MichaelTampa

Will be curious to hear what all the parents/moms have to say. The more I hear real-life stories on message boards, it seems like there has to be this condition of lyme where you have it but it's just not that bad (maybe even asymptomatic, living at peace). In this place, seems like you can pass it to your kids, maybe it just progresses really slowly. In some cases, a vaccination will really waken it up and cause things to quickly go haywire. My mom remembers me as being a healthy baby and child. I remember a few more problems with stomachache and headache and sore throat than she does, we both remember the nosebleeds. For me, I don't know if I was born with it or got it as a child playing with deer (as we did a few times) or whatever. But, looking back, I had symptoms way back into childhood, they SLOWLY progressed. Until age 25, I would have seen myself as a regular healthy person (most symptoms are just part of life, how did I know, and I think everyone does this). Then I vomited blood there, and I was a 25-year old who knew I had at least some problem, but the doctors explained it as no big deal, nothing a drug wouldn't fix all up. It wasn't until 2006, age 38, when a near-drowning made things go totally haywire physically and emotionally to the point that anyone would have recognized me a person who really had a sickness/condition.

Been thinking about this literally for months, wondering when the right time to do it would be. Tried something like this several years ago and it was a disaster, so kind of looking for a little better healing first, and no idea regarding the right time. Also very curious to get details on protocol you followed, and the state of your digestive system before-hand (what problems, if any, you had), as I've had a lot of digestive problems. These problems make me feel I may have much to benefit, but also wondering if they will cause the problems I had last time. Last time I tried, I couldn't take all the stuff and eventually just vomited and stopped. I have had a lot of food sensitivities, acid reflux, sliding hiatal hernia, plenty of loose stool/diarrhea, plenty of food not really getting digested (looks similar coming out compared to how swallowed).

One thing I want to point out is my experience of needing probiotics. I use energy testing (pendulum, actually) to determine my needs. (Very helpful, rather than guessing, which is what most people and doctors are doing.) So when I say what I was taking/needing, it's really based on something. When I started lyme treatment with IV and tindamax/alinia (rotated between tindamax/alinia), I needed about 125 billion about every 3-4 HOURS. This was for several weeks. Very expensive, by the way. Anyway, it calmed down over time I needed less. Then IV stopped for insurance reasons, stopped tindamax/alinia as well. Picked up with orals of tindamax and factive eventually. Again, more probiotics needed, more than where I left off, but it reduced quickly, eventually added ketek, needed way more probiotics again, but again reduced. I am really getting through treatment, almost done, and at very least, the abx are doing less and less these days. Now I take probably 40-50 billion per DAY, even though now it is 3 abx, going through the gut, which should mean there would be more need. All through this I have been taking nystatin as well, which again has gone from extremely high dose to more normal dose. So my point I am trying to make here is, you might seriously consider how sure you are that these abx he is taking are really the right ones, really doing the killing you're looking for. Of course, there could be other reasons none of us understand for why he needs less. But, I would say, consider the abx a little, or need to treat parasites/worms first, or a coinfection first, or add biofilm enzymes, ... hmmm... On the ART, autonomic response testing, lots of names for this. Picture your son holding a bottle of pills up against his chest, near his belly button. With the other hand, he is holding it straight out away from his body (horizonal, parallel to earth). You and he are consider questions, 1 at a time, like "is this good for [me/you/DS name]", "1 per day", "2 per day", "3 per day", "best with food", "1 at breakfast and 1 with dinner", and so on. While each question is contemplated, you modestly push down on his arm, and he resists somewhat, and if he can keep his up, the answer is "yes"/"true", otherwise "no"/"false". There are a variety of positions and muscles that can be used for this, that is a common one that practitioners use. I would not expect you to just be able to do this well without any real teaching face-to-face, there is some skill involved, and knowledge of acupuncture or energy medicine certainly can help. (But perhaps give it a try, just for fun. It's good to learn with questions you know the answer to, like, "my name is Michael", would return a "yes", as in "true" for me.) But there are plenty of acupuncturists and other health care providers out there than can do this for people, and some are probably nice enough that they would teach you to do it. I have heard some compare this testing to lie detectors, I suppose it's a reasonable comparison. I use a pendulum, some kind of stone hanging from a very thin chain. I get it moving softly in a bit of an oval direction, clockwise or counterclockwise, whatever, more forward and back than left to right, then put the substance on my belly, and ask the question. If it moves towards pretty straight forward and back, that's yes, not-so-straight-forward-and-back is no. I've tried lots of ways, this was the only one I could learn. Somepeople learn really easily. There are ways to test oneself with muscles too, some youtube videos someone did, maybe he called it muscle test or applied kinesiology test, don't remember.

Oh, forgot this was on lyme thread, not PANDAS. Yes, for lyme, would agree with LLM that gosh, don't expect that to be practical. I think an experienced lyme doc to really narrow the choices along with some energy testing to help pick just the right one is a great way to go. My doc and I have done well together like that.

