared or approved the the U.S. Food and Drug Administration. The results are not intended to be used as the sole means for clinical diagnosis or patient management decisions.


    This laboratory is certified under the Clinical Laboratory Improvement Amendments of 1988 (CLIA-88) as qualified to perform high complexity clinical laboratory testing.

    Performing Laboratory National Jewish Center Imm Med 1400 Jackson Street Denver, CO 80206-2761

    Doing an in house ERMI is the only real way to test for mold.

    You can spot test but mold can be behind the walls and therefore hidden from spot testing. I myself have used Mycometrics for the last decade.

    http://www.mycometrics.com

    Mold is processed by the liver and not by the kidneys. Shoemaker says that there is no direct test for mold in the blood. Mold spores are fat soluble hence they settle in the brain tissue which has a high amount of fat. Mold is found in cholesterol which is processe in the liver. Shoemaker uses cholestyramine because it bind directly to bile. The bile has mold and cholesterol in in. Through the bile binding process the bile is extracted and the eliminated through bowel moments. Once bound up by CSM mold cannot escape back into the blood stream. New clean bile is produced by the liver and the process starts all over ever time you take CSM. I fail to see how a urine test could show mold spores. And if the person is excreting mold via urine that would be a good thing. The reason some of us get sick from mold and others do not is because we cannot process the spores as a foreign toxin: hence it builds up in our blood stream making us sick. Shoemaker has identified about 8 HLA types that are susceptible. I strongly suggest taking the VCS, visual contrast sensitivity test. It can be found on Shoemaker's site. There are no false positives for this test. If it shows neurotoxins then you have neurotoxins. The are some outliers who have mold but they have a normal VCS test.

    If I read it correctly OATS tests for yeast which is different than environmental sick building syndrome mold. SBS mold it inhaled and ingested through our food as the spores settle out inside the house.

    Common sources of food mold is peanuts, cheeses and some fruits. Most food sources like fruits and cheese you can see the mold. Nuts are harder to find because the source comes from bad storages practices before the product comes to market.

  3. Prednisone is inactive until it passes through the liver and is activated by enzymes in the liver. Prednisone convert to the active metabolite prednisolone. Giving prednisolone ensures that if the liver is inefficient the body still received the proper dosage.

  4. Dear Rowingmom,

    You seemed to have both misunderstood my posts and misrepresented my position as a result.

    You accuse me "If you think that the presence of ephedra compounds in the sida species is unacknowledged by Buhner, that you are outing his protocols, you are very wrong".

    When in fact I said "You should also be aware that Sida Acuta which is a major part of Burhner's protocol has ephedra in it. When I took it it was last summer (before I started biaxin) and I was sitting outside in 85 degree whether with a robe on and shivering". I never suggested or inferred that I was outing Burhner nor did I even remotely imply that somehow Burhner was hiding that ephedra is in Sida Acuta. Burhner states in his book (which I am very familiar with thanks for the suggestion) that Acuta has ephedra.

    The context/purpose of using the ephedra experience (it very well could have been another herb from another protocol) was quote "Because many herbs are poorly understood you are taking unknown risks adding herbs to biaxin. These herbs are very powerful and with children one has to be more aware. The more I learn about western abx and herbals the more I believe they should not be mixed".

    Try re-reading what I said and hopefully you can come away with the concept that "I am wary of mixing abx with herbs. And that with children I think it is more dangerous". Now I do not expect agreement but that is what I was stating.

    I have had my CYP 450 cytochrome analyzed to better understand my personal metabolic profile. It is important to understand that we all metabolized drugs and herbs differently due to genetics. I also use a sophisticated computerized drug/herb interaction program that includes my metabolic panel to assist me when taking drugs/herbs. I have considerable experience in alternative therapies especially TCM herbs and acupuncture. 10 years ago I was mid-diagnosed with Lyme + babesia and was treated by 2 of the top LLMDs and also did the Zhang protocol for Lyme. I then found Ritchie Shoemaker and he save my life with a mold diagnosis. In a few short months I recovered completely after CSM + $100K house remediation. Yes $100k. So I have seen that LLMDs can be quite as narrow minded as standard western docs who do not believe in chronic Lyme/bart.

    Ironically I now have a firm diagnosis of bartonella from Galaxy diagnostics in Sept 2011. I have virtually not one diagnostic indicator of Lyme disease. I believe as Edward Breitschwerdt believes bartonella is not a co-coinfection but a stand alone disease that has multiple vectors/sources and that bartonella is very under diagnosed. I undoubtably had it for years but because I was treated with hormones and radiation for prostate cancer I kept blaming my symptoms on that hence my delay finding bart. I have a very severe case of it most like due to how long I have had it before tx started.

    You also commented about me "The last time I saw this person on the forum was about 1 year ago. He had lots of information about abx protocols then as I recall, but told us nothing about his history, or whether he has children that he has recovered. Nothing."

