MichaelTampa

I'm not familiar at all with use of these drugs for lyme, although it's always possible this is a "herx" reaction.

I never got much out of regular chiropractor work, maybe they are good for dealing with accidents, but can't see that directly helping lyme. Blood flow is good, having the structure proper is good, and if a chiropractor can actually help with that, then it would be helpful for lyme as a supportive type thing, helping the body function better and so fight lyme better, but not a lyme treatment per se. That said, I have been helped a lot by "regular" massage, and by other work realigning the body that is a specialty form of massage, and by including foot lift to correct for bone lengths that are uneven. None of these things were actually done by chiropractors. That said, I am headed to a chiropractor in about a week to try to improve nasal/sinus passages through a balloon exploding procedure, with the goal to help my body deal with staph in the sinuses. So, chiropractors can probably occasionally do useful work here and there, and other people can do aligning work that can be helpful, but I'm not sure just having someone break your neck once a week is going to do much, particularly for lyme. As Jodie said, what does this person actually have in mind?

Bartonella is normally treated with one abx--rifampin or levaquin or factive. But often people do not treat just bartonella, they are often treating lyme and/or babesia as well, so then they may be taking more than one abx at that time.

My understanding is after a year it almost definitely will be, after a couple months it likely will not be, and that time in between a couple months and a year is the critical period where it becomes chronic (won't be precisely the same time period in every case).

The CamKinase really is not available these days anyway. The CD57 and IGeneX western blot are both good tests. The CD57 I still think is best done from LabCorp and with insurance is very inexpensive, which makes it really an excellent place to give you some idea what's going on. Likely a doctor will want a western blot before treating. Like lymemom said, any dr can Rx the tests--the question is more whether the doctor will be willing to Rx the test. IGeneX has their own order form you would want to print out and bring to your doctor to sign.

Sounds everything like babesia. Congratulations? When my symptoms increased as I started babesia treatment, I added back red root powder (in capsules) and boneset tea and feel they both helped make it much more bearable.

Literally healing overnight from abx, I would say, is a big clue, as that is a very unusual experience, at least in the lyme world. Now, what it is a clue exactly of, I have no idea, but I should say that is something you should keep thinking about and as you network with others, knowledgeable practitioners (not necessarily the useless ones), you might want to point that out and keep exploring why that might have happened. Regarding the parasite/worm testing, I would seriously suggest not wasting any money on any stool testing for the parasites/worms. ART would be the only thing worthwhile, I would think. Every human has parasites/worms living in us, and they are not all in the intestines that would even have a chance coming out in the stool. In most (all?) chronic lyme cases, parasites/worms are a serious issue to deal with, and so it makes more sense to assume they are there than it does to run a stool test. Now, there are many types, and perhaps ART can help gear where the worst problems are, or at least priority for the moment to treat.

It sounds like you're saying the lyme treatment helped a good bit, but only so much, and now symptoms are coming back, whether those abx are used or not? There can be more to good lyme treatment in addition to abx to kill the lyme bugs, and I wonder if that could be the issue here. These lyme bugs live in community called biofilm with other things--fungus, worms/parasites, heavy metals and even minerals. These other things protect the lyme bugs from the antibiotics and the immune system. So, addressing these other issues with their own treatments can be helpful. The worms are bigger than fungus and bacteria, and in that sense can be the linchpin and an important one. For example, there was an article some months ago from some lyme society in NY speculating that the worms actually farm lyme spirochetes/bacteria similar to how humans farm cows--all this in the sick person's body. Treating just the lyme bugs but not the other aspects could be one explanation for making good progress, but then ultimately stalling with symptoms getting worse. So can failing to treat a coinfection, and this happened to me just recently as I had stalled and then we added treatment for babesia and starting making significant progress again. This happened even though symptoms really did not point toward babesia very much at all, if at all, and I'll not that babesia, while a blood parasite, is a parasite. Other things to consider that I heard a lot about at Dr.K's conference a month ago are MARCONS and CCSVI. MARCONS is a staph infection in the nasal/sinus area that will cause problems on its own as well as creating biofilm for the rest of the body. CCSVI is a blockage in the veins in the neck area which return blood from the brain. This blockage can cause low oxygen blood to be trapped in the brain. The blockage is caused by biofilm, and ONE treatment for this is angioplasty; of course, if the blood is still very thick from biofilm the blockage can just recur quickly. This is a very recent discovery that many with MS have this blockage, and is relevant for the lyme community as many with MS have undiagnosed lyme causing their MS symptoms. Apparently a few miracles for lyme patients have occurred by treating CCSVI with biofilm, for those with lyme treated but remaining neuro symptoms. One such miracle lasted just 4 days until the blockage recurred, and while that recurrence was a shame, the immediate relief of symptoms from the procedure certainly provided clear direction in terms of what was causing symptoms. Anyway, so those are some additional things to consider, and perhaps your ART person can consider/test for some of these issues.