I think it was posted here on ACN (lyme or pandas, don't remember, read them both) just a week or maybe two ago. If you read carefully through, you should find it. Of course, hopefully the one who posted it will see this and chime in. I had something done kind of like this back in 2008, from Genova Diagnostics, with a stool sample. It gave a lot of information/data from the sample, but for some of the bacteria--klebsiella pneumoniae, citrobacter youngae, citrobacter amalonaticus, citrobacter species, they said, for each abx and herbal they listed, whether the bacteria was susceptible, intermediately susceptible, or resistant. Abx were amox/clavulanic acid, ampicillin, cephalothin, ciprofloxacin, tetracycline, and trimethoprim/sulfa. Herbals were berberine, oregano, plant tanning, and uva-ursi. You can see it's a bit limited in scope of bacteria and abx, but maybe you can find what you're looking for. Yes, energy testing is another way you could go about this.

If shelling out lots of money for a lyme doc is not an option, I am wanting to suggest an alternative to at least explore the lyme thing a little more. Dr. Klinghardt has a non-abx protocol for lyme/autism kids. You might get familiar with it, and also get familiar with some of the herbals used for lyme treatment. There's are a lot of supplements in these categories that you might obtain, or at least obtain some of them. (I, and others, could help you create quite a list, if you don't already have this information.) Perhaps some of the detox things you are already doing anyway. In any event, perhaps you could find someone in your area who could "energy test" / "applied kinesiology test" some of these supplements/lyme treatments to see if your son tests that they are good or even very good for them. If these things are good and helpful, in the beginning perhaps, it really doesn't matter why. But if he tests that a lot are helpful, and you see results, that might also be a clue that it is lyme. Many decent-sized cities will have acupuncturists that can do this type of testing. Ideally, you might find an NAET practitioner who has vials for lyme, the coinfections, and plenty of other bacteria and viruses out there, and could potentially help you find out what he is really reacting to. Just an idea, I know the lyme docs are very expensive, and add in the tests, it's a lot. This is a way to at least pursue it some at a bit of a cheaper cost.

It can start slow, it could be the beginning, for sure. Those sure are some odd developments, as you point out.

Band 39 is the most specific for lyme. Most lyme docs consider the IND's to be positive. I think with 39 very specific to lyme along with 31 both IND, and 41 positive IGG and IGM, most LLMD's would consider this very indicative of lyme if the patient has significant symptoms that could be attributed to lyme (such as PANDAS symptoms).

Sounds plausible to me, like a few of the other explanations in the other thread. I think much more likely, additional chronic infection beyond strep disabling the immune system from dealing with the strep.

I think you would be well advised to assume you all have it until proven otherwise. Someone else I know had the rash from lomatium, they have very bad lyme as well which was not being treated at the time. This same person got another very pronounced detox skin reaction from overdoing the Enula herb, used for treating worms/parasites/babesia. They just call that an allergic reaction because they don't know. It's got to be a detox rash. Itching, of course, is another lyme thing. If money is tight, I'd focus it on treatments, like you suggest, perhaps some herbals, more likely to help some than hurt. So, this "someone I know", is not interested in the tests and abx, not for money reasons, other reasons, but they are trying some herbs here and there that I have, continuing ones that seem to be helpful. By the way, niacin (the real stuff, not the flush-free stuff) is also an antibiotic and can be somewhat helpful. Of course, the flushing aspect can be quite unpleasant, enough to push away those that are not really devoted. Another diagnostic approach besides the blood tests is the energy testing that an acupuncturist style person can do, if they have vials for lyme and coinfections, as some practitioners do, particularly those practicing NAET. A person like that could also test you for a variety of herbs. That could be a little money well spent, in terms of a little more verification of whether you really are reacting to lyme and which coinfections, if so. And then to see which herbals you test as being useful would also be a help, to verify the infection and give the herb treatment the best chance to be helpful. (You might see things like, sure, vitamins are nice, and these other herbs are nice, but why do I test really strong for these herbs which are known to help treat lyme...)

When people have chronic infections, the immune system is often warn out and there are often multiple infections. So, getting rid of mycoplasma might really help some people with RA, but others with RA are still going to have strep and/or lyme and/or viruses, and won't feel better until those are dealt with also.

Yes, there could be a chronic infection that the zith is helping with and not strep. With a chronic infection the immune system is beaten down and then will not be able to handle stuff that healthy people would. Have you done any testing on immune system, or had evaluation for lyme? (Sorry, I remember your name well, but with so many people on here, I find it difficult to remember what testing and evaluation people have done.) Some with autism are cured with lyme treatments, and also same thing for lupus, so the rash does raise more lyme suspicion in my eyes.

I remember running across a presentation recently listing "natural/alternative" treatments for lyme disease. It listed like 15 different things, and this was the one thing on the list that I had never heard of--the Zhang protocol. Haven't tried it at all, and have seen very little discussion on them. I do think on lymenet I have seen a couple people mention the HH product.