    If one looks at my comment history I joined the list in July 2012 and post 35 times up to Dec of 2013. I then quite posting because I realized that I was on a list of mostly women who were self treating their children. And you all did not like what I was saying so I quit for a few months. I have nothing to hide nothing at all. Rowingmom you sound like I am to be distrusted because I am not one of you. After all I am probably old enough at 66 to be your father. But I think if you go back and read some of my posts I did talk about my history. I do not understand why you think I have told nothing about my history or my children. How strange. Is having a sick child a requirement to post on this group? I myself did not like it when the Pandas group was combined with Lyme group. Two very different diseases. I have a nephew with Pandas and keep up closely with my niece on his medical condition so I am at least familiar with the disease.

    "As for your comment While I don't think rifampin should be used alone because resistance develops quickly, I don't think Trinity's doctor needs to be questioned".

    Remember the context of the question from trintibella "my child can handle the minocycline and there is some improvement on it, but the bactrim is a no go...wondering if anyone ever used minocycline alone to treat lyme/bart?" I was not questioning Trinity's doctor. I was answering the question if anyone use minocycline as a mono treatment for bartonella". So I was responding to the question about mono treatment and I was not "questioning" Trinity's doctor! I was answering a query.

    As for your response that "I don't think rifampin should be used alone because resistance develops quickly" I would disagree with it. It is well established that no one western abx can kill bart. Resistance to rifampin is not the issue. Rifampin is one of the major drugs of choice because it is so effective at breaking down the cell wall but an additional abx is needed to kill the bacteria hence no one western abx can kill bartonella. Breitschwerdt has established that dogs show early resistance to azithromycin as well as poor outcomes with doxy in dogs. I have read every article Ed Breitscwerdt has published.

    That said here is link to on the better papers I have read on bart and Lyme. It's by a German doctor who has published 40 papers on LYme and all of them except this one are in German.

    Chronic Lyme Disease and Co-infections: Differential Diagnosis

    http://www.benthamscience.com/open/toneuj/articles/V006/SI0078TONEUJ/158TONEUJ.pdf

    As for me I am a western trained medical professional scientist whose training is in biomechanics. I have nearly 40 years as an allied health care provider and have published in peer review journals. I am a skeptic when in comes to medicine. I think most medicine both western and alternative medicine is not very well practiced. I would say only about 20% of practitioners are any good.

    And finally you say "If you have cured yourself of bartonella with biaxin/rifabutin, good for you. I am glad that you can come to this forum and state that the abx protocols others are using are useless. I would personally leave the abx decisions up to the LLMDs".

    1. I am not cured and I am under the treatment of a LLMD. 2. I did not come to this forum and state that the abs protocols of others are useless. I cautioned against the use of abx and herbals together. That is hardly telling other people their protocols are useless. If you think I have inappropriately told someone their abx protocol is useless then quote me. I stand by my statement that singular abx does not have a chance to cure bartonella. I have read upwards of 150 scientific western papers (I have also read a herbal and other alternative papers) on bartonella. I have yet to read one paper that claims a mono-thereapy is effective. Otherwise I have to consider this comment deliberate sarcasm. You have created in your mind a fantasy of who you think I am and then have responded to that fantasy. "The last time I saw this person on the forum was about 1 year ago. He had lots of information about abx protocols then as I recall, but told us nothing about his history, or whether he has children that he has recovered. Nothing".

  5. Does anyone know if this can be done on your own? I don't know if our LLMD is familiar with this plan. I would hate to do anything that interferes with my son's treatment but was wondering if you do not have a dr to guide you, can this be done from his book and website?

     

    We are still in the early treatment stage, only 2 months on doxy and biaxin, plus I am waiting for blood work results from a nutritional panel. We see our dr next week and I was going to ask him about this.

     

    I know RowingMom is familiar with this protocol, but just wondering if anyone had any feed back.

     

    Thanks

     

    You need to understand that biaxin (which I am taking with rifabutin) is a major C3A4 inhibitor. This means biaxin can affect the bioavailability (usually but nor always increase) of many drugs and herbs.

    Because many herbs are poorly understood you are taking unknown risks adding herbs to biaxin. You should also be aware that Sida Acuta which is a major part of Burhner's protocol has ephedra in it. When I took it it was last summer (before I started biaxin) and I was sitting outside in 85 degree whether with a robe on and shivering. These herbs are very powerful and with children one has to be more aware. The more I learn about western abx and herbals the more I believe they should not be mixed. Especially with powerful drugs like biaxin and rifabutin. I also believe that not all negative reactions are herxes. One simple may be having a negative response to the combo of drugs and or herbs. Herxing is very difficult to understand. When the body is overloaded with inflammatory agents the threshold for painful episodes it lowered.

