lfran

So sorry to hear this. One thought -- We are all strep carriers in our house, but when I got actual strep this winter, penicillin didn't help. They put me on cephalexin and that did it.

You can buy a magnesium sulfate cream which is supposed to be very helpful at getting magnesium into the body. Or you can make your own from Epsom salts, but I never had any luck with that. Magnesium is supposed to be well absorbed topicaly. Kirkman makes the cream, I think. I think Magnesium is supposed to be important, because it is what the BB bugs feed on, so they use a lot of it up in Lyme's cases....but then, aren't we just feeding the bugs if we supplement with Magnesium?

If you have unexplained tremors, you might want to consider the possibility of hyperthyroidism, which can cause hand and arm tremors. Kids can get hyperthyroidism. Here is a website for test recommendations: http://www.endocrineweb.com/conditions/hyperthyroidism/diagnosing-hyperthyroidism-overactivity-thyroid-gland It's an easy (and I think not too expensive) blood test. Make sure they test T3 and T4 along with the TSH. There is some difference of opinion as to normal levels of TSH. I am hypOthyroid and always feel best at TSH of 2.0 or lower (as do many patients). The "published" range of normal is higher but a lot of specialists agree with 2.0 or lower. I have been cautioned to look out for tremors if my medication pushes me into a hypERthyroid state.

So, so sorry. You are in my thoughts and prayers.

Thank you, everyone. That's very encouraging. I really appreciate it.

There have been a lot of posts recently about problems with Lyme treatment, herxing, backsliding, etc. DS9 is just about to start. His tics are very frequent right now -- every few seconds. It's been this bad before, but not for a long time. My question -- given your experience, are you glad you went down this treatment path? Thanks.

This is discouraging/frightening. I am just about to start Lyme treatment for DS9. He is postive for lyme via urine antigen test, equivocal on WB. He has been doing pretty well the last few months, so was holding off on treatment. Last few days, huge increase in tics. One example, he plays an instrument, and couldn't practice last night because tics were so high. Just sent off blood for coinfection testing yesterday. BUT...also had cransiosacral therapy the morning of the day the tics started to increase...and there are people out there who think that neck/jaw misalignment plays a huge role in tics/tourettes. So...could that have triggered it? When he was on zith/augmentin last year for possible pandas, he initially did worse, then started to "reminisce" about tics and fears that were gone. When we had to stop the abx, there were huge emotional repercussions that lasted for months. Panic attacks, anger, etc. WHYYYYY do our kids have to go through this??? And my insurance won't cover any of this -- appointments, meds, etc, so every path we take has to be thought out soooo carefully. And my son is sick of being taken to doctors. And there is NO CLUE which of the 15 different paths is the right one. Sorry. I too have been up in the middle of the night recently. Any encouragement is welcome.

Wilma, If blood tests are becoming a problem, there are a couple of urine tests you can do. One is usually done after provocation with antibiotics or herbs (the DOT BLOT) and the other is done without antibiotics, I think (PCR). Igenex runs both of them -- you can call them and ask. Like the blood tests, they don't always show positive -- I think only 30% of people with Lyme show positive, but it's noninvasive and not *too* expensive. They like 3 samples, to maximize catching the antigen, but you can do one or two -- we did two, at $70 each for the dot blot. Not sure what the PCR cost is. My DS9 took the urine dot blot after a course of antibiotics and came up positive, even though his western blot had only a couple of bands show. (Actually, one of the two samples was positive, but that's considered enough). Just a thought for an alternative test route. If you do the IVIG, this is a time to have blood drawn without another poke. The doc can order the labs and then the nurse, or whomever will get the blood after the catheder is in and before the IV. We have had this done for this very reason. An idea. Dawn

One thought re: the diarrhea. I talked with a compounding pharmacy about how to best give the meds and they said liquids are absorbed more quickly than pills and thus not as much of them reach the guts, so they are thought to be less difficult on the GI tract. Just a thought...

Just following on the EE info, which I just googled and have a question. For the last 25 years, every once in a while,when I am eating, my throat constricts for about 1.5 seconds. Totally closes, then it opens and everything is normal. Really scary, but have learned to live with it. Always when eating bread or a bagel, never with anything else. But, I can eat these foods hundreds of times and be fine, and then wham! it happens. Only occurs about 5 or 6 times a year, so not frequent -- but for 25 years now! Not classically allergic to wheat or milk -- had those tested. Does this sound like a variant of EE? Thanks!

Sorry, I know I have seen this info before, but can't find it. I want to do coinfection testing: Babesia, Bartonella, MycoP, and Erlichia Which labs are best for which? Igenex has coinfection panel for Bart and babesia. Should I go there for that? Is MycoP lab-dependent? Otherwise, my HMO lab can do it. Who does erlichia well? Any other coinfections to request? I welcome any advice. Thanks!

So sorry to hear what you are going through. I don't have an attorney referral for you, but here are some links that might help you. 1) The courts maintain a self-help website with information at http://www.courtinfo.ca.gov/selfhelp/ 2) Many courthouses have Family Law Information Centers where you can get free information about procedures and perhaps referrals. If you post where in Southern California you live, I may be able to tell you if your local courthouse has one. 3) Los Angeles Superior Court also has a Family Law Facilitator's office. Here is information: http://www.lasuperiorcourt.org/familylaw/sup-facilitator.htm -- you can also check out www.lasuperiorcourt.org/familylaw/ 4) The Los Angeles County Bar Association gives referrals and may be able to help you. 213-243-1525 (www.lacba.org) 5) The Harriet Buhai Center for Family Law provides legal assistance for family law, domestic violence, and child support issues if you meet certain income limitations. Their info is: http://www.hbcfl.org/programs.htm If you don't live in LA, you can also check if your county courthouses have the same types of programs. They should. I hope you are in a better place soon.

