MichaelTampa

Glad it helped your daughter hearing from someone else about the yeast and carbs. Her strong will is going to come in very handy to actually execute a low-carb diet, if she's like most, it can be very tough to do it, but rewarding in the end. Good news is it doesn't have to be forever. Interesting comment on the protein, and I haven't heard much talk about that anywhere. As a vegan, I'm probably low on the protein scale, and that was doing fine for almost a year of treatment, but just a couple months ago, my need for protein just dramatically increased. All my body wanted was the junk foods made from soy/gluten that are high in protein, extra hemp protein powder, and all the supplements that have amino acids--cysteine (NAC), methionine (SAMe), proline and lysine (good for tissue repair), spirulina (betacarotene but also high in quality protein). It has since calmed down some, but was amazing to see a wave like that come on. I took as a good sign that body was in repair mode with some bug fighting out of the way, but who really knows...

Yes, I know, it was crazy, in the very first couple days, I just took that amount with meals and bedtime, and I was totally out of control in terms of blood sugar. Taking it more frequently made all the difference. I even did this in the middle of the night, I wasn't sleeping that well anyway, not like I needed an alarm clock to wake up to do it. The amount I have needed has slowly gone down over time.

It can be tough to know, for sure. If you have access to energy testing quantities of these things, I really think that's the best way to find out. At the beginning of my treatment, I needed about 100-150 billion probiotics every 3-4 hours, so more might be needed, but everyone is different. 1 diflucan a week doesn't sound like it would have much impact to me, if it's needed, it's likely going to be needed daily. I also took extremely high doses of nystatin at the beginning of treatment. Extreme hunger and carb/bread/spaghetti craving is the biggest clue I know of that yeast is a problem rather than "just regular herxing". Avoiding these foods can also be helpful, but difficult for most.

Wow, yep, quite a "party" going on there. Yikes! Hope your doc has a good breakfast tomorrow!!! Would suggest talking with doc about plan to make sure enough of you are functioning well enough during treatment to keep the family going. So much of what happens will be unexpected, but still a good discussion point I think.

Amazing discovery just before dinner tonight. I use the Byron White herbals A-L (for borrelia), A-Bart (for bartonella), and have A-Bab (for babesia) on hand but rarely use it. I occasionally test for 1 drop of A-Bab, similar to Enula in terms of just 1 drop every few days here and there. (Testing refers to using my pendulum for "energy testing", asking what my body wants.) I assume it is just treating the few remains of worms/parasites that I have treated seriously in the past. Enula and A-Bab can generally treat worms/parasites, but also babesia, which is a blood parasite. But, besides when I took it out of the box, I haven't tested A-Bab for with meals, or higher amounts. So giving this babesia theory more of a serious look, I tested A-Bab for with dinner, 1 drop was noncommittal, 2 drops was no, but then 10 drops was strong yes and ultimate result was 13 drops. So, looks like doc is right, time to go after the babesia! (Normal dose for these Byron Whites is 15 drops twice a day, but you're supposed to work up slowly.) Yes, I hear the babesia treatment can be brutal. My herxing has so far been very mild with the lyme and bartonella treatment. Maybe I will finally get to really experience the hubbub this time, who knows. Looks like I'll be starting with the serious Rx for babesia right at time of the seminar, we'll see how all that turns out! Having dealt with a lot of the lyme and bartonella and a week of the A-Bab should help a lot, I am thinking positively about that right now. Really have very little in the way of babesia symptoms, just surprising he thought to try this, surprising that this would be it, but experience with A-Bab tonight makes me hopeful. We have been doing things to improve the mold situation in our home before testing, doing the things we know we will do regardless. Since the tests are expensive, not going to test until we're done with that. Amazingly, with all the problems I had during the trip, slept on flat bed without acid reflux all 4 days, not at all like it is normally for me, normally getting acid reflux. While I was gone, we had our bathroom all cleaned up with a lot of moldy items (tub/tile/...) thrown out, and now this acid reflux isn't a problem at home either, so that really could have been mold related. This was the master bathroom, so it's relatively close to the bed. Getting tile to replace carpeting in bedroom tomorrow. Next up is new A/C ducts and clean the air conditioner unit itself. Lots of things to deal with! Thanks for the offer Julia! Don't know what would come up, but nice to know someone might be there to help if I need it. Wendy, I'm trying to head in the direction of helping others locally, so will definitely be taking lots of notes and look forward to giving ya'all a good summary.

