MichaelTampa

How unfair is that! Those nasty buggers should at least have it as tough as us to get answers!

I've never heard of tics definition being limited in that way to just voluntary control muscles. Anyone else?

All of those are known for that, as is fruit pectin. There are others I am sure, but don't remember them all. I have the most success with cholestyramine and then, second place for me is chlorella. I get the cholestyramine compounded to be without fake chemicals like sugars, as the standard version is a polluted in that way.

Well hello again, EA, was thinking of you earlier today, hoping you were doing okay. On the viruses, I have heard a number of times, people with chronic lyme typically have a number of viral infections. The chronic lyme does suppress the immune system, making it unable to fight the viruses one encounters in everyday life. It reminds me of the early 1980's when people were scared of people with HIV/AIDS, where the experts would explain it is really the people with HIV/AIDS that should be afraid of the others, as most people carry a small amount of various viruses around--the healthy people fight them back, but the people with HIV/AIDS when exposed can have a tough time fighting off the virus, so it can do some damage. Lymies are frequently not that bad off, but we really are to some degree. Most lyme treatment does not focus on killing the viruses, as they are everywhere, and once the lyme is taken care of, the immune system returns and can handle the viruses on its own. Of course, it's like everything else with lyme, there still is managing the symptoms to consider, and if valtrex helps for the time being so be it. On the MRSA, goodness, what a mess! Wish I had some good advice, I haven't heard of that one. I've heard that some with lyme have staph in the sinuses, feeding biofilm into the bloodstream, and there are some treatments for that. If the problem persists over time, perhaps that's a possibility to consider, but it really doesn't sound the same to me. Not only does lyme suppress the immune system, it actually changes your DNA to make you less able to fight infection. Hope you can get this figured out!

My LLMD prescribed IVIG after a couple months of abx (IV and oral). I think, too early in the process, they feel the lyme isn't in control enough for it to be as helpful, but later on, it can be. I never got the IVIG for insurance reasons, but that's how my doc seems to have been looking at it.

Two thoughts jump out here for me: 1 - Perhaps it is a yeast issue from the antibiotics generally, as yeast overgrowth can cause food cravings and overall hunger. 2 - When I was treating for babesia, I had to eat lots lots more for a period of a couple weeks. I didn't fight it, I just did it. My body needed it. Lots of protein and fat and iron and calcium. A couple supplements I took helped. Nutrex Spirulina (high in iron) and Hydrilla Verticillata (a green plant, high in calcium and then, to a less extent, iron and some other minerals).

I remember someone or two was in the Buffalo area. I was looking for help finding a doc for someone, not necessarily lyme related. Would like to PM you, in case you might have any ideas, but don't remember who it is...

While Quest offers this test, I strongly suggest LabCorp as it is what everyone has used for years, and provides the best comparison. With insurance coverage, it may cost $10-$20. Insurance typically covers this, although I think I read one poster said it was not covered for them. I sometimes buy it from directlabs.com for something like $130, and then I avoid the doctor visit--I pay directlabs, they provide the paper for LabCorp, and email me the results. When going through directlabs, insurance will not pay for it. The test measures natural killer cells that are thought to be suppressed by very few infections--some would suggest that only borrelia (the bacteria/spirochete that causes lyme) is the only one, making it very lyme specific. For this reason, it does not test whether there are coinfections. Some say extraordinarily low number also indicates mycoplasma in addition to borrelia.

I was an adult TS diagnosis before finally realizing it was lyme. Primary physical tic would be eye blinking, with some muscle spasms, but mostly anxiety/shyness. My muscle spasms were sometimes muscles inside the body where the spasm could not be seen, but I could feel it. Sometimes it was on the surface where it could be seen. Don't know if these are the most common ones for distinguishing lyme-related tics versus other tics, but that is what I had. From my memory there are a number of mothers on the board who didn't realize they had lyme until after realizing their child had lyme, so that does happen. If so, the lyme could be congenital. Since your child had eye blinking at such a young age, it is something to look at, in terms of the possibility that you passed this to him infection-wise. Fatigue, pain, and depression are some common symptoms, but there are so many. As someone else suggested, it is also possible there was a non-lyme related issue that made him more susceptible to getting the lyme later. In this situation, it is possible good lyme treatment would resolve the pre-lyme symptoms anyway.

