MichaelTampa

I am familiar with some of those, but not all. I have taken lots of supplements over time, some of the ones listed, and they really help quite a lot, absolutely. But not every supplement on somebody's standard list is going to help everybody. It is a bit individualized. This is why I think having the skill of "energy testing" each supplement is so important. It can save lots of time and money and other problems when you avoid taking something that won't help or is even bad for you. The vitamin D3 is of course really a hormone and I do recommend being careful with it, as I would with any hormone. It can help your body fight the lyme, and it can also be used by the lyme to fight your body. No textbooks are out there right now that can tell you if it will help or harm your situation. Probiotics, of some form, is something most people will almost certainly want/need when they are taking long-term antibiotics. Nystatin (a prescription antifungal) can also be very helpful there. I have read a bit about cat's claw, and there are certainly mixed thoughts on this. Pure whole cat's claw comes with chemicals called TOA's that some say should be taken out cause they can be disruptive, so there is TOA-free cat's claw out there. Then Buhner (the lyme herb guy) recommends whole cat's claw, as that is admittedly his bias for all herbs is the whole herb. My experience puts me down more on the TOA-free side, I energy tested better for it that way, but I really never used it much either way, it didn't do much for me. That's just my experience. By the way, there are also reports that use of cat's claw can make future use of fluoroquinolones much less effective, as the bugs can adapt to it. Fluoroquinolones like levaquin and factive are used for bartonella, the coinfection frequently involved with PANDAS-like neurological-like lyme symptoms. Last I read, these fluoroquinolones are not recommended for kids. They can cause tendon damage, and perhaps that's the reason, but I have not heard the reason.

Interesting hearing about the cough. I have had that come and go, it seems to have come back more as I started on some new drugs. It is very frequently while eating and not much other times. For others, is it frequently while eating, or just all the time?

I have done this a number of times. I do feel it helps, how much is hard to say. It really depends on the situation, what you are sensitive to. I know with the severe yeast infection, the drugs with the sugars in them just seemed crazy. There are so many crazy things in some of the regular pills. My insurance covers 90% of regular drugs, and only 50% of the compounded medications. However, sometimes the compounded medications are still cheaper. Fluconazole, when marketed as pills (called diflucan) has an enormous mark-up in the price, such that it is just way cheaper to get it compounded, at least for me, because the compounding pharmacy works on its own pricing system, buys the pure meds not the pills. My experience has been that I've had to call around from the phone book to a few compounding pharmacies, and then eventually, they refer you to other compounding pharmacies that may be able to help for things they can't make, and so on. Over time I learned which pharmacy can do which drug.

This is very lyme indicative if lyme symptoms are present, which I would think very likely the case for someone with PANDAS. It says negative because they are just giving the result the CDC wants for "objective" tracking purposes, that overall negative is not meant to be suggestive of an actual diagnosis.

I have done this for the last couple/few years as my medical expenses absolutely skyrocketed. The cutoff is 7.5% of adjusted gross income (gross income after some adjustments on form 1040). Most painful was seeing the money spent for a whole year, second most painful is all the time spent organizing it and adding it up and all that. If anyone is looking to do this and leery of going to an accountant, due to the money or whatever other reason, I probably could at least some guidance, as I have been through it a few times.

Sounds great! This is one where I really hope it gets recorded for others (such as me) to purchase and listen to.

It can hang out for years if the immune system isn't strong enough to get rid of it. Sometimes it is called "walking pneumonia". Heard on an ILADS conference CD last night, Burrascano, saying the stuff is just everywhere, the labs can't even test for it because they can't get a clean lab where the samples would not get infected from the lab itself. This really sets back testing and understanding of how to treat, but he feels best way is to treat the borrelia and then eventually the immune system gets strong enough to take care of it.