This depends entirely on the doctor and what else the doc sees in the big picture (symptoms, family members test results/diagnoses/etc). If the doc is most familiar with PANDAS, and thinks just band 41 means it can't be lyme, and they see PANDAS-like symptoms, they may give a PANDAS-like treatment (antibiotics, perhaps IVIG, ...). If the doc is most familiar with lyme, and they see lyme symptoms, they would very likely be given lyme treatment. Months ago I ran across an article on the internet giving one such lyme docs opinion saying, basically, he knows if he treats the band-41-only people who have lyme symptoms as if they have lyme, 90% get well, so he is less concerned about whether lyme is the cause and more concerned about the result for the patient. An experienced lyme doc will also have seen plenty of western blot re-tests following treatment where more bands show up positive, so that will be in the back of their mind as well. All docs are going to do what makes sense to them in their experience, and so the actual treatment for those with such an inconclusive test result (band-41-only) is naturally going to vary quite a bit by the doctor.

For those interested, we are about to shift gears in my treatment. For the last few months, I have been close to done, but not done, and improvement has been very slow. LLMD concludes today this is not doing it, time to look for something else and try something else. We have been treating lyme and bartonella, going now to try to treat babesia. In a lot of ways it looks like I do not have babesia, but it's time to try something new and this was the first thing he wanted to try. First a week of antifungals and then babesia treatment of clindamycin and malarone (come in pills with 250mg atovaquone and 100mg proguanil HCl). Burrascano's guidelines talk about dosing malarone that contains 750mg atovaquone twice per day, here starting with 250mg atovaqune twice per day. Curious what others have been using and body weights. I weigh 140. A recent business trip to Las Vegas did set me back some, and I know the EMF exposure was big, and also needed to take much higher doses of the Byron White herbs for lyme and bartonella. Another theory for what is holding me back is the constant EMF exposure I get at work 5 days a week, 8 hours a day, just gives the bugs too much growth to really do much to them. Who knows. Time to start thinking of what else to do. I might've thought we'd try different bartonella drugs, like levaquin or rifampin (currently had been taking factive). Hoping I can make it through another trip with planes and hotels with wireless, as I am going to the Klinghardt lyme seminar in Seattle that starts May 6.

Gosh, that's great, but yes, now it's short notice. Hopefully whatever various blood and other test results you have, bringing copies of them might help a lot.

How wonderful to hear the continued success you're having with homeopathy! As you know, I also went to Miranda for myself. I have had a few doses here and there. She is being very cautious with me (don't know if it's me or if that's just her way with everybody). In any event, I can tell it has some effect, but I don't think it has been very long lasting at all for me.

I have an article at home on a study of prevalence of these in the population. It was something like 40% of the general population positive for band 41, and about 80% for those diagnosed with lyme. It is on this basis that band 41 is frequently considered the LEAST specific band for indicating lyme. For example, contrast with band 39, where the difference is much more dramatic ... going from more vague memory here, but the general population was something like 2%-5% positive for band 39 whereas those diagnosed with lyme were something like 80%-90% positive for band 39. I think this study had only like 850 people in the general population category, and did not discuss geographical or other stratifications, which I think could be important. So, since 850 is such a small number and there was no discussion on what steps the took or did not take to make it representative, the numbers need to be looked at with a bit of "grain of salt", but, it's really the only data I've ever seen in this category.