I had way more symptoms than your son. But I did have noticeable but unsatisfying improvement (with OCD and other symptoms) from biaxin. I had band 41 positive and band 39 IND for both igg and igm, and everything else negative. I also had very low CD57, and negative for some coinfections. My llmd said the most telling thing of every test I brought him was the IND for band 39, which he considered very specific for lyme (some study does back 39 up as the most specific for lyme). He considers IND as a positive, just a weak positive (a half star or half plus, if you will). So, regarding what your llmd will say, of course it depends on the doc, but some llmd docs will consider the igenex western blot a positive one. I do think lyme treatment at this point is the next logical step of something to try. The response to biaxin shows something infection related is going on, the western blot indicates lyme may be a part of it ... why not try some abx more effective at treating lyme and see what happens? Keep in mind, at least for most people with lyme, there are other aspects to successful lyme treatment besides the antibiotics. Heavy metals and parasites/worms are excellent things to deal with as well. Regarding treating lyme plus bartonella versus just lyme, with this limited list of symptoms, I think I would be inclined in the beginning to go with the llmd's guess whether bartonella should be treated in the beginning. Mine diagnosed me with bartonella initially, but did not treat it until several months later. And then much later than that we treated for babesia as it seemed like the thing to do at the time (correctly so).

At the beginning of my lyme treatment, I took daily IV abx with Tindamax daily for 14 days and then off for 14 days (taking Alinia instead) and then repeat (14 days of Tindamax again, etc.). Later on in lyme treatment, I took tindamax daily along with other abx for 3-4 months.

I don't see why not. I have had plenty of muscle spasms that are internal. I can feel them, but nobody can see them. Some muscles affect limbs and eyes and their tics are easily seen, others not, but no reason this can't happen to muscles that do not affect things easily seen.

Adult here, tried prozac, was absolutely horrible even at very low dose (10mg/day), this was before diagnosed as lyme. Once I got a bit into treatment, things are much better, no need to consider stuff like that these days. I think it's a bit of a crapshoot.

Certainly they are both very suspicious of lyme, and given aidan's situation, more suspicious. Yes, there is a confirmatory test of sorts on that band 31, hopefully someone can chime in with the details. If you order it soon enough, can probably do it with IGeneX using the same blood they already have. While the jury may be officially out regarding transmission from person to person, I hear about too many situations in families where it is either being transmitted that way, or maybe just being infected by similar mosquitos, I do think real caution is in order regarding possible infections between people, particularly husband/wife. This is something where, due to having real diagnostic testing available, the official jury is going to be out for decades, meanwhile real cases of transmission from person to person are going to keep happening.

I do not remember clearly everyone on here, but my memory of you is that there were strong indications of likely lyme (at least in my opinion). What other testing have you done besides CamK and the recent bartonella test? Any other key symptoms to mention? You can have bartonella by itself, but when bartonella is there and there is a real problem, I think more frequently lyme will also be there (as lismom said above). The CamK can be from lyme rather than PANDAS. Of course, there can be lyme and PANDAS together. Don't know if it can be just from bartonella.

