MichaelTampa

For those wanting the tonsils out to clear out of infection, but also still wanting tonsils to do their job later on, remember, there is kryo therapy available, so far as I know just available in Germany, where tonsils are frozen off but then regrow.

My doc used alinia for it

Joint pain, particularly migrating joint pain, can be a sign of lyme disease.

Remember the IGG is measure of antibodies the person is making, and for a lot of lymies the most sick people have fewer of these, body can't do as much. So maybe the initial increase you are seeing is a sign that something is working but there is much more work to do?

The lymenet.org message board might be able to help. They have a "seeking a doctor" section, and a larger audience where they might be able to suggest someone, and also give experiences regarding Dr. F who you have asked about as if you are considering him. The doctor you have been going to simply is not an educated lyme doctor (most who go by the category "infectious disease doctor" are not, so no surprise there, the surprise is he gave you 3 months worth of abx before inappropriately concluding it can't be lyme).

I can't say this absolutely for sure, but my sense of things is that doxy alone is not going to get someone well if they have had lyme disease for a while. I don't think that's a typical successful protocol. Doxy is supposedly very helpful for someone who just got a tick bite and is hoping to prevent getting serious lyme disease, but once you have that condition, it's a whole different situation. Who experienced is your doctore at treating lyme disease?

The need for GcMAF is really indicated by a nagalase test, as too high nagalase levels can tell your body not to bother making the GcMAF yourself. I have seen progress on that nagalase number. Those tests take about a month to get results, so always a bit delayed, but based on progress with testing and additional GcMAF injections since then, seems my nagalase levels could be expected to be around normal if extrapolating results ends up being accurate. CD57 is more overall lyme, and I have just been hoping this is the last problem to take care of to get over the lyme hump, it may or may not be. Possible I suppose the body thinks it doesn't want the homeopathic because it can just wait for the injections. I dunno though, it had been 16 days since an injection when I started back up, so that is not my guess, but who knows, for sure, yes, it could be a different result with the homeopathic given I have gone so far already with the injections. My CD57 has cycled up and down between the 30's range and the 70's range, last one was 74. Normally it has been lower when I have more of a war going on killing things, and higher when less fighting going on, not sure if I can read too much into the recent score of 74, been around there plenty of times. I could never learn the muscle testing, that is the more common approach, but managed to learn with a pendulum. Certainly you can learn to do the muscle testing on other people such as your son, that is what so many practitioners use. Hopefully you can find someone interested/willing in teaching you.

Dr. Minion may have a good imagination to just makes things up left and right, my goodness. Well established that anxiety/stress can make tics worse. Look, anxiety/stress makes EVERYTHING worse. It's something a lot of TS docs would tell you, that this can be how it takes longer for people to get diagnosed with TS, is some stressful event happens, then tics appear, and now everyone assumes that it is just an emotional response to the event and once the person gets over the event they'll be fine, aka, it's all in their head, aka, conversion disorder. Eventually people may start to question or realize, no there was a real problem before the event, just that the event made it worse.

Thank you so much Michael for this information! Sometimes it gets tricky trying to figure out what all is going on and there is only so much time during a visit to get everything in that needs to be addressed. So good to hear about your GcMAF injections working for you. Will really be looking forward to your progress report! Will send healing thoughts your way. Well, I failed my CD57 test again last week. I did start getting more fatigued again that week as well. After 16 days off the GcMAF injections, I tested for and took very large amounts yesterday and today. So this continues to cycle off and on for me. Feels a little better to still need this with the failing CD57 test, at least can still hope this will push me over the hill I'm trying to climb here. Also want to point out, I now have the Homeo K remedies, and do not test that the Homeo K MAF would be at all helpful, even during these days and moments when I test that the GcMAF injections would help a lot. So, while the Homeo K MAF might be a nice alternative for some, looks like for others the injections can help where the homeopathic cannot.

It wasn't clear to me reading it, but it sounds like you're saying that 2 summers ago he got lyme disease? What makes you say/think that he got lyme disease then, as opposed to getting it at any other point in time? Was he bit by a tic then? Did he have a lot of other symptoms at that time that went away with treatment? There are many lyme symptoms, I believe there is a thread at the top, perhaps the helpful links that lists many, and you can also google to find some. As LLM suggests, it would be good to take a look at that and see what else looks familiar. I am someone who was diagnosed with Tourette's as an adult before figuring out it was lyme disease. I am in the camp that Tourette's is always something that is caused by something else, in other words, that there are reasons for the symptoms, which sounds simple when said in certain ways, but is contrary to what most docs would say is that it is always simply just something you have and that's it. Sometimes that cause is related to structure of bones, sometimes it is from lyme disease, there have been cases caused quickly by acute heavy metal poisoning and cured almost as quickly when that was addressed, and certainly there are other causes as well. You don't mention what type of lyme test shows negative, but if it is an ELISA style test, realize that does not mean much when those show up as negative. The western blots, while they have many problems with them, can be more telling particularly for someone who is not terribly sick, but you have to look at all the band results and not just go why if there is an overall "negative" showing somewhere. So you might look up what you really have there. Here is the link to the "helpful threads/links" where if you go down a few posts there is a list of symptoms you might look over and consider. http://www.latitudes.org/forums/index.php?showtopic=10804