  6. My son is 11 and our whole situation started 2 years ago with strep and seemed to be constantly triggered by other things too. So I guess he would be in the PANS catagory. Anyway, things have not improved so we tetsed for lyme. He came back positive. We are currently doing Biaxin and have an appt with LLMD in January. But the dr he sees now wanted to try a steroid burst this week. I have read you should not do steroids with lyme. I just want to know what to look for. He is only on the third day and has complained about being nauseous and dizzy and has been having bad headaches. What should I be seeing?

     

    Thanks

  7. I recently took 6 weeks off of AZ and doxy to be retested by Galaxy for bartonella. I was not finished with antibiotics by any means; the test was to gather further information.

    I declined severely while off meds and I notice my GI problems returned. In my case I will have multiple loose stools and get completely washed out as a result. This problem returned after a few weeks off antibiotics.

    Just one take on at least trying AZ and see how he responds.

    Red

  8. A protein has been identified that ultimately will lead to much better testing results to find active lyme disease. As we all know to well the inadequacies of present lyme test this one looks very promising: because if you have the protein in your blood then it proves you have active lyme and need treatment. Now all we have to wait for is getting this test on the market.

    http://www.sciencedaily.com/releases/2013/03/130326194140.htm

    Red

  9. FWIW I asked DD's LLMD about CD57 and he said that Ginger Savley (sp?) who did the original work with CD57/was a big proponent of it, at the recent ILADS conference advised that after looking at thousands of patient records, she could not correlate the data with CD57 and is no longer using it. I know many people do, I'm just putting it out there.

     

    In regards to Doxy even though it says not to, most people take it with food. With Vitamin D we waited a while about six months into treatment, there are different schools of thought, some that D feeds Lyme and some that you need D to rebuild the body even if it feeds Lyme. If you are really feeling bad maybe eliminate it and add back,

     

    Have you been completely cleared of Babesia? The reason I ask is that I understand CoQ10 feeds Babesia and should not be taken by someone who has babs.

     

    Also one thing we have found Burbur by Nutramedix really helps with detox/herxing. My DD9 is taking 5 drops, I am not sure the adult dose but it is out there on the internet. It may be something for your to consider, I just give it far away from the abx.

     

    Oh and yes, Lyme can come and go like that. You may need to consider treating when symptoms crop up going forward. Good luck

    Vit D is absolutely essential to immune function. Anybody who thinks starving their body of Vit D to starve lyme is making a huge mistake.

    As for starving Lyme here is a recent article about manganese Quirky Lyme Disease Bacteria: Unlike Most Organisms, They Don't Need Iron, but Crave Manganese

    http://www.sciencedaily.com/releases/2013/03/130321205712.htm

    Red

  10. I was treated 4 years ago after a tick bite that had small rash, reg dr. did upon my insistance put me on Doxy even though bloodwork came back negitive. I took abx I think for 30 days.....anyway now 4 years later I have very sore muscles, acheness, weakness in my arms, shins hurt, and extreme fatigue. I also have "pins and needles" feeling or creepy crawley feeling skin. At night seems worse with alot of leg twitching.

    I saw LLMD yesterday and he feels I definatly have lyme. He ran cd57 and several other blood tests. He has started me on Doxy, Vit d3, womans supplement, CQ10 and is taking me off zoloft and putting me on trazadone as well as probiotics.

     

    I have been working hard getting my ds7 treated for P.A.N.D.A.S and in the process found this LLMD who is treating son for lyme as well, as I was doing research for him I realized that I had alot of the lyme symptoms as well.

     

    After 4 years of feeling o.k, is it really possible that lyme could show back up? Would this be considered "chronic Lyme", I am just learning about all of this and it seems a bit overwhelming.

     

    Any thoughts or suggestions welcome.

    I had very similar situation with a bit more history to it as I did high doses of doxy on the 1st day of rash and still got extremely fatigued. Over the years I recovered but had low grade chronic symptom like yours but then really crashed this past year. I had every work up for everything and all normal except for bartonella per galaxy diagnostics. I recently sought a 2nd opinion and just finished 6 weeks off antibiotics which made me so sick that I no longer have the strength to drive a car one mile. A heavy price to pay for a 2nd bart test. I am back on doxy and AZ and will add low dose rifampin later. It has been a horror story. I abhor diagnosing on symptoms but you sound much more like bart than lyme. Vit d does NOT feed lyme. In fact D is critical for immune system function. There are no scientific papers about Lyme and D. And I think you can be safe to take CoQ10. Lot of folk lore out out here about lyme and other diseases. Bartonella is a stand alone disease and is not a "co-infection". Early epidemiological work is beginning to show that bart may be more common than lyme. Your labs to not look that bad. YourCD 57

    is at the border of low and your Vit D is very low.

    Red

  11. From this article http://www.huffingtonpost.com/2013/02/18/human-parasites-video_n_2679698.html

    (there is also a video for those interested)

    "Did you know that only one in ten of the cells in your body is actually human? That's right. A whopping 90 percent of your cells are bacterial, viral, or parasitic in nature.

