MichaelTampa

It sounds like avoiding arginine as a stand-alone supplement is a clear recommendation. But, for those trying to get enough protein to fight the condition, what about a high-protein diet, or even a protein supplement from an animal source high in arginine? That, I don't know, but suspect from a food source it will do much better than straight arginine. Even the 500mg arginine capsule I would take was not a lot, and eating that much from food is something I would do regularly without noticing any ill effects.

Regarding the protein, I am a vegan, which is generally going to mean low-protein compared to others, and low arginine. My doctor did recommend cysteine, ornithine, lysine, and arginine, to help make growth hormones, which I was low in. And, the arginine and ornithine really gave headaches. I had taken cysteine in the form of NAC (N-acetyl cysteine) for a long time, and lysine I found a little helpful. So, the lysine and ornithine correlated with what that article said. I also take a protein supplement, and noticed when I was doing the best with lyme, I do need less of the supplement. I have read in a number of places the protein is important when fighting lyme, so perhaps more to be careful in avoiding arginine than anything else.

Thanks for posting this, it explained a number of things that have been going on with me. I may need to re-read, but I wish I walked away with more of a "what-to-do-about-it" regarding the ammonia. By the way, regarding the nitric oxide he refers to, oxygen therapy can help with that.

I recently ran across his protocol, it seems smart to me. Some things I had already done in slightly different ways. I have started taking a couple products he recommends, Rechts Regulat (fermented enzymes) and Gamma Rizol (to kill parasites/worms), and I have had some things feel better in the 3 days since I just started. Michael

Yes, some lyme docs really think it's quite worthwhile and others don't. Klinghardt is one who seems to believe in it, below 100 showing you're struggling with lyme and below 60 showing mycoplasma is also involved, according to him. I've had it 4 times, and have to say, the results have correlated well with symptoms and treatment and all that. I have a score of 30 before any lyme treatment, 54 after two months of IV antibiotics. Treatment had stopped just a couple days before the test, and I had improved a lot, but not completely. A score of 100 is thought to be high enough to get off lyme treatment without relapsing, while 200 is thought to be normal, so you might have thought I would relapse with that score. A month later, it was up to 70, and I continued to see improvement but still with symptoms. Then, a month after that, symptoms had returned and it was down to 27. Now, the symptoms with the score of 27 and a couple months off treatment are still better than before treatment, so the relapse is slow, and I hear different strains causes slower or faster relapses. I see the CD57 more as a sign of the direction things are going, how many natural killer cells you have available to fight the lyme, rather than how bad your symptoms are. Michael

I have read that lyme is, for some people, the real cause of Parkinson's, which is true for a long list or neurological-looking disorders (MS, TS, autism, ALS, ...). I haven't heard any numbers on what pct. of Parkinson's is really lyme, or whatnot, but it is definitely a possibility. Michael

Emerson, Yes, I have heard of patients with lyme having seizures. I have had symptoms that didn't explode on the scene like some of yours, but built gradually over perhaps 35 years before a lyme diagnosis. As the symptoms got worse and worse, and I went to more doctors and explained the symptoms, I did get very used to getting asked by everybody, if I had ever had any seizures (no, I haven't, not yet anyway). Perhaps it's just a good question for someone with neurological problems, perhaps the sensitivity to fluorescent lights (which flash constantly even if not everyone can see it) is what caused the questions, as that triggers seizures in some epileptics. The lyme infects tissue, and, bottom line, if the lyme infects your brain, all bets are off regarding what havoc can ensue, just the unfortunate reality, seizures for some and not others, poor memory for some and not others, nightmares for some and not others, sensitivity to wireless devices for some and not others, tics that will cause a Tourette's diagnosis for some and not others, and on and on. I have heard a lot more of people with Tourette's having seizures than those with lyme, but, of course, there are no doubt plenty with Tourette's where the symptoms are caused by lyme and that has just not been figured out yet. I probably should point out, one poster on a different forum will get seizures from taking an amino acid supplement Glutamine, which can be used to great benefit by others with various problems. Glutamine can increase activity in the central nervous system, and that is probably the issue there for that person, so caution can be appropriate with some supplements/drugs. Michael

I think the high rate of false negatives is the main reason to skip the PCR. Lyme loves to hide out in body tissue, NOT in blood. It's just very unlikely you'll find it there, so I would reserve this test for someone really desperate for any hint of information after using the more likely sources of real information. The western blot can have false negatives too, but it's not nearly as useless as the PCR.

Mine paid roughly 50% when all was said and done. They treated it as an out-of-network treatment that was "too expensive". The out of network made it 70%, based on my plan, and the "too expensive" part meant that some was not paid at all, while the rest was paid at 70%. I'm sure experience with this is going to vary.