I just want to give my opinion that I do not think a rheumatologist nor a PANDAS expert is an appropriate place to test for lyme. I think a lyme specialist is the only person that is going to have enough experience to do that justice, given the complicated nature of how test results need to be read.

While your child may well have PANDAS, when you start mentioning undifferentiated connective tissue disorder, severe fatigue (unable to attend school), Aspergers, joint pain, peripheral neuropathy, and upper and lower GI issues, those things just scream out loud to me that lyme disease is the underlying issue. Hopefully you will find a doctor versed in that. Note that you can also read how lyme disease is sometimes misdiagnosed as lupus, and how lyme disease can be passed from mother to child in uterus.

New doctor is simply corrupt. If you have time aplenty, of course do some research and find plenty of real proof to the contrary. There may well be better ways to treat than doxy, and there may well be other things going on (so that it is not JUST lyme), so do be open to those possibilities, but would be more worthwhile to consider those possibilities with someone honest.

I would have thought that too. I took this 5MTHF for a while, but am off it. I use energetic testing that indicated it would be helpful and now that it would not be. Perhaps this is a sign of being in better health and having less to detox or less conversion needed. I have one copy of each of the two genes that are mainly tested. I have read these mutations impair certain pathways, slow things down or limit things, but do not absolutely mean they do not work at all. And of course having two copies of a particular mutation is going to be much worse than having just one copy of it. I think it was something like you work at 50-60% efficiency with one mutation of a gene, but 20-30% efficiency with two mutations of a gene.

For this, I have taken Thorne's 5-MTHF, see below. I wouldn't think that methyl-B12 would get at the heart of this, as I understood it is a problem with processing of folate. The MTHRF stands for methylenetetrahydrofolate reductase, again relating to processing folate. I know there are many other supplements targeting this issue, some containing additional items like methyl-B12 and/or TMG (trimethylglycine?). I see why these additional items could help in restoring balance when starting out with 5-MTHF, but not sure why they would be needed long-term once balance is restored. http://www.iherb.com/Thorne-Research-5-MTHF-1-mg-60-Veggie-Caps/18447?at=0

Bartonella can come back that quick. Some do attribute bartonella to many of the difficult psychiatric symptoms of lyme. As you say, borrelia ("lyme") does not. Whether it's a PANDAS type reaction, I'll leave that question to those more expert on that topic. Maybe you could try a bartonella herbal, such as Byron White's A-BART, as a substitute for the abx, if you're looking for a borrelia culture. Second thought, that would probably kill some borrelia too. Even though they have a borrelia oriented herbal as well, these poor herbs don't always know what we want them to kill. Still, perhaps, something to consider, depending on how important that new borrelia test was to you (I don't know why that was).

The Homeo K OXY is supposed to help with Oxytocin, a polypeptide hormone that acts primarily as a neuromodulator of the brain, say my scribbled notes from the conference last week where Dr. K. spoke about these things. This oxytocin regulates social recognition, sexual reproduction, bonding, anxiety (including that caused by babesia), and the ability to feel empathy. He commented, for example, men with too little will find it very difficult to stay committed to one woman, and in his typical charming way where you're not sure how serious he is or how much he's joking, commented it would be good to be more understanding with men experiencing these difficulties. Yes, the ADH is the homeopathic version of vasopressin, ADH refers to anti-deuretic hormone. My guess is these homeopathics like OXY and MAF work by getting the body to make more of this stuff. The GcMAF injections work more straightforwardly by adding more to the body. It's possible the homeopathics might have an added long-term impact of training the body to make more of this stuff, which could be desirable. Best of luck with all this, the GcMAF injections have been great for me! (I'm feeling I may be done with them at this point, looking hopefully to my CD57 test again next week.)

