MichaelTampa

Just please be aware, in pursuing any lyme testing, that the standard tests are not very effective. Since most doctors don't know enough about lyme disease to know this, anyone pursuing lyme testing is well advised to not just rely on their regular doctor (if not seriously versed on lyme) to select the tests to run and interpret the results.

I like shea butter, which is basically fat from the nuts of the shea tree. I always got really dry skin from traveling up north for the holidays, and nothing I tried worked until this did. I imagine there are many options.

Amy, As you mention remembering a fever in July, not long before these symptoms started creeping up, and you do not believe you have TS in the family. In case you are not already aware, I want to you to be aware of the possibility that these symptoms are sometimes a result of an autoimmune condition called PANDAS (or PITAND more generally), and also sometimes lyme disease. For example, sometimes people do have a fever or flu as they get lyme disease. Of course, a fever could be many other things as well. But, as you noticed the timing, I wanted to point out to you some possibilities for what that could mean. There are separate forums on this site for PANDAS or lyme, in case you want to pursue that more. Dietary improvements can be helpful for many conditions, including TS and PANDAS and lyme. Of course, for PANDAS and lyme, those changes may help things some but would ultimately not be a cure, and so that could be something to keep in mind going forward as well. Michael

Goodness yes, so sorry, so sad... Michael

I believe I have been through some of this as well. To me it feels like a blood sugar issue. Many people were shocked at how much I could eat sometimes, and still be so skinny; this was before I knew what was going on. More recently, I have found that probiotics do help me some for this, during the attack as well as throughout the day to prevent the situation. I do think that, as Stephanie suggested, the yeast are the primary factor here. Another thing that can be critical, though, even if it is just a secondary factor, is minerals. Chromium, zinc, and vanadium, in particular play a vital function in maintenance of blood sugar and insulin and all that fancy chemistry/biology stuff. Binders, such as charcoal, will remove minerals from the body. While these minerals are helpful for many, even if they're not taking binders, with binders, you just need a lot more minerals. With minerals, the balance between all the different ones is so important, so I wouldn't recommend blindly taking just one or two. I take magnesium, calcium, zinc, chromium, vanadium, germanium, selenium, iodine, and copper. The balance between zinc and copper is supposedly quite important, with zinc generally recommended with meals and copper at evening/night. Actually, I ordered some lithium (supposedly to help detox the brain) that should arrive today, and may add that one as well, we'll see.

I have Aetna, not UHC. My plan paid 70% of what they considered reasonable charges, because it considered IGeneX out of network. They ended up paying for about 50% of it.

Yikes, Feb.10 has got to feel like a long way away given the current situation, so sorry! In terms of managing in the short-term, from what you describe, it seems what antibiotics she's on or not on, and perhaps dosage, will make all the difference, and I would focus on doing whatever you can to try to adjust that to a more stable state. I'd suggest you consider that more or less antibiotics might help, either way. If the problem is primarily PANDAS, maybe more or the right drug is what would help most, although I imagine the PANDAS parents have much more knowledge about that than me, as I'm on this board for myself the patient (not a child). Another possibility, particularly if this is lyme related, is the antibiotics are causing a herxheimer reaction, killing too much infection too fast, and maybe backing down to a lower dose would help. In the long-term, if you haven't evaluated lyme as a possible cause, I would suggest it. One prominent lyme doctor (Dr. Klinghardt) believes 90% of autism is actually lyme disease, and since your son is diagnosed with autism, there is a chance that autism is in your family. To get going on that, you might consider western blot and ELISA lyme tests. IGeneX is better than LabCorp, LabCorp is cheaper, so there's a bit of a trade-off there. And also consider the CD57 test (only at LabCorp), some think not useful for kids, others think useful. You can get some information also by testing yourself. Good luck! Michael

There are a lot of non-abx treatments out there. They can certainly help. I think most who are successful with lyme treatment use both abx and a variety of other techniques together. The sense I get is that most cases are just too difficult without pulling out all the stops. Of course, there are exceptions, and everyone is different. I will also second the Buhner book Susan recommended. Here is another book that is excellent. http://www.wellsphere.com/lyme-disease-article/insights-into-lyme-disease-treatment-thirteen-lyme-literate-health-care-practitioners-share-their-healing-strategies/764193 I really would recommend these books for anyone working on lyme disease, as I think alternate treatments beyond abx can help a lot, and for many will be necessary for the success they need. Other non-abx ideas: - there are Byron White herbal formulas as well, I am about to try, don't have them yet, some find them excellent (A-Bart that Wendy mentions is one of them) - oxygen treatments (hyperbaric more costly and more effective), oxygen concentrator cheaper and helpful - rife machine (some find useful, others not as much) - acupuncture, massage, light non-aerobic exercise all good to keep things moving (don't overstress with exercise) - high-dose niacin is a "natural" antibiotic, such as 3000mg per day, have to work up to avoid extremely painful niacin flushes - electrical grounding during sleep (only if you know what you're doing, please don't electricute yourself) - heavy metal detox of some form necessary, with abx or without, FIR sauna can help, Allergie-Immun treatments from Germany are excellent to help get this going, be sure to add binders to help eliminate them rather than moving them around - addressing parasites/worms and/or mold issues also can be very important for some, bear in mind, standard parasite/worm testing technology is worse than lyme testing, not worth the time, I have had good luck with some herbs and avoiding onions/garlic/mustard which feed the worms The picture of someone with adrenal insufficiency to the point of being diagnosed with Addison's disease, negative lyme test results, and believed to be allergic to abx, all fits well into a picture of someone with lyme but just too sick to show it in the tests. Unless your adrenals have been permanently destroyed from your condition, they could recover function if you are able to get the lyme treated. Also, I have heard there are many stories out there where people think they are allergic to antibiotics, but they really are just overwhelmed with infection, and the reaction seen as allergic is actually the Herxeimer reaction. That may not be the case with you, but it sure fits with the adrenal insufficiency and negative test results. Perhaps if you start slow with the non-abx treatments, and work up, you might eventually be able to tolerate the abx. Best of luck getting going with all this! Michael

Just for clarification, I am not working directly with Dr. Klinghardt. The information I have been using came from recommendations he made in slide presentation format, somewhere someone posted the slides, they were quite detailed and had a lot of interesting recommendations. This presentation is probably from a couple years ago now, so not necessarily the latest or his current thoughts, but still has been helpful for me.

sptcmom's initial post on this thread has a link for buying the book, with instructions near the bottom after the page loads.

