MichaelTampa

Glad to hear from you, and glad things are have been heading in a good direction! Regarding the nuts and coconut oil, I am eating a lot of nuts these days, and using some coconut oil. One "recipe" I want to share is, I'll soak in water for a few hours about a cup of raw cashews, maybe mix in just a few brazils and macadamias, and then blend into a smoothie with frozen berries, water, maybe a little cinnamon, and of course, coconut oil. It adds some nice sweetness and smoothness in there. I've been on low/no sugar for so long, I can do this without sweetener, given the relative sweetness of the rest of the ingredients.

So sorry it's been so tough. Glad it wasn't at least as bad this time as you were fearing. Sorry, no suggestions, but glad others have had some. Better days ahead!

I'm with Vickie as well. You use the dx you have. Sure they're wrong sometimes, but they're also evidence of the real problem you have, and it's just the imperfect medication community doing their best to document that for you. It's because the other ones aren't accepted that you ended up with the ones you did. Use them and enjoy!

Regarding the costs for things, it is a much tougher world for the lyme docs than it is for the chiropractors in terms of guessing what the insurance companies are going to do. I was eventually denied IV abx after two months, and now we are on orals as they have always been covered for me. But, when he was thinking at my last visit, of adding another drug, he first asked me how things were going with insurance, wondering if it would be too much expense for me. I quickly told him, the orals have always been fine, and he was happy to hear it, but that was information from him. I really think every patient is going to be unique in terms of what their insurance companies decides to pay for, there are so many variables in that equation. You peek over at the lymenet board once or twice and you will find there are plenty of patients who can't get their oral abx paid for. It's just shocking in a way, but it is the reality. Of course, some of those orals are really just enormously expensive, and I'm sure that's part of how that happens. Anyway, I hear ya, darn right, it is tough, sure would be great to know what the costs are going to be after insurance. That certainly does argue in favor of the oral treatments where it is submitted through insurance before you pay for it, so you know where you're at. The fact they require cash for the vitC IV, to me, is a red flag that insurance coverage is going to be touch-and-go, less favorable than other treatments. The only way you'll find out what it will be for your case is to actually do it, an unfortunate reality. On the IV vitC being dangerous, vitC and salt is something that some have had good success with for parasites. I don't know how many have tried it. A few point out it can be very dangerous, but I think it is more the salt than the vitC, at least, that is all I've heard about. I remember hearing once on the Canadian version of lymenet, talk of salt/vitC regimen is actually prohibited for fear of liability from people being hurt. I found that shocking, but I guess there is that point of view. Those reactions pixie is having really could be herxing/detox, I'm not going to promise you it's that, but it would not be at all unusual to have that sort of reaction. I know someone who started taking one single herb for suspected lyme, within 1 week she had skin sores with puss, kind of like pimples and kind of like ant bites, all over her body. I think much more common are the headaches and fatigue and increase in some symptoms. This is the reality of treatment for many, unfortuante as it may be.

I do think it could be herxing affecting the stomach, if you will. I also have had digestive issues, primarily GERD / acid reflux that has gotten much better with treatment, but the last couple times I've added more bug-killers to the regimen (once ketek, and once niacin) it has increased that problem temporarily while also improving other symptoms. So, kind of the same pattern you have seen.

I know someone with lyme who has the heart palpitations and dizziness. I believe that is a clue pointing toward a babesia coinfection.

I also think for your case, heading to a lyme doc makes more sense than spending the money on testing. They will be able to gear any testing toward what they think they really need in order to decide what to do. As always, ILADS is a nice place to ask, and so is the "seeking a doctor" forum on lymenet.org. Sure, LIA, how nice there is such a group. My sense is that there really is not a lot in our state, but I did run across recently through a contact here, with someone whose location might be good for you. Of course, I am happy to discuss my thoughts/experiences on my doc with you, although I would hope for you that you might find someone closer. PM me if you would like help with either of those last two. By the way, I am preparing to give a talk about lyme at my local vegetarian club next month, focusing on clues that might lead a person to suspect lyme is involved. I think one of the big-picture items there is "doing things that help for others, and they help you some, but not nearly as much as they were supposed to help you", and I think the 27 supplements fits into the category. I was about 80 different supplements at one point before I considered lyme, and in retrospect, certainly consider that a clue. After reading Dr. Burrascano's guidelines (from ILADS website), I was able to redo the supplements to target with more useful ones and use fewer supplements and get more out of them. Of course, there was nothing like lyme treatment to make me just need way less. Michael

They are viruses, yes, so, I guess in the sense of PITAND, I imagine they could. I have heard other reports here that people feel viruses are triggering (or at least coinciding with) their exacerbations.