I would say it's use in the lyme community is too new to make any kind of statement like that. First of all, the real GcMAF has just had limited use in the last year in the lyme community here in the US. I know I have been helped tremendously by it, but still at this point, I can't say it has fixed viral issues once and for all. I am still cycling on and off it from energy testing. I know that a number of people have found the product has caused a lot of inflamation. I think this is from it's strength, it's going right at it and helping the body kill lots and lots of stuff. I have not run into that at all, probably helped in part by energy testing and guided on dosage and timing by what the body says is okay, and also I did IV ozone before that should have dramatically cut down the load as well. But it seems understood at least fairly well, if you have viral issues and a high nagalase, until you really using something pretty powerful, it's going to be hard to get out of that cycle. That's why the comment I made to LLM, and I don't know nagalase is an issue in her case, but just saying, in some instances, you can get in this cycle, you're going to need something strong antiviral to do it. Could be IV ozone could do it for some, or Valtrex, I don't know. As much as IV ozone helped, it got me only to a point and the GcMAF much further. The GcMAF really directly gets at the nagalase problem (if you have it), and it may be that IV ozone or Valtrex won't do that, probably we don't know that at this time. GcMAF has been used in Europe for years, for limited experimentalists of course, on cancer, a disease with a strong viral component. The homeopathic version of this GcMAF, I don't know how long it's been around, perhaps a few months, maybe one doc or so has been trying it with a few patients, I am speculating a little, but it's just a new one on the market now. Some are also getting inflamatory responses with this product too, so, again, be careful with it, everybody, but also know this speaks to its power.

I just ordered some this past weekend, I had tried earlier but couldn't find it available, but it is now, on the europe biopure website. Just got an email yesterday that it had shipped.

Another underlying reason can be nagalase enzyme levels too high. Viruses create nagalase so you vitamin D binding protein (that binds vitamin D with macrophages) is not created in the body. Supplying this protein, by injection, or now available homeopathically to tell body to make it, can solve the problem and kill the viruses allowing nagalase levels to eventually return. This protein is known as GcMAF, for use with injection, but recently available as homeopathic, much more affordable and no injection, through BioPure in Europe as Homeo K MAF. If someone is caught in that vicious cycle, it's nothing lysine is going to fix up.

I have had bad experiences with prozac, although not those you mention. All neuro drugs like that are very russian roulette for people with lyme or PANDAS where crazy things are already happening in the brain. Good things might happen, bad things might happen, great things might happen, terrible things might happen, or any combination. Some have found them helpful, others not helpful.

I agree with s&s

Where do you find the Xymogen brand "Nrf2 Activator? I would be interested in looking into this as well. What are the 3-4 other ingredients in it you mention? Just want to be clear on what I give ds8, don't want to add more than is needed. Also want to be able to pinpoint what is helping or hurting. Here is a link to a bit more information on it. Other ingredients are black pepper extract, broccoli seed extract, green tea leaf extract, and pterostilbenes. Pterostilbenes are a compound in the same "family" as resveratrol. Xymogen does not sell to the public, if you will, but sells only to professionals who then can sell it. It is a very popular brand so many "alternative" health care providers (such as acupuncturists), and even some MD's, do carry and sell this brand. I believe you may also be able to find such a provider that would sell it via internet. http://www.xymogen.com/2008/formula.asp?code=000273

I have tried the Jernigan products. I have tried many many things and they were one of them. In the big picture, they were one the less effective side of the scale compared to many other things, including many herbs. I should say, though, that they were somewhat helpful, just not as much as some other herbs and other things. I have heard of a very small number of people being helped a lot by that protocol. Detox and all that is good stuff and should be helpful, and I think the more someone is lacking that or hasn't done that step yet or much, those products and that protocol may be more helpful, because the detox issue is important and needs to be addressed in one form or fashion.

I feel I was helped enormously by abx I took for perhaps 8-12 months, something like that. I stopped not because I was better, but because it didn't seem they could do any more for me. I have been off them perhaps almost a year now and am doing better than that still. I have done MANY things both before lyme abx treatment started, during, and after that in order to continue getting improvements. I am still working at it. I think all the alternative health care things I did prior to knowing it was lyme at least helped some basic detox and methylation pathways function pretty well, and the fungus was beaten down at least a little bit, and I think all that helped tolerate the abx without much in the way of herxing kind of symptoms. There are so many non-abx things that can also be done to help. Before treatment started, I was off work for months, for the third time in a 4 year period. The first two were covered by insurance as the dx was something more acceptable, something psychiatric. The last one was not covered. As I was finally diagnosed with lyme and just getting treatment, I had been off work a couple/few months and disability was denied and I was appealing and being told I would have to get back to work. The appeal slowed that down a little, and I had 1 month of IV+oral abx before being told to return to work or be fired. I returned to work and it was horrific in terms of how badly I was impaired and how painful and fatiguing it was, but I managed to do well enough to keep my job through that period and to this day. Before that, I left work because employer had installed wireless routers that meant I couldn't have a conversation in there, I couldn't remember the beginning of your sentence by the time you ended your sentence. You might say I was a little bit sensitive to those microwaves. So the abx helped a lot, just in the nick of time as replacing the job would have been difficult. I have stayed at work as I continued to treat and do not have many symptoms these days, although still some minor ones and still working at it.