Fixit--I have been on it just about 5 days now, not very long. The papers that come with it say to take a low dose the first week to hopefully avoid a detox reaction about 5-7 days after you start taking it. So I guess that would count as a potential side effect. Don't know what else. How long you would need to take it or benefit from taking it is going to depend on the individual situation. I was thinking perhaps those taking prophalactic abx long-term for PANDAS, but concerned about the levels of abx each day long-term, might consider take this long-term as an additional help for that same situation, or perhaps allow to reduce level of abx they take each day because this would be doing some of the job. Really just an idea not backed by any experience, just saw it was supposed to be great for strep and seemed to be pretty powerful. Anyone trying it for PANDAS would be breaking new ground, I suppose, and would be figuring out for themselves how helpful it really was and how long it was useful. philamom--Yes, LDM is the liquid version. The capsules have the product name SEES-2000 (don't ask me why).

This is an herb that a Dr. Klinghardt has in this lyme/autism protocol. I thought it was primarily for worm type parasites, but I don't think the presentation I read actually stated why it was in his protocol. But, I wanted to tell you, when I got the stuff, it stresses how great it is with lung type infections including flu and strep. It is one of the very few herbs that when I take it, I could feel it doing something right away. When my wife took, it, she could also feel its action pretty quickly. She has always suffered breathing problems, and was breathing much better in a matter of minutes. Just wanted to pass it on for anyone looking for additional ways to keep the strep or mycoplasma down, or to potentially reduce the amount of antibiotics needed. Many years ago, it was seen by the native americans in Utah as a very powerful medicine. I bought it from barlowherbal.com. They have it in liquid extract (with alcohol base) or in capsule form (no alcohol). I got the capsule form, it smells great, somewhat minty-ish. Michael

I always thought most of the fish oil was from krill.

Bands 31, 83, and 93 are considered specific for lyme. The IND result indicates something showed up, but not so much that they are confident calling it positive. I have read that some docs treat that as positive, and I know at least one that does, as mine does. I think that western blot is pretty significant, considering the positive and IND's. I do hope you get that appointment back. If you are lucky, the doc will know something about PANDAS as well to consider that ... not all of the lyme docs do, but some of them do.

One symptom that I think goes with lyme, that I have not heard of going with PANDAS, is the pain by the joints, whether it's arthritis or just a shooting pain. Sometimes for lyme it is migrating, too, as it is apparently caused by the bugs, and they can move around in your body. I had pain in my left elbow that would come and go, sometimes mild, sometimes really sharp stabbing pain. Eventually, it moved to my left foot, and was much worse there. The left elbow pain was blamed on sitting in a chair at work with my elbow on the armrest frequently, so it was getting a lot of pressure. The left foot pain more frequently occurred while going to the bathroom, or when emotionally distraught about something, and so, of course, people thought I was just crazy and it was of course caused by just not having control of my emotions. It did move back to my elbow and then back to my foot. Then, when I started oxygen therapy (well before even hearing about or considering lyme as a diagnosis), I had what I would now describe as herxing pain in my foot, for a few days in a row, it hurt while doing the oxygen therapy, and then the pain was gone forever. Rumor has it oxygen can kill bugs, and some do use HBOT as part of lyme treatment, although I do not know how widely accepted it is. This was not HBOT, which is probably more powerful and expensive than what I was doing, I was using an oxygen concentrator that I was renting and eventually bought. Anyway, I would say pain in joints / arthritis / migrating pains might be clues of lyme unrelated to PANDAS.

I was diagnosed with Lyme by an LLMD. I had a very low LabCorp CD57 score of 30; IGeneX western blot was positive band 41 and IND band 39 and negative everything else; IGeneX tests for coinfections and lyme with antibodies were all negative; LabCorp ELISA negative for lyme; and plenty of otherwise unexplained neurological/psychiatric symptoms.

IGenex does require an MD to sign for it. No idea if chiros are MD's, but the key is to get an MD to sign for it, chiro or whatever.

Yes, I really was referring to the antibodies that could be coming from the donors. They do have blood tests to look for the lyme bugs (I think they call it PCR?), so, perhaps that is an indication that it is at least possible to have a lyme bug in blood. However, I have also read, they do like to hang out in tissue and particularly organs, making it much less likely to get an infection of that sort from donated blood. Of course the donated blood is also screened and cleaned and all that, and hopefully that process has a good bit of value as well. Michael

