MichaelTampa

I went right in with antibiotics, and feel, because of that, in the long-run I will have taken more antibiotics than if I had done it differently. Abx have certainly been the most expensive thing for me. If I were tossing aside urgency of healing, and looking toward reducing costs, I think I would do it something like this: - first, treat the worms first with adjusted diet, gamma rizole, then zeta rizole, then antihelminthics - second, find a good herbal formula or two or three and go at it for a couple months or so with that - third, if/when plateau, or ready to finish them off, then antibiotics - also 1st/2nd/3rd, find some good heavy metal detoxers and organ detoxers, do think they make all the other treatments more effective, there are cheaper ones and more expensive ones I don't know that this would work for everybody. It is closer to what Dr.K. in WA recommends. Believe it or not, there are LLND's out there who think they can treat lyme without abx. For anyone deeply concerned about costs, and willing to be a bit more patient, this would be a method to consider. Probiotics have also been very expensive for me! To do again differently, I would have worked harder to find a good-enough probiotic that was less expensive.

I'm not sure how to explain the patterns of symptoms you are seeing. Sometimes that's just hard to figure out. I've been on tindamax daily for months, never pulsed it like that, but might be in the coming weeks or months. What was the reason for giving it only on the weekends?

I'm not sure LabCorp everywhere will do this for you. Some places will only draw if they are doing the test for you. It's a matter of what you can find. Quest is just another big lab, nationwide I imagine, like LabCorp, and is another possibility. I had mine drawn by Granite Diagnostic Labs, which upon checking, is just local to my area. Their business is to do blood draws for $15 and ship the blood off to Quest or whoever, so that is where I went. Of course, some doctor's offices can do this. When I got the Cunningham "PANDAS" test, I went to an outpatient treatment center that I had gone to once that seemed really nice. Of course, this Cunningham test was a "study", and maybe that is part of why they were so willing to help, and do it for free. In any event, there is another idea you could check out. Now that you ask, I am a bit curious how others have gotten this done, because I feel like I kind of lucked into it for me.

Goodness, my doc has me on tindamax, which is another commonly used cyst buster. I imagine that would be the likely replacement if you can't get the flagyl. Have you tried another pharmacy that might have it in stock?

I got a 96 from blood taken on Feb 22. 100 or 150 supposed to be a sign of ability to stop without relapse. I am still experiencing symptoms, much milder than initially, symptom-wise have certainly come a long way. Doc says, when I am ready, to go ahead and start taking a couple days off of the abx per week as part of slowly getting off abx. Plan to retest CD57 two weeks after last test and go from there. Besides symptoms, I can tell from energy testing, the abx are just rating as so-so/marginal things to take, and my need for probiotics is WAY down, indicating less killing going on. I am still on a few detox items, a few nutritionals, and the Byron White herbal formulas, where are very good for me these days. Hearing more about the Byron White formulas these days and feel like they may be "the real deal". Of course, I didn't take them early on at my worst, so they didn't face the toughest competition here. Below is a history of my CD57 results. 03-15-2010: 30 04-25-2010: started lyme abx treatment with IV+orals (somewhere near this date) 06-25-2010: stopped lyme abx treatment (somewhere near this date) 06-29-2010: 54 (felt about halfway better) 07-22-2010: 70 08-23-2010: 27 (slowly went up without abx, and was feeling better and better, until started slowly feeling worse, this test confirmed it) 10-21-2010: started oral abx treatment (took a while because tried to get IV approved by insurance, couldn't do it) 12-28-2010: 32 (felt a lot better, but still surprised way low) 02-22-2011: 96 (they do say it really pops up toward the end of treatment Getting there!

That sure was a nice presentation, like the bug wheel.

No need to be off for re-testing. The test is looking for antibodies, not antibiotics, so they won't interfere. Recent use of antibiotics, to the extent it has killed some bugs and maybe put the immune system in a better position, could lead to a more positive-like result.

Just realized I forgot to mention, I has seen and heard the Enula (NutraMedix brand) be very effective against parasites/worms. Can also treat babesia.

Regarding forever or temporary, don't know if they know that for sure. What I read didn't mention temporary, though. My memory was it was in the Buhner "Healing Lyme" book. Scanning through his section on cat's claw, I'm not finding it. So, don't know where I saw that. The fluoroquinolones are not the only treatment for bartonella. The big two are levaquin and rifampin. Levaquin is the fluoroquinolone. I'm using Factive, which is similar, but not identical. Rifampin can be tough on the liver and is stopping it can be difficult with side effects as well. The fluoroquinolones can cause permanent tendon damage and, I have heard, a lot of other neurological problems. Reading on lymenet message board, you would get the impression these drugs are tolerated very poorly. Perhaps that is not the wider experience, I don't know, we can hope not. I haven't had any problems with the Factive.