I was diagnosed initially with lyme with the bartonella coinfection. The diagnosis of bartonella was based on symptoms, as I was negative on the one test I took for that. There are many similar bugs and the better term some are using is BLO's ("bartonella like organisms"). About a year into treatment, with things a little stagnated, no more progress, doc said we should treat as if I have babesia too as that is sometimes the reason people stagnate. He explained that I did have some babesia symptoms, even though they were not dominant. This worked out very well, restarted progress, so I assumed he is correct that babesia was discovered later as you asked. Of course, later at a conference I hear Fry Labs has discovered a protozoa that is another coinfection some have, and Dr. F. (of Fry Labs) is treating it with antibiotic protocol that is very similar (essentially the same) as that used for babesia. This new protozoa was initially called FL1953 and now has a 2-word difficult to spell and pronounce name. In retrospect, maybe it was this protozoa that I had, as treatment went very fast and well with this, whereas so many struggle with babesia treatment being so difficult. Well who knows. Perhaps we really need a "babesia like organism" term as well. Treating this babesia or whatever helped a lot, I am much closer to being all fixed up having done that, but would say I am still not there yet.

My health insurance (not dental insurance, but major medical health insurance) covered TMJ treatment, subject to the standard deductible and coinsurance that my coverage had. I am guessing that's fairly standard, but can't say that I know that for sure.

I really think, in general, they are the same type of treatment. Every doctor is going to have, at least slightly, their own way of doing things. The TMJ docs are going to focus some on proper structure/placement, and some on removing symptoms. It seems a doc not familiar with tics and how it relates to TMJ is not the ideal choice, as they will not be experienced and focused on removing the tics. It could work out to go to a TMJ doc not familiar with that, as their techniques of proper structure and other symptoms (even ones you may not be aware you have) could be sufficient to give you the adjustment needed to remove the tics--but it is just not the ideal situation. It's a decision you need to make based on how practical it is to find a TMJ doc familiar with the tics. Of course Dr. Sims and Dr. Stack are options, but I know a TMJ doc in Tampa--Dr. Garcia--who is also familiar with that, so they are not the only options.

We have also been slowly tackling long-standing mold issues in our home. There is only so much we can do at a time, with time and money being limited resources for us as well. I remember being told on a yahoo group to move out immediately because the mold can be so toxic. But I also felt, gosh, these have been long-standing problems, my health continues to improve with other treatment, so decided to just stay in the house and do it as we can. In these situations it seems to me some key things to keep in mind are, is health at least hanging steady or improving, and, to be careful of increased exposure during the remediation--that can be a dangerous time.

I don't think it is ever "just tics". I really don't think it makes much sense to say that. When doctors are saying that, perhaps what they mean is, "I have no idea why the patient has tics, but it is nothing that will progress into anything else." I would ask, if the doctor has no idea what is causing it, how could they conclude it will not progress into more? That said, I do hear there are kids who develop tics that do go away as they mature, so I am sure that can happen. I imagine in a number of these cases, it is something structural going on related to bone growth, perhaps causing nerves to be pinched which cause the tics.

I would be surprised if a quality TMJ specialist is not familiar with tics being helped by their service. Ideally you could find someone familiar with that.

I'm one of the people that tried this in 2009, via Dr. Sims in Maryland. I got a device to wear that adjusted wear the jaw closed. The idea was later on, if it worked well, adjustment of bones would take place for a permanent solution. I think for someone with a true structural issue causing TS, most quality TMJ docs would be able to handle this. On the other hand, I went to a local TMJ doc after getting this, to talk about long-term adjustments, and he said he would not have given me as much of an adjustment. Dr. Sims adjusted it to the point where the mouth was very open, and by all measures, the adjustment was beyond the "right" amount. However, that adjustment was necessary to obtain the relief I did from the device. You can read that long thread below, and see it was helpful for me. However, it was not the ultimate answer. It turns out I had lyme disease, and after treatment for lyme disease, the device is no longer helpful for me. Lyme infection of the TMJ can make the joint sensitive, and perhaps that is way the extreme adjustment, where some nerves were probably never being irritated even a little bit, was helpful until the infection was treated. So the mixed feelings I have answering your question are, for a proper adjustment, a quality local TMJ specialist should work. But, to obtain the most short-term relief, regardless of the actual cause, someone like Sims could be better.