    The NIH's Human Microbiome Project is ambitiously aiming to characterize the microbial communities living in us. And while the vast majority of these germs are symbionts, once in a while, we pick up a straggling critter that's not just along for the ride--it's there to leach our nutrients at all costs.

    These parasites fall in five distinct categories, the first of which is the most numerically abundant animal on Earth: nematodes".

    Red

  12. We're in the new apartment slowly bringing over just what we need to live right now. I am so paranoid about bringing spores over, but it seems virtually impossible not to bring ANY. I had my car detailed, dumped my purse and wallet, cleaned every credit/plastic card, washed coins in the dishwasher, had the dog professionally groomed, bought new mattresses and towels, left all my shoes behind and bought one new pair, bought a new vacuum cleaner, bought new tooth brushes and makeup, made everyone shower and put their clothes directly into the washer if they had been at our house, used booties to walk around the apartment if we weren't staying long, and on and on. We also vacuumed and used an air compressor on the few pieces of hard furniture we've brought over so far, alternating this with wiping it down with clorox wipes and vinegar. Even so, I'm afraid we've made mistakes or been sloppy and messed it up. We washed the clothes at our house on a sanitize cycle with detergent and vinegar, dried them on a sanitize setting, and put them right into clean plastic bags, but now I'm afraid that was a mistake. I've read elsewhere that you shouldn't take your clothes to a laundramat, because these are often moldy or being used by people from moldy buildings, so I don't really know what the right solution is.

     

    Red, do you think lots of vacuuming and meticulous cleaning at the new place will mitigate any mistakes we've made in the move?

     

    Also, can electronics such as tv, stereo, and boombox be salvaged? Piano?

    I do not see any problem using a laundry mat. Find a clean one and take your clean clothes out of the washer and put it right into dryer. Then take them right out of the dryer and stuff directly into a plastic bag. You will have to deal with the wrinkles and creases later. You are not going to get mold from a washing machine that has had soapy water in it.

    I think you have been meticulous and sure you will not get ever last spore. Electronics are OK just do not take them apart in the house if they need fixing. The most likely have some spores inside but that is small potatoes. I would never ever use an air compressor as you are asking for trouble pushing dust into the air. Hepa vacuum or wiping. Swiffers are better than anything. Otherwise good old soapy water. Vinegar does nothing to mold and the same for chlorine. I would expect the piano to be cleaned carefully if it is a Grand or open piano. I wonder about an upright. Is there opening in the back where spores can get into? If you had it tuned you would open that area and that might be a problem. Again HEPA vacuum is the way to go.

  13. Red -- I have been puzzling over making a plan for remediation. The part I don't understand is, I hear some people emptying one room of the house, cleaning it, and then one-by-one bringing in items into that room. Not sure if they are cleaning just before bringing them in, or just after. Either way, how to avoid cross-contamination. I read one write-up from someone in the remediation industry saying best results are to really take everything out of the house, clean the house, then bring things in after they are cleaned. It makes sense that's the best, of course, it's probably also the hardest.

     

    Our home has a few small bedrooms/bathrooms, a hallway, and then a fairly larger living/dining/kitchen area, and that whole area has no doors and opens to the hallway as well. Realistically, it seems harder to clean things room-by-room in this circumstance, without greater cross-contamination risk.

     

    Any thoughts on this? It occurs to me to ask you as I read what you wrote about the laundry. You were laundering clothes in the old moldy location, then bringing to the new location? You felt cross-contamination risk was minimized to acceptable by taking them straight from machine into plastic bag?

    It is physically impossible to make a clean room in a house and then move things into that room. 1. you cannot clean a table, move it through a moldy area without re-contaminating it. 2. The moment you open the door to the "clean room" it is no longer a clean room. Spores are in the air all the time and especially when one is moving around.

    Everything has to leave the house, clean it and then bring it back into a clean house.

    I was NOT laundering clothes in a moldy location. All laundering was done out of the house. All contaminated bags were not reused for clean clothes. They became garbage bags that were kept outside the house in a shed. The house was virtually empty. After remediation the house was fogged 3 TIMES, yes 3 times with sporicidin and cleaned after each fogging.

    Remember the HVAC system is a huge monster when cleaning a house. The square footage in the duct work and the air handler is enough to give me the shivers. One has to deal with that if they have had a major mold problem.

    Red

  14. Although this article references Ritchie Shoemaker it fails to mention the real ERMI testing.

    Shoemaker is a big proponent of ERMI testing like the kind performed by Mycometrics

    http://www.mycometrics.com/

    All mold spores tend to fall and settle out on horizontal surfaces. So mycometrics offers a sterile test kit that you attach to your vacuum cleaner. You vacuum a specific area, reseal the canister and send it in for analysis. Another way of perform this test is to put out a large clean plastic garbage type bag and place it on an elevated surface like a cleaned off table. You let all dust settle on to it and then clean it with a swiffer. Swiffers are electronically charged so they pick up all dust and spores. You then put the swiffer in a clean plastic baggie and send it for analysis.