First of all, unfortunately, none of the tests work well enough to really rule out lyme if they all come back negative. There are just too many problems with it. The tests that look for antibodies have the problem that your body can be too weak to make enough to be noticed, or maybe the body can't make antibodies (like your son can't for strep). The ones that look for the actual lyme bug (PCR), well, lyme doesn't hang out a lot in blood, they like tissue. And all the tests have the problem that there are so many different lyme strains that the tests do not test for all of them. This is why an appointment with someone really experienced in diagnosing and treating lyme is really important, regardless of any test results. As far as which tests to do, I believe it is the PCR where some have said abx messes it up. Sounds like your son's situation is one where getting off the abx is a real problem, seems like reason enough not to bother with the test. How many to do is a real judgment call, somewhat depends on how much money you have to spend. In general, I suggest the IGeneX western blot, IGG and IGM, get an appointment with a lyme doctor, and that is a good place to start. Then you and the lyme doctor can always decide to do more if it really seems like it would be helpful. Regarding being 3 weeks post-IVIG, I have a feeling that could mess up any test results, even western blot. Someone else my chime in for sure, or maybe IGeneX can tell you, but, so soon after IVIG, if it comes back positive for lyme, the question would be, how much of that is from your son, and how much is from the IVIG donor blood? Michael

Regarding magnesium and biofilm, the concern I heard was regarding magnesium stearate, which is a filler put in some tablets--not sold as magnesium, just something to bind them together. I took a few different magnesium supplements when my lyme was at my worst--Vitamin Code's Raw Calcium (contains calcium and magnesium), Natural Vitality's Calm (contains calcium and magnesium), and magnesium malate. There are a variety of supplements that can also help with biofilm, and I believe far infra-red sauna can also help with that (but would recommend doing that gently, not as long or as hot as most people do saunas). Michael

To get a recommendation in your area, I would recommend going to www.ilads.org, and following the "contact us" path to request a list of ILADS trained doctors near you. If your insurance requires referral, perhaps then you can request your doctor/ped give a referral to someone you select from the list you get from ilads. Lyme testing, particularly for kids, is difficult, there are a variety of tests that can be done, none are perfectly reliable. For a couple hundred dollars you could get an IGeneX western blot. My insurance partially covered it, I imagine everyone's insurance experience is going to vary. If you're concerned about the cost of tests, you might just start out with an appointment with a lyme doctor and see what they recommend. I imagine some doctors like to do a lot of testing while others not as much. Michael

I think many experienced lyme doctors would consider that pretty positive for lyme, if clinical symptoms looked like lyme. All I had was 39IND and 41+ and lyme treatment was very helpful for me.

Country life makes inositol powder with no other ingredients. It is available at health food stores and vitacost.com (and perhaps other places like iherb.com, etc).

In some real sense, you don't ever know. Antibiotics can indeed kill a lot of things, so you know you took these drugs and got that result. The rest is educated guesswork, perhaps. The good news is, it is a lot more important to find a doctor that will respond to symptoms with an effective treatment plan, than it is, say, to be absolutely sure what the name of the bug was that caused the problem. But, for those really wanting to know, this is where I would have to put a plug in for the non-MD's out there, and energy testing of muscle testing or whatever you want to call it. There are NAET practitioners, acupuncturists, and other "alternative" practitioners that have vials infused with the energy of various bacteria and viruses. Energy testing cane demonstrate which ones you react to, and that can, in some cases, provide more specific diagnostic evidence regarding what particular bugs might be the problem. I also thought the fact that I tested very strongly for andrographis and japanese knotweed (aka "resveratrol"), as if they were very beneficial for me, as more "evidence" that I had lyme, as these herbs have the reputation of being very good in helping treatment of lyme. Of course, they could have gotten this reputation from people who only thought they had lyme but really had something else, so, again, it is really just known that they helped people that had symptoms of lyme and thought they had lyme.

As Elizabeth mentions the muscle testing, I also had a positive experience with that. My NAET practitioner had vials for lyme and the coinfections. I tested as "allergic" to bartonella and lyme, with bartonella being the stronger bad response. I treated with abx and herbs, and the herbs for bartonella and lyme overlap some, so it's hard to know what you're treating with what. But, point is, if you look just at symptoms and response from treatments, you'd conclude I had lyme and bartonella. Then, if you look at all the various tests I've taken with the semi-conclusive results for lyme, and negative results for bartonella (yes, through IGeneX), it looks like the muscle testing shined through as the best test I took. Michael

I'm an adult, so, for what it's worth, I was helped enormously with IV antibiotics. I definitely had/have lyme, PANDAS is questionable. I don't have a response to the vaccine for strep, and had a high CamK score, but the CamK score could be from lyme too. I haven't noticed big flare-ups of symptoms, perhaps more distinguishing of PANDAS than lyme, but then my symptoms are actually sensitivities to things I generally avoid, so, it is difficult to conclude to much there. But, anyway, the IV did help quite a lot with the lyme. I took 1000mg of Invanz daily for 2 months, along with tindamax and alinia being rotated for their cyst-busting properties. Michael