Good questions for someone who knows, perhaps an LLMD or two could talk about this. Dr. J. who says it's no good for kids, and any who uses them for kids, would be interesting what they would say about, if anyone has occasion to ask... Interesting thought regarding is that when symptoms remit at a certain age. I haven't heard that for lyme at all, it certainly didn't happen that way for me. But, that has been reported in Tourette's, and, I believe, also PANDAS. Regarding the Tourette's, some have tried to tie it to the bones completing growth or catching up with each other, so to speak.

I do think it is likely a herx. I sometimes had something that perhaps was similar but probably was different. When I am on abx while using an oxygen concentrator or getting a massage, I used to have spasms and general feeling in muscles here and there that was just difficult to describe, but not painful. It sounds like you're having tingling, and that concerns me some, but it also might be just fine. If it keeps bugging you and you are nervous, you might try moving back to half pill a day or a break for a day or two. By the way, some feel that prior use of cat's claw can reduce effectiveness of fluoroquinolones (used for bartonella) in the future. I think the idea is that they are similar and the bugs will adapt. Not making a suggestion regarding that, by the time I read that info on it, I had already tried cat's claw for a couple weeks and then started testing no good for it, so had just stopped.

Sounds like a great idea. I have no kids stories to donate, but wish the project well.

My symptoms have just reduced a lot. They are still there, and the fatigue varies by day now, which is a huge improvement over extreme fatigue every day. So that's what makes me feel I'm close. He has this sheet where you grade your symptoms each visit, and that guides him a lot, and it was from those numbers (at least in part) that made him suggest we may be close to an end. He said the way he like to stop is "pulsing". He told me to start by skipping the drugs on Saturday/Sunday, and then after a while, also skip Tuesday/Thursday, and then after a while, stop completely. He said I'll know better than anyone when the right time is to do these things, and just watch how things go, if things get worse, then it was too early. We'll see. I'm not inclined to even stop for weekends until I see a really nice CD57. Yes, yes, it is a bit exciting, even if it is just talking and thinking about the finish line.

That link Fixit posted doesn't load up (at least now, on my computer). Here is one from ilads that has some info. http://www.ilads.org/files/compendium07/Stricker.pdf

These posts are timely for me, thank you. Just had my LLMD apptment yesterday, see him about every 8-10 weeks. We feel like I am getting close to end of treatment, ordering CD57 test again (was still horribly low 2 months ago, but that's a long time ago), but he also ordered C4A (no C3, just C4A). He didn't explain it, I know about a lot of other treatments and tests, I could tell the way he was talking he thought I knew about it. While I have heard them posted on this board or PANDAS, no idea what the test was for.

This came up just a week or so ago, someone posted they got CD57 from Quest, and I know I said that Quest doesn't have one. I am sure it had been that way a while. But, at the LLMD this afternoon, we are doing bloodwork including CD57, and the nurse is filling out the form for Quest. They are just more familiar with Quest there and like to use those forms. She changed it to LabCorp for me, LabCorp is just more convenient anyway. But, when I explained Quest doesn't have CD57, she said they do now, recently added it. So, maybe Quest does have the CD57 now...

I think in general if things are working, it is good to stay on them. So, if it is a herx, and manageable, really would be better to stay on it. Not sure what actual choices you have to getting a refill to continue. If herx is so bad, sometimes people reduce dose or take small break for a couple days perhaps, but a few weeks is a long time. Not the end of the world, but normally not ideal. You'll let the bugs regrow, and perhaps end up growing more resistant to the drugs you are taking.

Don't know much about this myself, but here is one link that looks reputable. There are many websites discussing this. http://www.lymeinfo.net/prevention.html I think little is known about transmission from cats/dogs. The lyme bacteria can infect many animals, human-to-human transmissions has happened, even one documented case of classic lyme rash following mosquito bite, so I think the possibilities are endless, but some more more unlikely than others. Real data and probabilities are just not available. It's more a question of taking the precautions you deem reasonable, which can be a difficult decision.

I have had plenty of nightmares, some were certainly herx-related. They often relate to issues experienced during the daytime and, from that, sure, some have been OCD related in topic. I'm not sure if any of the herx-ones were OCD in topic, but it's something that could happen to me.

For me I've done well on: - BioPure's Gamma Rizole for 1-2 months, then Zeta Rizole for 1-2 months, then antihelmintics (biltricide, and now others) - (these rizoles include the wormwood/blackwalnut/clove combination that are so popular now, but ozonated and much more effective than most non-ozonated versions) - avoiding onions/garlic/mustard has helped enormously (another thread explaining that just started) Other remedies that I have heard others have huge success with (but haven't tried myself): - ParaGone - ParaStroy I really think there is a lot out there. I remember going to one acupuncturist, told her what I was taking, wondered if there was more if this didn't completely do it, she showed me three other completely different remedies that I had never heard of. She said it can be good to rotate through them over time.