I have bought CD's of the last ILADS conference, meaning I have now had the chance to listen to a number of lyme docs speak on the topic. I would expect most lyme docs would take the OCD-only symptoms seriously, and would treat if they felt there was a good chance it was lyme, even if no other symptoms. But, I would expect most would do some kind of testing, IGeneX or otherwise, for lyme and some other possibilities, before making a decision on whether to treat and how to treat.

After 2 months of IV abx treatment for lyme, my LLMD was ready to add in some IVIG. He only does what would be called "low dose" here. But, he definitely saw that as something that would be helpful. (Didn't happen for insurance reasons, so no report on how it went.) Risks for IVIG for anyone is you never know what infection you're going to get from the blood. Some things are too hard to screen for effectively. Would be terrible to have lyme but not the babesia coinfection, and then get the babesia coinfection from IVIG. I think that's one they screen very well for. So, risky for sure, very hard to assess how risky, but some docs do it, people probably frequently benefit from it.

100mg is 10 drops of the Nutribiotic, one of what they call a serving, and I am taking about 15 drops a day, typically split among 3 doses. So, it is definitely enough to do something (at least for many people who would use it). I would wonder, though, with a multivitamin, is it dry then, and is some of the potency lost that way?

I take sea salt as well. There is actually a lyme disease protocol called salt/C, where sea salt and vitamin C is taken. I think it's better at the parasites than the lyme, but tackling parasites is part of treating lyme. Some take it at very high levels which can be dangerous (for the salt). I haven't heard it used for what you're listing there, so looks like it helps with a few things. It does provide some minerals too, perhaps at least close to that "electrolyte" form. I take 1/4 tsp each morning.

Great to see you getting started without a problem there.

Not familiar with that brand. So many brands of everything out there. I do take chlorophyll, as a liquid, Eniva brand, they all it BioChlor. It requires refrigeration. Good idea to get some form of chlorophyll, should help.

Maybe you could test the 4yo for some markers of inflammation or autoimmunity--C3A and C4A (not an expert but think they test something like inflamation), or, of course, Cunnigham CamKinase?

Wendy, I've been thinking more about clay recently. I am currently using some special clay with mineral oil to help with tooth pain, from believed cavitation underneath tooth. It is a trick someone gave me many years ago, and pulled it out of the cupboard and helping for this. But it reminded me of all the people who use clay for regular detox, which I had never considered for myself (no specific reason, thought of other things first). Can you give me some details on the clay approach you use? What type of clay? What brand / where do you buy? And on dose, are you seriously giving 1/2 cup of clay a day to children that small? (It just sounds like a real lot.) Stirring it in water? Michael

She is 92 pounds and the tindamax was prescribed by an ILADS friendly pediatrician, but this doc admittedly hasn't worked with a lot of lyme cases. The tindamax was prescribed based on suspicion of a co-infection. Dd 10 has tested positive on Igenex, and has likely had lyme for over a year (I suspect 2-3 years). Dr. B began treating her for PANDAS, and he prescribes her other abx. I take 1500 mg daily (750 with breakfast, 750 with dinner), I've seen this number used by other adults. That would really translate to 1000 mg daily for her, in 500mg chunks. When they prescribe twice a day, it's because the body processes it so quickly that you won't have consistent high levels throughout the day with just once a day. There is a minimum dose you need to really be active against the bugs, and beyond that it may be wasted. If all you're going to use is 500mg per day, it might be just as well you're doing it all at once, making sure she gets enough dose when it is taken.

I wasn't aware lemon juice was used as a detoxer. One of the things I take is BioPure's MicroSilica, very expensive, didn't realize it until it arrived (when I saw how few servings were in it), but supposed to help detox from brain. I bring this one up because instructions say to mix with water and lemon juice. Hmm...

What does she weigh? And is the prescribing doctor for tindamax an LLMD or more an MD who is doing what they can to be helpful?

I have been nearing the end of usefulness of abx for myself, it would seem. As suggested by doc, I am going to start taking just 5 days a week, as part of process to wean off. Saturdays and Sundays off. But I did recently add GSE (grapefruit seed extract) a couple/few weeks ago, and again I had increased fatigue. I think it is doing some more good killing. The one of the three abx I am taking that is doing the most good, tindamax, is there for its cyst busting qualities, and that is what people say GSE is good for, so it makes sense. That's why I tried it. So, somewhat just wanted to send that out, can be pretty good stuff. I was surprised my body tested good for it (via pendulum), as have been testing it here and there for a couple/few years, even before I knew I had lyme, supposed to be good for candida too, and always got an extremely strong "no". But this time it was ready. My guess is, the harshness, as my esophagus has been ripped to shreds from acid reflux, and is slowly repairing, getting there, maybe now can just barely handle it. The GSE is very harsh, as I imagine anyone who has taken it would agree. Plan is so far to continue herbals 7 days a week, even with abx on 5 days a week, we'll see what my pendulum says when the time comes.