I had that many years ago. That is what it's saying, except I think it is saying that with respect to particular bacteria it found, I believe it lists the bacteria it is referring to. So, I don't know that it means everything will be resistant to those things. Still, given your experience, does make you think about trying something different, eh?

I have lyme and was considering pandas for a while, but appears probably not pandas for me. But, I really didn't notice anything beyond the extreme tiredness--now, that can be looked at as a lyme symptom. I do use other such "EMF protector" devices, and have experienced a slight increase in symptoms initially, so I have had that type of experience in the past, just not this time. This was longer ago, and I don't remember the details as much, but very likely had headaches for a few days or something like that.

I just recently purchased some of their things, so it is good timing for you to ask the question. Tired and sleep and more tired and sleep, lots of it, is what I experienced. Got the "home protection system" and pendant, on a Friday, and spent the weekend laying around on the couch, probably sleeping half the time, before moving to bed and sleeping for the night. The following week, went to work, but very tired during the evenings. After this, I ordered the "Nova" to add to the pendant, and, again, a few days of lots of tired and sleep (not as much as before, but still a lot).

Gosh, I dunno, I have gone through this question for me a while back in the event I didn't get better, how about customer service rep -- I would think some of these jobs you could do in your own home on the phone? That's sort of working with people? I know there is also at least one company that does tutoring over the internet, perhaps that could work? I just want to ask, as I see reading just a couple of your posts, a number of similarities between your symptoms and mind, have you considered lyme disease as a possible cause of your symptoms? I have the TS diagnosis, sound sensitivity you describe with the music, food allergies, bad reaction to a psych med, OCD nature (although this one is more commong I imagine). In the end, all of my myriad of symptoms are improving with treatment for lyme disease. Lyme disease is one of those where there are two schools of doctors--most doctors think it's almost impossible to get and easy to treat, and then a small group of doctors (ILADS members) think the opposite and really know how to diagnose and treat, so this results in a situation where people can be sick for years without any doctor seriously considering it.

Sounds like the bugs responded to the azith by fighting back and perhaps changing into different forms, as lyme is known to do.

I had pretty bad insomnia that is getting pretty close to normal these days from lyme treatment. Insomnia is pretty common in lyme.

The things that sound a little different from PANDAS to me are: - for dd, the slow ramp up of symptoms (more like growing of bartonella coinfection than PANDAS flare) - for ds, soreness (do you mean muscle pain, which is a lyme symptom?) Dr.K. is incorrect about the rash aspect of things. I don't know what "negative test result" means, as some people have multiple lyme-specific bands show positive and then the doctor calls the test result "negative". What lab, what were all the band results for igg and igm? While the PANDAS docs seem very well intentioned, they simply are not knowledgeable enough about lyme to be giving out any advice in that area. In my opinion, anyone with a known tick bite and then PANDAS symptoms that start at any point after that should be assumed to have lyme disease until proven otherwise (where a negative lyme blood test is NOT considered proof). IVIG is not really contraindicated in lyme, it wouldn't be a horrible thing to do for lyme, it would probably help, although perhaps the benefits would not be lasting if comprehensive lyme treatment is needed and not given. For a lyme patient, IVIG is likely to be more helpful as a supplement to treatment rather than the only treatment, and perhaps is money not spent as efficiently as possible if done alone or too early in treatment, but again, not horrible. Of course, IVIG does introduce the possibility of getting babesia or other infection, and it will make any subsequent lyme testing more questionable than it already is. Regarding your husband and the costs, below is a quote from the link below: "According to a 1998 study (adjust for inflation), treatment for early Lyme disease averaged $161 per patient. A patient with longstanding Lyme disease spends an average of $61,243 per year." While you are, of course, way too late for the $161 per patient, all I can say is, there is a lot of money at stake, the cost of delay is real. http://sites.google.com/site/getitrighttreatthebite/ticks/treat-the-bite

Ped's wrong on all counts ... 3 strikes and he's out? http://sites.google.com/site/getitrighttreatthebite/

For those not getting insurance coverage, it is available from directlabs.com for something like $135, they supply the prescription, and then the test is provided through LabCorp.