All of these ranges on all of the various blood tests, keep in mind they are just made by some number-crunchers looking at ranges of what is typically seen. It is not good to assume that inside the range is healthy and outside the range is unhealthy, and everyone's view of healthy is different anyway. Things I have heard about the numbers, from people who focus on lyme disease: - when a score increases to 100 or more following treatment, it is a good sign that you may not relapse if you stop treatment, versus lower may indicate likelihood of relapse (I personally stopped treatment below 100, saw it go up the next month, but then way way down the following month, so it can lag as the buggies may take time to grow and weaken you) - a score of around 200 is more an indication of being healthy, at least with respect to lyme - a score below 60 may indicate you also have mycoplasma pneumonia - a score below 60 indicates you are particularly struggling healthwise

I have one that I used a few times a week back at the beginning of my lyme treatment. It contributed to the treatment. I think I spent like $300 on it.

A few thoughts: As others have said, all these nutrients do work in combination, and so it is important to look at the relationships between things. I see 400mg of calcium and perhaps very little magnesium, as it looks like an add-on to a 5HTP pill. It is very easy to find supplements with calcium and magnesium together in what is thought to be a proper combination for most people, such as 400mg calcium and 600mg magnesium. Magnesium is critical, and so adding calcium without magnesium would only make sense if you had a specific knowledge that this is what your body needed. Muscle testing / energy testing can be so useful here in figuring out what your body wants and will react badly too. It's not all just about the numbers, some people will do great with some brands and worse with other brands. If I remember, you have severe gluten allergy, so think about all the machinery and fillers and so on that go into making these things, and realize some will just have something that your body will react to poorly. I would encourage you to find someone who can teach it to you, ideally, or less ideally, test your supplements for you for the time being. The thing is, your needs will change over time, so you will need to adjust somehow. Are you seriously taking 65mg of iron a day?!?!?! OMG! I think the USRDA is like 15mg for women. Yikes, is there a reason you went so high? You could be poisoning yourself! If you're really taking calcium and magnesium, you might consider adding zinc, because that relationship is important. But then, with zinc, you might also consider adding copper because the zinc/copper relationship is important. Copper is frequently more beneficially taken at night. It all gets back to what pricilla was saying, and perhaps you should look for something more complete, as one option, or another option is to work with a mix of other ones to fill in some gaps. I hope this was more helpful than confusing...

JuliaFaith, I'm wondering if you can help me with some more information regarding the parasites. I started lyme treatment with abx, before anything for parasites, and I really think it helped my parasite problem get much worse. I am now working on parasites with Gamma Rizole and Zeta Rizole, something I saw from a Klinghardt presentation, that he recommended that for a couple/few months followed by 2 days of biltricide to finish it off. I feel like I'm getting closer to being ready to try the biltricide, but still not quite ready yet. Your comment is scary if it needs to be done that precisely with all those follow-up drugs for the parasites. I just got 1 day's worth of biltricide for the parasites right now, it might be difficult to convince my current docs to give me the whole protocol of all those drugs. Is that protocol something that is published somewhere (internet, paper, anything) that I could reference and show my doc? Is this just what your doc or Klinghardt said in a conversation? Any idea why you only get one chance and what happens if you mess it up?

For me the lyme treatment absolutely has helped, and I have correlated it with anxiety and feelings of stress. It is a little chicken-and-egg question. Maybe the lyme causes anxiety which causes the need to urinate, or maybe the lyme just causes both, but I have seen it all correlate together.

I have some interesting experiences with rife and EMF's as well. I was disabled from work for a few months when my employer installed a wireless router, it caused short-term memory problems to the point that I could not have a real conversation. I have got treatment and GiaWellness home harmonizer and pendant and they helped a lot. I have heard good things about the EarthCalm technology as well, though have not used it yet. They may well be different technology and could be helpful in different ways. For anyone having problems, I do encourage trying these things, and not giving up after the first one if it does not help, as not all of these devices use the same technology so results will vary, and of course everyone has different issues and needs. I have found the rife machine somewhat helpful, but not enormously helpful. Before I got the home harmonizer, I could only stand about 20-30 seconds at any given frequency for any given usage. After I got the home harmonizer, I can handle it for minutes at a time. A good reminder that rife machines produce EMF's too, and it's not just the bugs that might be sensitive to them! Still, my use of the machine has really tailed off because of the time and energy it took to use it, compared to the free time I had, and the benefit was much less than other things I could do to help (oxygen concentrator, pills, far infrared sauna, massage, ...). For a couple months though, it was a decent helper in my total treatment. There are some that have gotten enormous benefit from the rife machines, so I do think it is something you'll have to try to judge for yourself. I do think you most people will need to go at the lyme from multiple ways, not just one approach, to get to where they want to go.