I imagine I am the only posting this recommendation, so let me explain further. I got this idea from a Hulda Clark book where the topic was curing cancer. She is dead now, was an MD and researcher, had some fairly unique ideas about what caused cancer. She has a variety of books out there, I imagine most/all of them mention the onions/garlic/mustard. The one I have in front of me that discusses it is "The Cure and Prevention of All Cancers". I borrowed a slightly different book from someone, then tried to buy it online and got this different one. What strikes me in reading both books is how different they are in terms of the information and recommendations. Of course plenty were the same, but they changed quite a bit as well. This woman was truly researching and finding things out and publishing them as soon as she could. In one book, we should avoid foods with malonic acid in them. In the subsequent book, it's really some other chemical that's playing more of a role in cancer than the malonic acid. (I compare this to the progression of, oh yes, borrelia/lyme causes tourette's symptoms for someone, it's not just some tourette's gene. But wait, why is it hard to get rid of the borrelia, is it heavy metals, is it worms farming the borrelia, and so on. And why are there worms. The point is, regardless of the explanation we have for something, there is always a deeper reason.) Anyway, it just strikes me as real research she was doing, meaning some may be dead on, but some needs to be figured out more. In her books I have read, though, pretty consistent is the onion/garlic/mustard. She claims they contain food for parasites and worms. She claims 5 days with complete avoidance of these foods, and all the worms will be gone from your body, in a much more painless way than antihelmintics. I can assure you, this claim is incorrect, 5 days was not nearly enough for me. But, I found avoidance of these foods very helpful. I think it has probably been 4 months or so since I went down that path. It made the herbals for worms work better, it got me ready to take the biltricide. I have not completely avoided, I've had a restaurant meal on Fridays every week, regardless of what ingredients are in there. My experience confirms she was absolutely on to something here. I cannot assure you that this would be everybody's experience, but I would expect that most with parasites/worms would benefit from this avoidance. Perhaps it would depend some on the specific parasite/worm, there are many varieties. By the way, from my readings of her books and various other places, it appears to me that she was the one who pioneered the wormwood/black walnut hull/clove combination that has become quite popular in treating parasites/worms. BioPure has made a very excellent ozonated form of these things, and I took the Gamma Rizole for 1-2 months and then Zeta Rizole for 1-2 months after that. Again, they became much more powerful for me when I started avoiding these foods. My progress was VERY slow without this avoidance. There was about a 1 month period in there where I could tell this avoidance was more important for me than the abx I was taking, even though the abx were quite excellent at the time. Now, after about 4 months or so of these products and avoidances, and biltricide for a couple days, I am finding that I can do well and eat these foods again more frequently, a few meals a week now. I am just this morning starting on other antihelmintics, and they are strong for me, indicating I still do have some worms I am working on. My point in bringing up the wormwood/black walnut/clove thing, though, is, she definitely got some things right. For those with the time to read one of her books, I promise you, if nothing else, a very interesting read. You will find some of her conclusions and recommendations absolutely crazy. And I bet some of them are, and yet perhaps a few are quite brilliant. You will likely walk away with a couple good take-aways as well. By the way, before I ran across this recommendation, I did take some garlic supplements. I have taken them for a period of time when energetically test as are good for me. Perhaps a month here, and a couple months there. The quality supplements are really only one or two chemicals--allicin or whatever, and perhaps they do not feed the parasites/worms like the whole foods do (don't know for sure). I know the garlic supplement was helpful for me when I took it, but really it was just "oh, okay, a little good", and not absolutely powerful/wonderful.

Don't know if this is exactly what you're looking for, but I know of one person who had tried many things and was going downhill, and credits the Hansa Center for healing lyme and saving his life. I believe it is run by Dr. Jernigan. They do make some herbals, too, and honestly, while good for me, haven't been as good as some of the other herbals I have tried. But as an inpatient, there is more than just the herbals, for sure. hansacenter.com

Not sure how much I know about this, other than I know the confusion well. Whenever I get a flu, I get some thigh pain. It happened recently again a couple weeks ago, I had a fever for about 5 days. So, I want to say, you know, it could be the flu. But, unless your daughter is just really melodramatic or whatever the word is, gosh, does anyone think of muscle pain from the flu causing the pain/reaction to the point your daughter is giving. And so, perhaps, more likely, a herx, more likely related to babesia with the muscle pain and fever. Of course, then part of me wants to ask, how normal is thigh pain during the flu? I mean, regular people, without lyme or babesia or anything. Part of me is wondering lately if I might have a little babesia, based on minor symptoms and the recent flu and exposure to someone who has babesia. Maybe just paranoid. Anyway, if anyone can set me straight on what a normal flu is supposed to look like, I would certainly appreciate that.

Never posted a poll before, goodness all the boxes to check and so on. Hope this turns out... For those mothers on this board who believe they have lyme (or had lyme), I am wondering how many of the husbands/partners also have lyme.

Just sounds crazy to flat out state, it's not medically necessary because a particular doctor prescribed it. Seems like an easy basis to fight with state insurance department, not fun, but geez, that doesn't sound like a very good argument, sounds like something an insurance company might do in reality, but would feel the need to come up with a better actual justification.