    Shoemaker has recommended this method for years. I am surprised that this article, while referencing Shoemaker failed to at least discuss these methods. I noticed they were willing to sell a special "HEPA" vacuum cleaner for $200 for vacuuming testing when all that is needed is the sterile canister or the swiffer method.

    Red.

  15. My LLMD also said to take it on an empty stomach, because then it only binds to the toxins, and not to the good stuff.

     

    That may also be why he said to wait to take the supplements.

     

    I'm starting to take it around 11:00 a.m. (about 4 hours after eating breakfast and 1 hour at least before lunch), and then again at bedtime.

    Cholestyramine does NOT bind only to toxins. CSM is a bile binding salt. It literally binds to the bile and removes the bile directly. The liver then has to make new clean bile to replace what CSM just removed. Otherwise bile keeps recycling itself and mold stays in bile. The only way toxins get removed is if the toxins are in the bile. Mold toxins are fat soluble and therefore easily dissolved in cholesterol. That is why CSM works so well on mold. CSM was designed to remove cholesterol and it just so happens mold is in solution with cholesterol. It remains to be proven that bacterial neurotoxins are found in the cholesterol/bile. My thought is that neurotoxins from bacteria have to be removed via the immune system via macrophages.

    Red

  16. We are getting ready to move out of our house. We take possesion of an apartment tomorrow and will ERMI test it before moving in. My doctor says we can take hard furniture, clothes, dishes, cookware - anything that can be washed. He said to wash with bleach, but I've read not to use bleach on mold, so I want to be sure we're doing this right. Its hard enough (and expensive enough) to do this once - I don't want to have to do it a second time. Not to mention I'm very sick, and want to get well as quickly as possible! I'm wondering if others have experience with this and what you used to wash clothes, furniture, etc. We will just run our dishes, utensils and pans through the dishwasher, per Dr. Shoemaker's website. But I haven't found a lot written about how to best wash other things so you don't contaminate the new home. Any tips, experiences and/or resources would be much appreciated.

     

    I'm also posting on the PANDAS forum.

    I have had extensive experience with mold remediation. anything like tables and hard surface furniture that can be cleaned BEFORE you move into your new apartment is OK. All soft goods like clothes have to be washed in soapy water: no dry cleaning as it does not remove spores from clothes. We found that a lot of "dry clean only" items came out undamaged from a regular washing machine. As for using bleach on clothes it is unnecessary as the soapy water will take out the mold. Besides that you do not need to expose yourself to chlorine fumes. As for using chlorine directly on mold do not bother as the store bleach is only 4% which does NOT KILL mold. Only 12% bleach kills mold and that is industrial strength. All other soft goods like couches, mattresses and books go to dump. We saved a couple of couches only by taking them down to the frame and putting in new padding and then reupholster. Extreme care to detail must be taken to not cross contaminate your new living quarters. Do not bring in spores with you. Take all clothes and wash and put in clean plastic bags to new living quarters. Luggage must be considered contaminated unless it is all hard plastic.

    Red

  17. We are getting ready to move out of our house. We take possesion of an apartment tomorrow and will ERMI test it before moving in. My doctor says we can take hard furniture, clothes, dishes, cookware - anything that can be washed. He said to wash with bleach, but I've read not to use bleach on mold, so I want to be sure we're doing this right. Its hard enough (and expensive enough) to do this once - I don't want to have to do it a second time. Not to mention I'm very sick, and want to get well as quickly as possible! I'm wondering if others have experience with this and what you used to wash clothes, furniture, etc. We will just run our dishes, utensils and pans through the dishwasher, per Dr. Shoemaker's website. But I haven't found a lot written about how to best wash other things so you don't contaminate the new home. Any tips, experiences and/or resources would be much appreciated.

     

    I'm also posting on the PANDAS forum.

  18. Red are you sure about the refridgeration? The pharmacy that compunded it for my 8 y.o. gave it to me warm and did not tell me to refridegrate it! ugh....

    Wow sorry it is so painful for you, that must be awful. My daughter had a crying/sad herx one night and that was it. I see some marks that have come out on her arm, they are not bright purple but they look like stretch marks. That's it and she's been on for 10 days.

    Yes I am positive about refrigeration. I have received it both from a compounding pharmacy and Duke Children's Hospital Pharmacy and both said refrigerate.

    Yes my herxs are horrible. They retard my treatment as I have to lower meds to keep them under control. My LLMD says I have the most pain of all her bart patients.

    And yes rifampin is notorious for interfering with many medications including doxy. Rifampin causes the liver to super-metabolize many drugs before they can enter the blood stream. But it is dose dependent. In other words it happens much more at higher doses. I have a program from a company that tested my 450 cytochrome profile and it is plugged into all drug interactions.