wow -- stunning. thanks michael for posting. i haven't heard of shoemaker. would you mind elaborating on how you are using that website/info in your treatment? i moved to the chesapeake bay area in 1999 -- i remember the pfisteria issues. ds6 and i have infections diagnosed thru a type of ART that we 'shouldn't' have -- one is toxoplasma gondii -- i lived with cats for a less than a year long ago in my whole life. it could be through dirt, etc. i've often wondered if there's a connection having walked/swum in the bay -- could certainly be a source of infection. i'd certainly be interested in hearing more from those who know of shoemaker and his diagnostics and treatment. thanks. I think his website has a bit of information on it about lyme and neurotoxins, don't know how much of it I've read or how interesting it is, it's kind of been a while since I poked around there. What I have done on the website is simply take the visual/eye test they have. It basically involves having your eyes something like 12 or 20 inches away from a computer screen, cover one eye, and try to see which way lines are pointed in a little box on the screen. It goes from easy to difficult, and his theory is that neurotoxins affect how clearly things can be seen, and he believes this type of eyesight is affected pretty much all the time, making it, in his opinion, a very good way of measuring the effect that neurotoxins are having on you. It is not a "reading/eyesight" test as typically done. For example, if you need glasses/contacts to have 20/20 vision at that distance, then you are supposed to have that on for the test. For me, my results went from bad to now pretty good, although I still have neurological symptoms--what precisely that means for me, I'm not sure. The website may also allow you to purchase recommendations for detoxing. I get the impression it is primarily dosing schedules for cholestyramine. Since I had already been taking that, and energy test my own doses of that daily, I did not pursue it, so can't tell you too much about that, other than it appears to be an option out there. I actually heard about Shoemaker and his website and cholestyramine from my LLMD.

Goodness, I guess this illustrates how difficult the mold can be to deal with. We've been working on the mold in our home over the last couple months. More to do. Perhaps nothing was serious, but since we were going to be cleaning things up and replacing others regardless, figured we'd do that work before spending money on testing. Not familiar with MARCONS. Dr. Shoemaker is good. His chronicneurotoxins website has a $15 eye test on a computer to show what affect neurotoxins are having on the body. I have seen my score improve significantly through treatment. It's another measurement to see where you are and where you're headed over time. Regarding the mold, sometimes cleaning the A/C and/or the vents is important. I know sometimes people end up getting things sprayed in there. Our pipes or tubes or whatever they are called are very old with many holes, so we will not be cleaning them, just replacing them. As I said, still working on this, but that's another thing for you to consider if you haven't checked that out. Don't know what the spraying stuff is, just heard it is used sometimes in these situations.

Yes, as Tammy has said, IVIG is used sometimes for lyme, is used sometimes for PANDAS, and others, so perhaps it will be helpful regardless of what is going on. Regarding testing, IVIG does come from blood of others, so if you are contemplating testing for any infections, wise to get that done before IVIG if you can work it out that way. Any testing you do after IVIG, you won't be sure if it is from the IVIG that is causing the results. Sorry things are so tough.

I am sure Dr. T. is well meaning, I remember his time on the board, but just for those newbies to the considering lyme, he is looking at lyme in a way that most experts in treating lyme would not look at it. He is basically concluding that the western blots are effective tests because he hasn't seen it give a negative on someone with an EM, but what about all the people who have lyme and no EM rash? It seems he thinks these people don't exist, or perhaps they have all been misdiagnosed. Plenty get the rash after they start treatment, some never get it, but still get better from lyme treatment. He really could be right, all these other cases as not lyme at all, perhaps many have been misdiagnosed with lyme and then gotten better from lyme treatment. In the end there is absolutely no way of proving that anyone, even someone who has lyme symptoms improve with lyme treatment, even someone where borrelia has been extracted from their body, is/was actually suffering from lyme disease. All of symptoms could be from something completely different, it could be a coincidence, really, so true. And maybe someday he will find what that other something is, and if so this would probably be useful for some people somehow, perhaps leading to better treatments. But for someone focused on getting better, it might just be more important what treatments work for people with various symptoms and blood test results, rather than what proof there is that any particular bug is the true cause. Regarding his comment about lyme rarely if ever being the only trigger in a PANDAS case, I could easily see this being correct. Lyme does a great job of weakening the immune system that the patient will likely have some mycoplasma and strep and viruses available to trigger PANDAS, while lyme also causes increased autoimmunity by rearranging DNA. In the end, for a disease so misunderstood like lyme, it is dangerous to rely on someone for diagnostic approaches if they are not experienced at treating patients and seeing the results of following through on treatments with various pateints presenting in different ways.