I used 600mg daily with breakfast for me for many months, don't need it anymore.

Other suggestions, things I have heard, are syphilis, mycoplasma, and "dental spirochetes". I don't really know what's accurate.

your saying to treat parasites AVOID onions garlic i would think it was the opposite..espcially garlic Yes, I am saying that avoiding onion/garlic/mustard has helped me enormously in treatment for parasites/worms, and I doubt it's just me, as this was an MD/researcher Hulda Clark who suggested it based on her research. She said that these three foods contain substances in them which feed the parasites/worms and help them grow. It is true that many will suggest garlic, or at least garlic extract, for treatment of parasites/worms. Perhaps the extracts can help, if they don't have the particular substances that help the parasites/worms. I wish I knew the answer to that. But, really, I have used the garlic in the past and I didn't notice it helping, and avoiding these things has helped so much, so that's how I've been handling it. I am pretty strict about it 6.5 days a week, and then on Fridays we eat dinner at a restaurant and I eat whatever I want, even with onions/garlic/mustard. So, there is an in-between stage between complete avoidance that can also be helpful.

Yes, Ann Corson's was excellent. There are actually many more presentations available via CD (not DVD, no pictures), and many are quite good. I'm still going through them.

I have used some of the bioresource products. I have used their Gamma Rizole and Zeta Rizole for parasites/worms and they were much better for me than other formulations of these "Hulda Clark" style herbs. I also use the chlorella they sell. Years ago, I knew someone who could test substances for mercury, and ran across the fact that basically all chlorella on the market at that time had extremely high doses or mercury, to the point that dissolving some chlorella in water and then exposing the water-chlorella mixture to air would quickly result in a situation where the air has mercury far in excess of what is permitted for workplaces based on U.S. federal regulations, which, by the way, permit higher levels than do a number of countries in Europe. My decision at the time was to never use chlorella. Now, I do not have access to that type of mercury testing. I hear there is some relationship between Bioresource and Dr. Klinghardt, perhaps they stock items that Dr. K. recommends, whatever the case, knowing about that relationship makes me feel good enough about using their chlorella. Of course, I do have access to energy testing, and that also makes me feel a little better about using it (must admit, I still occasionally wonder about the mercury). They do have a number of other products. One is a homeopathic to help your body "make peace" with the bugs, which I am considering taking once I am symptom free.

dabel, Yes, well said, right on. As to your son and your concerns about him not wanting treatment, particularly if he gets worse, sounds like a tough situation indeed. Not everyone gets really horrible at the beginning of treatment. For me, I was more tired and had some headaches, but it was not terrible. Everyone is different. Here's hoping it's not too bad for him, and maybe he'll at least notice something good going on for him there. I do think that the other support activities people can do, can make a difference in how much herxing goes on. With everything, besides compliance, time and money are factors also, so I will just toss out some ideas that could potentially help, if not overly difficult to execute. - something for detoxing/cleansing body--sarsaparilla, red root, stephania, chlorella (be careful with brand), cholestryamine, activated charcoal--there are many choices, this is not a complete list - mineral support, particularly chromium and zinc and magnesium and calcium, but others are important too, extra important if using binders for detoxing, but important even just with abx, because the dead bugs feed the yeast, and minerals help negate some of the bad effects of yeast - of course probiotics, with any antibiotics - oxygen concentrator is something I used for a couple months, 2 hours a day, before starting lyme treatment, before I knew I had lyme, it was gentle and helped a lot, don't know, but I bet for many this would be a nice easy gentle way to begin treatment, and would result in less herxing once the serious abx are started - treatment for parasites/worms, can be herbs, Rx, and even avoiding onions/garlic/mustard helps, though does require significant diet change for most as these things are everywhere - acupuncture can help things flow through the body better Anyway, just some ideas, but mainly wanted to say I'm pulling for ya'all.

I came to the lyme diagnosis from a Tourette's diagnosis via PANDAS. I had a high Cam-K, like 186 or something like that. From a TS standpoint, it was primarily OCD and anxiety, with some tics, but very few. So in a way OCD was the majority symptoms, but that was until all the other symptoms I was ignoring or explaining away as something else are considered--intermittent and moving joint pain, sensitivity to fluorescent lights and wireless signals, chronic fatigue, GERD and other digestive issues. There really are many "little" symptoms that we can ignore and live with. Regarding the OCD, yes, absolutely, it is much improved for me during/from treatment, as are the other symptoms. I am still treating, not 100% at this point.