Glad to hear things are at least moving along for you!

1. I think that's the best way to start. That's the basics, doing more can easily be overboard, just not necessary with so many false negatives. 2. I wouldn't worry too much about that, I don't think those things will have much or any effect on what these tests actually measure. The tests aren't looking for the lyme bug itself.

I'm glad you're looking to get this checked. If I haven't already said so, yes, I do see a lot of clues pointing in that direction for you. I noticed a few similaries in our stories that seem interesting. I have had intermittent bouts of mild depression, here and there, in the 20's and 30's. In 2006, I got PTSD from a near-drowning, and that began a big huge spiral downward of my health, including severe depression and anxiety and chronic fatigue. Because it all seemed to be caused by the PTSD event, we all tried to treat it as a psychological issue, with therapy (that was necessary and very helpful but not curative) and SSRI's (that caused horrific bipolar reaction, so that was stopped). Of course, it was lyme, and we eventually got to that, but I was diagnosed with Tourette's first. During that period, I read that it is a common problem for those with Tourette's, people don't take the new symptoms seriously because the symptoms frequently pop up after a traumatic life event, and so the life event and the perons's reaction to it is seen as the cause, and nobody looks further for an underlying cause. There is a very excellent book by Martin Pall, "Explaining Unexplained Illness", and he talks a lot about methylation and its key role in things, as he talks mainly about the nitric oxide cycle. He actually proposes an over-the-top nitric oxide cycle as a new category of disease (the current accepted list has, I think 9 categories, one of which is "infections"), and that may be true or not, but it is interesting reading about how PTSD causes very similar chemical responses as those seen in people with chronic fatigue, and it is enlightening to realize how talk therapy and SSRI's are just not going to get you anywhere until you address the nitric oxide cycle. In the book he lists many supplements that can be very helpful in these situations. You will find quite a lot of overlap if you compare them with what people like Burrascano (from ILADS) or Buhner (the lyme herb guy) recommend for lyme. I believe there is some discussion in there on oxygen therapy as well, but he doesn't give it as much credit as others do for dealing with an overactive nitric oxide cycle--it helps a lot! I keep thinking I'll take the time someday to list the treatments I've had over the years and highlight the ones I think that have been really great, and I never get to it, so I'll say now, for me, oxygen therapy is on that short elite list. With lyme disease, low magnesium, insulin resistance/prediabetes, mild thyroid problem, low testosterone, low DHEA, adrenal insufficiency and gut dysbiosis are common, and I had them all as well, and still have most of them. The insulin resistance was the biggest puzzle, as they kept wanting to blame diet but it was just not the case, and I would take it as a big clue in your case as well, whether it's lyme or something else, there's a reason that is happening and it'll be good to track that down eventually. That has finally gone to normal range for me with lyme treatment which is still ongoing. Yes, the 5HTP and SAMe have been very good for me as well, although I haven't needed them for a while, since I have had a lot of types of treatments. Congratulations on making it through all that!

Chlorella really can be a great help with detoxing which can reduce herxing symptoms. But also, it is possible that it can make things worse. I know that in the past I have been very sensitive to beta-carotene, and could not handle hardly any chlorella as it is very high in beta-carotene. Also, most chlorella is highly contaminated with mercury, and so adding mercury to the body can cause lots of problems as well. It is great if you can energy test if his body wants the chlorella and if so, how much. There are also plenty of other products that can help with herxing, similar to chlorella. I don't have a complete list, but some that come to mind are beta-sitosterol, psyllium husk, cholestyramine (a prescription drug), and activated charcoal.