  19. Red are you sure about the refridgeration? The pharmacy that compunded it for my 8 y.o. gave it to me warm and did not tell me to refridegrate it! ugh....

    Wow sorry it is so painful for you, that must be awful. My daughter had a crying/sad herx one night and that was it. I see some marks that have come out on her arm, they are not bright purple but they look like stretch marks. That's it and she's been on for 10 days.

  20. Liquid rifampin can be compounded. I get my done at the hospital pharmacy but there are compounding pharmacies that also do it.

    I cannot tolerate adult doses of rifampin. In fact my bartonella is very susceptible to rifampin but the herxs are severe. Last night after restarting rifampin 4 days ago ( I worked my way up to 20 mg twice a day) I had the most severe herx ever. It was mind boggling painful for 3 hours. Even with lots of vicodin and xanax. I will have to take a day off and restart at 5 mg. I will probably try pulsing rifampin every other day. I wish I had access to morphine to help with the herxing.

    The liquid has to be refrigerated and is only good for 30 days. I do not know how I could manage without the liquid. It allows me to take very low doses. I am also on azith and doxy but the rifampin always puts me off the deep end.

  21. Clay is a perfect example. Clays can contain toxins of their own.

     

    I believe detox is done by the liver and the best we can do is to improve our health by eating correctly and maybe using a few supplements to reduce inflammation and promote healing.

     

    Red,

    I have no scientific papers on epsom salt baths, but I do know that sweating and opening skin pores can be an effect detox mechanism in general. But you say clay can contain toxins. Do you have any papers to support this? I don't use clay so I have no dog in the race but in one breath you rail against folklore but in the next breath make a similar claim against clay. I was wondering if you had anything you could share on this as it would be a really important piece of information.

     

    As for detox, I feel you can do much more than just eating correctly and keeping inflammation in check. You can check your methylation status, which greatly effects many aspects of health, including your transsulfuration pathway, which is your body's main detox pathway. You can supplement with IV glutathione or precusors to glutathione and use other anti-oxidants such as vitamin C, licopene, resveratrol... you can use supplements such as milk thistle which help clear/activate liver metabolic pathways, you can make sure your bowels are moving quickly enough to clear toxins rapidly to prevent them from being reabsorbed into the blood stream, you can flush the kidneys frequently, you can check for heavy metals toxicity...I think it goes way beyond diet and anti-inflammatories. At least, that's been my personal experience.

     

    I'm glad you've finally found a protocol that works for you after such a long battle. But I agree with S&S - what works for one doesn't always work for another. I've spent lots of money on herbs and tinctures that haven't done squat for my kids but seem to work wonders for others. It is, unfortunately, a matter of finding what works for you, with your individual genetic makeup, environment, diet, lifestyle, unique combination of infections, and practicality of a certain protocol for a child. Kids often won't suck it up and take a nasty tincture or be able to tell you how they feel after taking something. So I'm not comfortable suggesting to jjhealing that the path she's on is right or wrong, safe or dangerous, effective or ineffective.

     

    JJHealing - yes, please let us know how things go. Best of luck with the protocol.

    To answer your question about clays here is a full article Bentonite, Bandaids, and Borborygmi

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2895274/?tool=pubmed

    All the anti-oxidants your mentioned promote inhibition of NF-kB and other inflammatory proteins. I take some of these anti-oxidants specifically to reduce inflammation. They have nothing to do with detox.

    Please explain what you mean about "methylation status and transsulfuration pathway". These are incredibly complex biological mechanisms. Do you understand methylation and the transsulfration pathway? And do you understand how the supplements/chemicals you are taking might affect these biochemical processes in the body and the disease(s) you are trying to kill? I have read numerous articles about the above and this is incredibly complex and scientific.

    Phagocytosis is the mechanism whereby the body is cleaning itself. The best we can do to promote "detox" with supplementation is to reduce inflammation and promote phagocytosis. Basically setting up the body to heal.

    I have no idea yet if what I am doing is an effective protocol. One month of felling better is way to soon to say I have found a path to healing. I fully expect to probably have to go back on multiple antibiotics again if I am to achieve a full kill of bartonella. What I am trying to accomplish right now it get body strong enough and get more die off of the bacteria so when I have to use the heavy hitters I hopefully will not be as sick. I have two very well trained and experience clinicians, one an OMD who practices TCM and the other a western trained MD who is LLMD guiding me through this process.