I have taken lomatium dissectum, and many other herbs, and I just have trouble believing they would have much of an affect on a lyme test. It's not going to completely obliterate the lyme to the point that the body would not be making antibodies, which is what is measured on the western blot test, and I believe ELISA too. The CD57 is different, it measures natural killer cells that particularly help fight lyme. While herbs may strengthen the body a little throughout the fight, and perhaps affect the results slightly, I would be surprised if it could totally mess up the results. IVIG would certainly mess up the results, as it is introducing the blood of at least 1,000 people into the body. So the test will be measuring some combination of everybody. Eventually, most may wear off, over perhaps 1-3 months time. People have posted what their doctor has said regarding how long it will take, that's kind of my memory of the range, as not all doctors said the same thing.

There are a couple/few reasons why treating parasites first makes sense. Long-term abx use can have its downside and be tough on the body. In that sense, if the patient can to wait, it's great to do a variety of other supportive things before going at the abx, because it can minimize the time you'll need to be on abx. And, if the parasites/worms really are farming and protecting the lyme, removing the farmers and other things like heavy metals and biofilm will make the abx all that much more effective. My experience also was that, I started with abx, didn't know anything about parasites/worms at the time, and abx killed a lot of things which made it easy for the parasite/worm problem to become much worse. So, parasites/worms first is just a good order. But, given that you've started abx already, I don't see that a few days or a week would necessarily make a huge difference. If you've got an appointment coming up to really figure out what makes sense, I think the bigger thing for zith and any other current treatments is, just managing the situation with symptoms and school, what will be easier. If the zith is doing okay, helping, probably better to just keep at it. If the zith is causing real problems that aren't just good-ol-fashioned-tolerable-herxing, maybe stop as they are problems that don't come with any benefit. Those are my thoughts anyway.

I also had not heard of it for liver support. I used it successfully for mood support. I have used milk thistle for liver support.

I will second that it just looks like a lot of charcoal. I'm the one that likes to energy test everything before giving it, ask the body what it needs, and if you could get access to that, I think it would really help you. If not, going by the reaction is important. So I'm split between saying, if that much charcoal helps, okay, and, gosh, it just seems like a lot of charcoal. Probiotics are really not supposed to cause what you are describing in terms of insomnia. So, if you really think it is causing that, I would encourage you to experiment with a different brand or two of probiotics. If you are going to continue charcoal, any level of charcoal, I would really encourage you to consider adding some minerals into the mix. As S&S said, the charcoal can really wipe things out, and a lack of minerals in combination with use of antibiotics (and therefore yeast) can absolutely cause significant symptoms and behaviors. When I recently added an antibiotic, it started making my dreams more vivid and unpleasant, and, to some extent, sleep issues during treatment may just need to be lived with. They can be managed some, like everything, with good detox and probiotics. I know you're trying to do that, and encourage you to keep at it, but it just looks like you need to tweak something here, maybe that can help reduce the side effects from where you are now. Michael

oh my, hilarious indeed! (sorry for anyone experiencing anything close to that!)

Thank you very much for posting this. I have heard for quite a while that often with chronic lyme, the parasites/worms are a real part of the problem to deal with. Perhaps this explains why it is so important to deal with this issue, and another good reason to start on worms FIRST, before abx, as Dr. Klinghardt suggests in his slides/talks. I started on abx first, not knowing about the parasites/worms at that time, and while it helped me a lot, helped me keep my job, I do think it resulted in the parasites/worms becoming even more of a problem to deal with later.

ART is autonomic response testing, which falls in the generic category of "energy testing" (aka "muscle testing"). It is a ways of putting substances near your body and seeing how your body reacts, with muscles becoming strong or weak. It can be used to determine if supplements or drugs are good for you, and also if you have certain infections. It is much more reliable than most blood tests for lyme. It is much more popular in the "alternative" non-MD community, but some MD's are coming along to it lately.

I live in Tampa and there is a local LLMD in Tampa. I also have had contact with someone in the Jacksonville area who has an LL-health-care-practitioner fairly local to that area. I am happy to share what information I can about my doc, PM or possibly email only, not a public post, or try to help locate the other one if they might be interested in that. Be aware, other steps you can take, if you haven't done them already, are: -1- sending an email to ILADS (from their "contact us" on their website) asking for LL-docs near the areas (they will give you the names, but of course no flavor of what the doc is like) -2- the lymenet message board is more populated, and has a "looking for a doctor" forum

sounds a little more like panic attack to me rather than rage

Any variety of sleep problems in itself, even without treatment, is a common symptom of lyme disease. But, I have had additional sleep issues pop up during the initial stages of taking drugs. It just happened again when ketek (intracellular abx) was added about a few days ago. For me, the dreams have been particularly disturbing, nobody's watching me, so I don't know about movement in sleep, but to me they both sound like generally disturbed sleep.