Glad to see things are moving along for you. Hopefully the surgery went okay. Sounds like you'll be a great doctor, we sure could use more doctors that have lived through the crazy symptoms, so they can be more helpful to us, and just plain nicer as well!

Thanks for posting, great to hear that at least some real research is going on. Yes yes, very scary to have research going on regarding things that have worked for some people. It always sounds so crazy when they refer to actual experiences as not "evidence based".

I know about some of the lyme labs, but not much about the other ones. There may well be some parents here though that could help. Have you posted the results somewhere (I don't see them anywhere)? Michael

Please remember, when making this decision, steroids are said to be bad for those with lyme, as it suppresses the immune system and allows the lyme to grow. Something to keep in mind, relative to how confident you are or aren't that lyme is not involved.

I always like to hear what others are taking, good to consider the possibilities. Just as an FYI, the thing that I have done that has helped the most with parasites is avoiding (except for restaurants) eating onions, mustard, and garlic. These things have chemicals that are food for the parasites. I got this from a Hulda Clark book written about cancer (she believed parasites play a major role in getting cancer). Very hard to avoid completely without a major diet rework, these things are in so many flavorings, including ketchup and, of course, mustard. As I have not avoided completely, it seems that really limiting can be helpful. Dr. Klinghardt recommends Gamma Rizole and Zeta Rizole (also from BioPure) for parasites, and those have been very helpful for me as well.

Well, I'd agree with the others that it's not something to completely forget about. If the doctor was thinking to put it out of mind and never consider babesia again, I'd be very concerned with that approach. But, perhaps, consider if the doctor was really saying/thinking, okay, the game-plan to start will be to address things other than babesia, and then later on we'll figure out if addressing babesia specifically is worthwhile. I think many LLMD's agree the order of what you treat first and so on, is important, and needs to be based on the total picture of what is going on with the person (not always an easy decision). Regarding your own western blot, the overall result shows negative because some geek programmed some computer to say it is negative unless there are so many positive ones, because some beaurocrat thought that would be a good thing to put on the paper. Some of this has to do with reporting requirements for the CDC. I would not pay any attention to any "overall" result, just look at the actual information, the band-by-band results. Technically, the positive band indicates some antibodies to something in band 23 is present, but not necessarily that any bacteria are present. Mostly, people look at that and figure it means your body made the antibodies because the bacteria at least was there at one point.

My goodness, yes, a bit perplexing... sometimes these doctor/medical types do things that can just drive you crazy! After reading your post, didn't have any good thoughts other than obviously you can't be so sure how much to rely on the office that handled that test. Yes, very good thought by Peg, MAYBE that's what it is. I dunno, I've had plenty of bills with plenty of diagnoses, for sure, yes, but I've never had anyone with a summary from all that, even at these outpatient centers that do stray procedures like you have scheduled for the 21st. So, let's hope that's it, I wouldn't assume it though. I think as far as getting down to the truth, I like kimballot's suggest as a start. I do think you want to give that office that may have mishandled this a chance to explain how things went this way, from there perspective. I would suggest carefully noticing how they explain it, how apologetic/sincere their explanation really is. I say this, because, some patients with difficult situations can get into situations where their doctors are really just humoring them and not taking their situation seriously, so, I think what you want to find out is, how seriously that office really is taking your situation. You want to know if you can trust them going forward. Good luck! Michael

All I have heard regarding the CD57 and bartonella is that bartonella does not affect that score, so I would not read into the CD57 score anything about whether you have bartonella or not. I have heard Dr. Burrascano say that he believes a CD57 score below 60 indicates borrelia (lyme) PLUS mycoplasma. He sees mycoplasma as opportunistic, and suggests treating the rest of the problem (lyme and whatever else) and believes the body will eventually take care of the mycoplasma once the body gets stronger following other treatments.

The word on steroids is you don't want to do that if you might have lyme, so, at a minimum, you would do well to hold off on that until the doctor reviews the results.

Where are you seeing that? I wasn't aware there even was such a thing as saying what forum you are on.

Looks positive for lyme if there are significant lyme symptoms. Remember, although there may be no coinfections, it also may just be false negatives, as that happens frequently. Hopefully you can find a way to get to an LLMD, their experience in knowing what to do can make all the difference, what a ridiculous pain to not have one in the whole state!

I think that's a question for Cunningham (or someone in her office). Not all donations are tax-deductible, it depends on how the organization is set up.

Yes, even as an adult, when I was doing quite terribly before I started getting abx treatment, I would have fears that I had no idea what it was "from".

The prevalence of the colorings perplexes me as well, and of course is frustrating too sometimes. My guess is it has most to do with wanting to have a positive customer experience so the customer will keep taking the drug, and they either think or know that, for the majority of people, that helps.

Very low CD57 score for 10yo consistent with lyme, as is the western blot as you mentioned.