    I find it scary at best and horrifying at worst to put in my body supplements and chemicals that are touted on the multitude of websites claiming "cures" to Lyme/co-infections, and other bacteria. All this is promoted often with little if any scientific evidence. I never said to anybody that the pathway they are taking is wrong. What I have promoted is not playing with supplements and other products without a firm scientific understanding how these products affect the body. Many people are self treating or seeing clinicians that do not have the science and medical training to treat these very severe illnesses. How can any chiropractor claim to have the medical training to diagnose and treat the complex diseases many of us suffer from is beyond my comprehension. And it is not just chiropractors getting in on the game. I fully understand how frustrated we all are in our journeys through this mind field but turning to products, treatment plans and protocols that are promoted on websites by people selling their wares is not my idea of medicine. I am and have been an allied health care provider in medicine for 37 years. I bring a great deal of skepticism to both western and alternative medicine. I believe that only 10-20% of traditional western medicine is any good and I find the alternative medicine field no better. That does not leave much for us to choose from.

    Addendum: here is a perfect example of what I am talking about. From the "Autism Coach" Subject "The Glutathione/Sulfation/Methylation Pathway" http://www.autismcoach.com/Articles.asp?ID=252

    Great appearing article about a doctor who studied 20 children. Said doctor did blood samples and then supplemented these 20 children with products being sold and touted on this website. According to this website the blood work in these autistic children improved with the supplementation. But nothing was said if the symptoms of the children improved. Additionally this was a cohort of only 20 people. In science that is just a starting point. You then move on to a much larger cohort. And then you state the results of the supplements: i.e. did you actually improve the status of your patients. From the "Autism Coach" website "Autism Coach offers, supplements, dietary products, and software to help individuals of all ages within the autism spectrum reach their maximum potential."

    So are you proposing that I am to assume that my Glutathione/Sulfation/Methylation Pathway needs supplementation just because I have bartonella? Should I just start taking this stuff because this doctor studied 20 autistic children? Not only am I an adult but I am not autistic. If I was do to this protocol I would at the very least need to have my blood levels checked first: wouldn't I?

    Red

  22. I'd like to share my experience with Dr Zhang's protocol, and to see if anyone else has used it and what's the outcome. My DS8 has been on Dr Zhang's protoc0l for a month. It's chinese herbs extract in capsules. On the fifth day of treatment, DS started to have fever of 102 for 2 days, then I lower the dose to 1/2, and she continued to have fever for another 2 days, with headache, fatigue, muscle pain etc.

     

    I put her on full dose again once her fever was gone ( total 4 days, later I learned from LLMD that I should have not used tylenol unless it's 104, she said it's good to let it out, tylenol push bad stuff back in body), 10 days after that, her tics has been coming back with vingence, new tics and more sevier, and very hyper...it's been 10 days with tics so bad, and I don't know when her tics will stop. Called Dr Zhang, he said it's the herx, usually 1-2 wks of reaction. Part of me is glad that she is having herx, but I am also concerned that some kind of toxin is hurting her CNS, might cause damage.

     

    I mainly tried to keep her bowel movement smooth by giving her prune juice and emergen-c 1000-2000/day (it works), and take epsom/baking soda bath or clay bath every other day, to help her herxs. Any other suggestions that can help her? She did not complain any discomfort though during the whole tic episode, I don't know if she is aware of it. and she seems to have lots of energy going school and play outdoors.

     

    Dr Zhang's clinic is located in NYC, we never met him, only consult on phone. Dr Andrew Weils said this Drs protocol is the best method he knows for treating lyme.

     

    His website: http://zhangclinicnyc.com/, I ordered his book 'lyme disease and moder chinese medicine' at amazon.com, which is great for me to understand his method. Ever since I learned my DS might have lyme/co-infection, I bought 10 books at amazon and studied day and night on the web to try to find the best way to proceed.

     

    The reason I chose this are as follows, and I hope I am right and my DS gets well;

    (1). LLMD wants to put her on 3 antibiotics for 2 years, yet not 100% sure if she has lyme/co-infection, since with blood test you can never be 100%

    sure, Igenex did show many positive bands, plus antibody to Erhlichiosis(both kinds), mycoplasma, HHV6, not Babesia nor Bart. I read that Erhlichiosis is known to cause false positive on lyme bands. So basicly we don't know what exactly we have, or if the infection is current. She has to try different antibiotics to figure out what works. But, Zhangs herbs have wide anti-micobial spectrum. that means you don't have to what you bacteria you have, it covers. He use specific herb for Babesia since it's parasites. (Energetic testing through 2 Drs only find erhlichiosis)

     

    (2). Not only just kill the germs, like antibiotics, more importantly, make your immune normal again to clear the residual lyme/co-infec. he said lyme/co-infec can be eradicated, not just germ load reduction. He has gotten many well after they failed antibiotic or keep relapsing after stopping antibiotics. So to me, if he can get people failed antibiotics well, then why do I even go antibiotics in the first place.

     

    (3). Side effects. His is with little to none toxicity, expesially for children, his youngest patient was 1 yr old.

     

    So that's my thoughts. Am I too risky to rely on one protocol? When DS going through all these tics..I sometimes have a little doubt about am I doing the right thing? But then I don't know what's my alternatives. I have been reading in this forum for a while, and I feel for everyone with a child sick. and it seems antibiotics is a hard way to go through..I urge you Moms out there when your child is not doing well with antibiotics, pleae google 'Zhang's clinic' to find out more about this.