Well the feeding tube (G tube in her tummy) wasn't really a "choice" we made per se. It is her sole source of nutrition-she does not eat any foods orally. Her meds are already administered through the tube. Her esophagus is swelling shut due to an autoimmune reaction to foods. The tube has been in place since February so that we could remove all foods and try to turn off the autoimmune reaction. We return to Cincinnati in May for another Endoscopy. If the path report comes back clean then the tube will stay in place for years while we add back 3-4 foods in their purest form over a 3-4 month period and then rescope. According to her GI most kiddos only find one safe food out of the 3-4. It is a very long process. If the scope does not come back clean then our next step is swallowed steriods for life to help with the inflammation. This sucks because we will only be putting a bandaid on the problem rather than solving it. We hope to avoid the steriod route at all costs. Swallowed steriods means that you take the medicine from inhalers and mix it with splenda to make a slurry and then swallow it. You want it thick so it will coat the esophagus. NASTY! http://www.apfed.org/ LLM-So in response to your comment about diet and probiotics....No she is not on a special diet for inflammation, probiotics etc because she cannot eat food. Supplements also present problems because if I can find one that is safe it will have to be trailed. She also has 15 IgE food allergies including dairy, soy, gluten and pork. Pork is very important because pork=gelatin=gel caps which means no pills. Also products like glycerol, magnesium stearate, mono & di glycerides are pork derived. We have to have Tylenol compounded. Her therapist has suggested breathing exercises, games to redirect her brain, petting the animals etc... IF we can get her to do them they work. Unfortunately for us there is no gradual build up before she explodes. It is literally like a switch flips in her head and once that happens there is no stopping her until she is done. Iowadawn-Hi! Yes our appt is with the same physician in Grinnell. My goodness, what a terrible situation! I want to let you know there are other ways of dealing with these allergies. There is therapy called "Allergie-Immun" that a number of people with lyme are using. It helps the body deal with autoimmunity issues by changing the person's DNA so that they recognize items for what they are--recognize food as food as heavy metals as heavy metals. Then the body stops fighting the food and starts removing the heavy metals. So it helps a lot with detox and food allergies. On the lymenet message board, there is an extremely long thread--you could probably not read it in a full week if that is all you did. Anyway, there is a lot of information there but I am just giving you the basics here of what it does. Many who try it are having very good results. It has been very helpful for me. This Allergie-Immun place is in Germany, their website does have an english version. The cost is 450 euros, plus 10 euros for each bottle of drops that is needed. It works as follows. You send a saliva sample to them along with payment, and they send a bottle of liquid and a report on "DNA errors" they found. You take the drops 3 times a day for two weeks, then send back another saliva sample, and the cycle repeats until they find no more errors. It turns out to be about one bottle a month due to time it takes to ship back and forth from Germany. I have found this very helpful, gave it a bit of a plug earlier. I am trying not to continuously push this somewhat bizarre sounding and somewhat expensive treatment. But, after hearing your daughter's food situation, feel like it's important you at least know about this so you might consider it. I think it is particularly helpful for those with lyme because, moreso than other infections, lyme really messes with your DNA, reorganizes it to its benefit and the person's detriment.

Just a head's up on liquid abx - personal experience is that they tend to be about twice the cost of pills. Because of my kids' weights, the only way to get certain doses of abx into them is to use liquid, even tho they both prefer pills. The cost of the liquids is killing us! Tinidazole (generic of tindamax) and fluconazole (generic of diflucan) have been notable exceptions to this, at least for me at the compounding pharmacy I go to. The generic liquids were much cheaper.

Regarding the mold, the more you can do to reduce exposure, the better. Perhaps that means trying to keep the humidity and dust levels down. But, if you think she may be reacting to mold, there are things that can be taken to really help by binding with the toxins which helps eliminate them from the body. On the prescription side of things, cholestyramine is the drug of choice. It comes with sugars and/or fake sugars and other junk, what a shame, I get it at a compounding pharmacy so I can get it without those things. On the OTC side of things, chlorella can be very helpful as well. These are said to be very good against the mold neurotoxins, but also act against other things that might need elimination. P.S. Bumped a few other old topics that might help you as well.