Yikes, a crazy scene indeed! The marshall protocol is a bit of a controversial treatment, I think, probably a bit more risky than a number of other approaches. Not sure that's the best place to start for most, but I understand the frustration of almost finding someone who had promise.

CD57 is a labcorp test (not available through quest). I don't think I have ever heard it described as testing binding immune complexes, not that I know what that is. The LabCorp code for it is HNK1, and I have heard of it described as looking for a certain type of "natural killer" cells, which is where the NK comes from in the HNK1. It is believed that very few infections can depress the CD57 levels (some say borrelia only, some say also myco-p and/or HIV, ...).

Fixit, Glad to see you have located a LLMD with knowledge of PANDAS. As PacificMama said, all the reasons to pursue it are there. That should help tremendously, both with treatment plan, and also probably give you the confidence that the doc is considering different possibilities and situations. Regarding your questions on how can a person get lyme disease, the reality right now is that this knowledge is simply not available--we don't know. Lyme has been found in every human body fluid there is--tears, blood, saliva, sex fluids, and so on. Lyme has been found in mosquitos, in birds, and it is no doubt in other animals as well. And none of this means that we know for sure you can get it transmitted in this way, we don't know that. Until the diagnostic process is MUCH MUCH better than it is now, information on how you can get it will be very far off. How can we determine how someone got it when it's not diagnosed until 40 years later? That is just the reality right now. The book Cure Unknown does give quite a bit of great information for the curious, as our minds do keep asking the questions, even if the answers are unavailable. Regarding yourself and your husband, I do hope you at least bring up that topic with the doctor. Given the unknowns of transmission, you might help yourself a lot to consider that some. Michael

Mine is in Tampa. Not sure if you would consider that close. If you'd like my perspective on him, give me a PM. Also, be aware that ILADS will give referrals to ILADS members if you send them a request.

I am curious what you have heard it can be helpful with. Acupuncture is great for resting the body, tuning it up, making sure the body and its organs and all that have energy flowing in the right way, having things work as best as they can. Before I was diagnosed, I got it twice a week for several months, hoping it would calm down my "Tourette's", as we were looking at it. It really helped with some of my symptoms, calmed down all the reactions to the fluorescent lights and wireless, couldn't have gotten by without it. (Truly, been on disability three times in the last couple years, but when I was working, I needed the acupuncture.) I can't imagine it being a cure for anyone once lyme has really taken hold, but it certainly can support the healing process. I think for so many, once they've had lyme a while, you need to pull out all the stops, so to speak, to really win the battle, and I think acupuncture can be one important aspect to help. If nothing else, for those struggling with herxes, I would very much expect that it would certainly help things flow out better and reduce herxing. I do still get acupuncture every couple/few weeks or so, it's nice, it helps some. For me right now, it's not the biggest thing but it's nice. There are other ways acupuncture can be used, too. Some treatments I have gotten are in the nature of NAET acupuncture, where the body is told not stop being "allergic" to the bugs and instead start trying to kill them and remove them from the body. Again, not necessarily the whole puzzle, but a nice thing to try that hopefully helps.

5HTP was good for me and tryptophan made me absolutely wired and was horrible.

I have experience with the body odor symptom, I would guess it is just detoxing from all the poisons. It can happen even without treatment, that was when it was at its worst in my experience. The body is always detoxing, even for healthy people, but for unhealthy people there is more to detox, and some will come out even without specific efforts from taking pills or whatever.

I have seen some posts on lymenet where people post generic discussions on the western blot, and they have included 58 as diagnostic/specific for lyme as much as the other ones. They're always so hard to find, but I think if you keep googling for lyme western blot interpretations, you'll see it pretty consistently on the list.