     

    I have a question on blood testing. Now that we are on treatment for a month, and have herx, when would be a good time to do another blood test again? to see if the test come out positive for Babesia or Bart. I have spent too much money with testing already ( Igenex, and Advance culture test), want to stick with what insure will cover. Does LabCorp test Babesia? or any other mainstream lab you can suggest? How can I tell it's time to stop treatment by looking at blood/lab test? etc.

     

    P.S. you can ask for a 15 free consultation with Dr Zhang. He is very nice. If you want you can pay $150 for formal consultation and become his patient, and he is very accesable via phone afterward for free, although he does not have lots of time for you but he is there for you. I was freaking out with DS herx, and called him 3 times in last month, and he is right there to talked to me 5-10min each time which is nice to ease my

    mind.

     

    Any advise is greatly appreciated.

    First you need to understand that Zhang's protocol is not Traditional Chinese Medicine. What he has done is make pharmaceutical grade products from herbs. Now many standard western drugs begin as herbs first and then they are often synthesized. Rifampin is a perfect example as if was first found in the bark of pine trees in France. So you have to understand you are giving your child pharmaceutical grade high strength drugs. Regardless of what Dr. Weil says these medicines have to be treated like others. I do not think major herxing is good. I think it is a stressor on the body and in a child it is even more dangerous. I also would be very careful about "detox". There is a lot of folklore floating around the Lyme community about detox and most of it has no science backing it. Clay is a perfect example. Clays can contain toxins of their own. Epsom salts cannot remove toxins from the body. If you were able to absorb magnesium sulfate through the skin just what happens afterward with all the Mag salt in the blood stream? How does it get out. Some people say that epsom salts "pulls the toxins" out of the body. Please someone show me one study on the physiology of epsom salts clearing toxins.

    I have had some very major herx events just from treating bartonella and I think one is worse off afterwards. It can take me 5 days to clear from these events. The body/liver gets overloaded with toxins and inflammation results.

    As for blood testing I think it is contraindicated when one is being treated. The only true test is to clean of all drugs for a few weeks and then be retested. For myself I have set a standard that if I can get well and stay well for 3 months I will come off the meds and then get retested for bart at Galaxy Diagnostics. Galaxy uses PCR/DAN amplification with a 99% accuracy rate. They do not uses titers or blood smears: they are looking for active DNA in the blood. You test + and you have bart.

    I am trying a protocol right know that is a mixture of true TCM + western antibiotics. I am taking azithromycin + TCM herbal formula that I boil and drink a couple of times a day. I started this protocol because I was having trouble with massive herx events with multiple antibiotics and also because of GI pain from said antibiotics. I take 80-100 billion units of various probiotics including fermented kefir coconut water. The original protocol was posted on Goodbye Lyme newsletter and can be viewed at

    http://goodbyelyme.com/free-articles/coinfections/busting-bartonella

    I have an Oriental Medicine Doctor who is very well versed in Chinese herbs. SHe has written a textbook on herbs and has a true TCM practice which includes a full Chinese herbal pharmacy. She reviewed this protocol and said it made sense to her. Obviously she had to see me so she could tailor the formula specifically to me. The first go around I had major herxing 3 days in a row even though we were going slow. So I stopped and she made a new formula. Even though I had major herxing I recovered much quicker from the herbs than when I herxed on just antibiotics. With the new formula I have slowly worked my way up in dosage over the past 2 weeks. When I began to see an increase in herx symptoms I took 2 days off the herbs but continue on the axithro. My symptoms calmed down and I restarted today. Normally I would also have been seeing her during this time for acupuncture but she has been out of the country. So far I can say I improved considerably. Now I should also say that previous to this I thought the antibiotics were also helping but it was like riding a bucking bronco. I am able to walk again for exercise. I am walking 3 days a week and am up to a mile. I am being careful not to push myself. I have significantly less pain in my muscles and bones even after working and walking. I was going to wait on presenting this information as I have only been on this 1 month. But your post prompted me to go ahead and write about. I think this can only be done with an OMD who practices TCM. The guy who wrote this is Greg Lee at Two Frogs Healing Center.

    The other thing I focus on is reducing inflammation. I believe detox is done by the liver and the best we can do is to improve our health by eating correctly and maybe using a few supplements to reduce inflammation and promote healing. Both bartonella and lyme produce the major inflammatory transcription factor called NF-kB. NF-kB can be measured in the blood stream. It causes vascular inflammation among other things. So I take a few very high quality antioxidant "inhibitors" of NF-kB. I have no idea if I am actually lowering NF-kB but I know what are good inhibitors and what are inducers. For more on NF-kB see http://www.bu.edu/nf-kb/physiological-mediators/inhibitors/

    Red.

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