Bumping up for ShaesMom. I haven't re-read the other threads I have just bumped up, don't know how much parasites are covered in them, but parasites and the Dr. Klinghardt's protocol (primarly non-antibiotics) are topics on their own. Treating parasites is an excellent first step, there are some excellent herbals for this as a good place to start. Eventually prescription antihelminthics can help as well. Dr. Klinghardt has entire protocols, if you can find them on the web. I have some on pdf, so don't know how to post them here, but could send them to anyone interested. They are probably dated now, as his techniques evolve, but a lot of good ideas. Another thing you can look at is Dr. Burrascano's "Treatment/Diagnosis Guidelines/Hints" from the ILADS website. There are a lot of supplement recommendations there. Looking for sensitivity to fluorescent lights and wireless devices and EMF's is another thing to really consider. Some of this can be hard to evaluate if people are exposed all the time, and if you are dealing with rages, you might try getting rid of as much of this stuff as you can, or at least turning it off when possible. Sleeptime is particularly important. Circuit breakers can be turned off for the bedroom at night. Fluorescent lights can be replaced with incandescants. Land-based phones still work. Remember that cordless phones work on the same principle as cellphones and are no better. Routers for internet can also run on wires, we had the wireless aspect of our Verizon router turned off. I know personally that exposure to these things can cause rages for those with lyme, not everyone for sure but something to think about.

The lyme disease proper comes from borrelia, and the ehrlichia is a different but. For sure, it is possible to get ehrlichia from a tick bite without getting the borrelia. Not necessarily likely, but of course, it can happen, all depends on that one tick that gave the bite had inside it. I haven't studied the ehrlichia so much, hasn't been an issue for me, but I thought that was a bit more common to get from whatever bugs/ticks hang out with horses. So perhaps in that venue, it would be easier to get ehrlichia without borrelia. What I thought I read on the bands, IND versus positive, is they are actually reading lines/bands on a piece of paper, there are no numbers available, but the chemicals/proteins/antibodies/whatever end up making marks on a paper, and if there is nothing there for band 39 it is IND, and if there is a line "so thick" by band 39, then it is single positive (double thick is double positive, ...), and if it looks like there is some line there, not nothing but not thick enough to be what has been defined as single positive, then it gets IND.

Kind of along the lines of what pandas16 is saying, yes a lot of diagnoses. I have had many of them too. Each doc that specializes in the particular one will want to treat it, and they'll have drugs they think will work. Treatment of the overall condition (lyme, for example, if that is at the heart of it for you) will very likely take care of many if not all of these problems. People I know are amazed to hear of how many different things have been treated with the lyme treatment. Just not sure where you're headed with the different docs and treatments. Even if they are fixed with lyme, it can be useful or even critical to deal with them symptomwise in the meantime. For example, if you really need to get through the day, or you really need to avoid seizures (they can be dangerous), and so on, this is where treating the symptoms can have a lot of value. Anyway, you and your docs may be fully aware of all this, but I guess that's what I am just trying to make sure you have an eye on. I think sometimes it is easier for the patients to understand this, but quite hard for the specialty docs to really believe it. Anyway, sorry you're struggling, I have had really bad memory problems too, I know it can be frustrating, wishing you well. Michael

This can be connected with lyme. I have had a lot of itching over the years, it is much better with lyme treatment. During treatment I have had some spiking of the itching (presume "herx"). I have heard this itching is actually neurologically related, as opposed to there actually being something on the skin. I also have sometimes felt things on the skin sometimes that were not really there.

A couple other things you might try, anyway: - NAC (n-acetyl cysteine) - I think some Buhner herbs may help support detox process, red root is one of them you might try (if you have his book, you might look through it with particular coinfections/symptoms in mind)

If it happens on non-school days, and food doesn't seem to affect it, it does make me then wonder about detox support. Are you taking anything to help bind toxins--cholestyramine (prescription), apple/grapefruit pectin, chlorella, clay, activated charcoal? Besides binders, there are a variety of nutritional items that can help the body function better, including with detox. Glutathione is something your body makes and it performs the detox, but your body needs 4 amino acids to make it--cysteine is most commonly the limiting factor for many, and particularly for vegetarians that is more likely. NAC (n-acetyl cysteine) is a supplement that can help with that. There are many other vitamins, minerals, and proteins that can help also, and Burrascano's "Treatment guidelines" on ILADS website is one good source for that. If you can't figure it out soon, would strongly suggest letting the doc now is probably a good idea too.

It sure can be candida from the killing. When I first started treatment, I needed something like 100-150 billion units of probiotics every 3-4 hours to keep things manageable. I even got up in the middle of the night to do that, as I wasn't sleeping well anyway and it helped. It has calmed down in terms of probiotic needs just very gradually. It is a year later, there was a several month treatment break in there, and I am probably taking something like 40-50 billion a day now, with even more antibiotics than initially.

Thanks, that's a good one.