Yes, I have heard of this, and explored it as a possibility in my case. Turns out it was not at the root of my issues, but the treatment I was given for this was nonetheless very helpful for me. The treatment I received was 2 hours a day of breathing through an oxygen concentrator for a few months.

I have used cholestyramine and chlorella. Lately I have used the BioPure brand of chlorella. I find that the cholestyramine works better than the chlorella for me. BioPure also has a chlorella growth factor liquid which I am now taking instead of the chlorella itself, but it is still not quite as good as the cholestyramine I am also taking. Perhaps for me the digestability is part of the issue for the chlorella, making the cholestyramine more effective.

My western blot testing was IGeneX. I didn't do it at any other labs, as I had heard of the flaws in the other labs well before I managed to get a prescription for testing. I also did CD57 with LabCorp which was something like 27 or 30, again, consistent with lyme.

First of all, part of why they find more is they simply look more. There are a couple bands that the other labs simply do not test for, wherease IGeneX tests for them. These are not stray irrelevant bands, they are key bands, so key that vaccines were developed based on the proteins/antibodies involved. The other labs avoid testing to go along with CDC recommendation, which was given because CDC doesn't want people testing as positive simply because they were given the vaccine. Of course this is just stupid reasoning, the vaccine was given to a few thousand stray people over a decade ago, but that is how it happened. There are other reasons, maybe they are more "sensitive", that, I have read about, but do not remember the details.

Certainly not too late to test, if that's what you're asking. I am quite certain I had it since childhood, and got positive on band 41 and IND on band 39 testing at age 42. Not that everyone would get positive after that many years of infection, but for sure it can happen.

If the problem started after an infection, and antibiotics seem to help, it seems to me very likely something infection-related, whether that is PANDAS or mold or lyme (or something else).

Okay, PM was full, made some room.

I have not tried the Gia Wellness cell guard, as I just do not use cell phones. I'll look at my PM and see if it is full or anything else wrong I can see.

We had a mold remediation expert come in to look around various parts of the home, things that we were suspicious of. That was just a free visit to talk over what might be done in terms of testing and/or remediating, and I think an excellent place to start. The tub was just obviously moldy on the caulk in plain site. As the caulk had come up in places, he said possibly it could have spilled beyond inside the wall, and he did cut out the wall on the other side (back of a closet) to look in and said it probably was okay (wouldn't know for sure until removed the tub). For the problem that he said it looked like we had (just the plain site, nothing else), anyone could have done that, really, I think. But we hired them because if there was more bad beneath that was unsuspected, someone general would likely not handle it seriously but they would have. Turned out there was nothing more serious beneath. Some people like to have the remediating done by one company and the testing done by another, perhaps that makes sense.

Going from memory here, but I think the higher the MERV number the "better" it is in terms of blocking smaller particles. But, the recommendation I hear from "the mold experts" is to get MERV-11 to catch the mold spores. I don't think they say MERV-12 or 13 is a horrible, I think more like money unnecessarily spent.

Yes, those are good reminders Jodie, thank you. The conference was advertised as geared toward patients and practitioners and both were in attendance. But, really, it was geared much more toward practitioners, in my opinion, and I think there were very few there who were patients only (out of 140 attendees, I would be surprised if there were more than 10 patients-only, not counting the bloggers/writers/editors/vendors). Many of the practitioners there had been or currently were also lyme patients. These observations are based on a number of people I spoke with there and various conversations I couldn't help overhearing. I think one speaker actually asked for show of hands on this at the beginning of their talk and I just barely missed it, coming in a little late, so if anyone was there and saw that, would be curious how the hand-raising went. Self-treating has its issues here and there even with ART, but without it, could potentially cause serious problems, particularly with some of these remedies Dr.K. is suggesting.