I've been using banana and frozen strawberries. If you're okay with dairy, adding kefir or yogurt can help thicken it. Otherwise, I've heard that crushing ice will give it the smoothie consistency.

Sorry, I goofed. My canned coconut milk has no additives; the fresh from Whole Foods is from So Delicious and does have some additional additives. S

Within the last couple of weeks, I read about a test that could help the doctor figure out which antibiotic is most likely to help each patient. I can't find that info again!!! Arrgh. If I read it here, can someone redirect me to the post? Or, if anyone knows anything about this, can you let me know? I think it was a blood test...not sure. Thanks!

Whole Foods also has fresh Coconut milk that has no additives. Thank you.

And one more thing -- I was reading an odd book about healing Lyme naturally and most of it didn't resonate with me, but they said that coconut milk had a lot of a particular substance (forget the name, sorry) that was very helpful against Lyme. Not sure how much I believe it, but hey -- I can buy it at the grocery store -- so I've been making smoothies and milkshakes with that. But that is just the last two days -- way after we've seen the improvements I posted about. I just thought that maybe the coconut milk can help us get at that last 5% or so. (I also have a standing appointment to start DS on abx if his symptoms flare again -- I'm definitely planning to go that route when needed).

Sure -- although, uncharacteristically for me, I didn't do tons of research first. I just went to the health food store and made a choice. This is what I chose: Jarrow Formula decaffinated green tea extract, 500 mg capsules. Paradise Essential Turmeric 16:1 concentrated potency, 250 mg capsule Source Naturals 1000 mcg methylb12 sublingual Our doctor said it was okay to give him the adult dosage (he's almost 90 pounds), so I give 1 or 2 of each of them each day (split am and pm). If you try them, let me know if they help. The first two are supposed to be strong anti inflammatories.

31 and 39 are both considered to be specific for Lyme, but an IND stands for Indeterminate -- that is, they saw some reaction, but not strong enough to be considered a true positive. However lots of people who have Lyme will only show an IND, so a good LLMD can help you sort this out. Igenex itself says that the lab results are there to support a clinical diagnosis, not to diagnose the disease itself. Igenex will also run a follow-up test called a 31 kDa Epitope test, which I believe can be used when a 31 is IND. It helps to tell if the 31 IND is really from Lyme or not. You can call them at their 800 number and ask them about it -- they keep the blood for 3 months from the DAY IT WAS DRAWN (not the day you get your results) so that follow-up tests can be ordered on that same blood. They also run other tests on urine and blood that sometimes they recommend you can do as a follow-up (or that your LLMD may want to do). For example, my son had an wishy-washy Western blot, but showed up positive on a urine test after a course of antibiotics. But not everyone will - -it's kind of hit or miss, and a miss doesn't rule out Lyme.

Sort of. Western Blot is a type of test. Several labs will run a Western Blot on blood, but Igenex is considered to be the best. However, Igenex also runs a lot of other tests besides the Western Blot. Does that make sense?

The auditory program was recommended by an OT. I had noticed my son saying "what" an awful lot, and he seemed hypersensitive to some noises, but his hearing tests were normal. We took him in for an auditory processing evaluation, which is different from a hearing test, and they said he had a large discrepancy between his two ears in his ability to process language, which made him a candidate for the program. The program is very simple. He uses special headphones (about $60) to listen to 30 minutes of music 5 nights a week. There are 10 CDs in the program (you go 1-10) and then you go backwards 10-1. It is all specially chosen classical music, with nature sounds (high pitched bird calls, etc). I would NEVER have believed that something so simple would make such a difference, but I truly think it did. He hardly every says "what?" anymore -- and he was doing it constantly. He is no longer bothered by specific sounds that trigger tics/compulsions. His teacher says he is enormously more focussed in class and that whereas in the past she needed to go right up to him to get his attention, now she can call across the room and he hears and attends to her (it is an open, projects-based clasroom, with kids working on projects anywhere in the room). He was always a well-motivated child -- I think he just didn't have the tools to properly attend to his surroundings, and this has helped. When I told the OT what the teacher had said, she says she hears that from parents all the time, and that the teachers ask "what new med did you put your child on, that he is so much more focussed?" (I am part of a large HMO and I estimate that they have about a hundred people on this program at any one time, at just the clinic that I go to, based on the size of their lending program. We had to wait two months for our turn to come up to start it). My HMO offered it for free as a library exchange-type of thing, exchanging each disk for another one week by week. It is also available for sale, but I think you need an OT's referral. lfran -- i'm glad to hear you are seeing such good results. hope it continues. can you elaborate on the auditory program? did a professional recommend it specifically for your son? did you just think it may be something helpful? what were symptoms before/after that you think it addresses? thanks!

Also wanted to add that in our program, most kids are able to advance to a new belt level every two months or so, so there is a lot of built-in motivation to keep at it -- and there are a LOT of belt levels. It's a good reward system! (Also, a lot of Tae Kwon Do studios have a good behavior program that focusses on behavior at school and home, and is part of the belt system -- it's amazing how more motivated my two became about chores, cooperation, and respect once they realized that it was part of their belt promotion program!)

I have been waiting to post this for a bit, to make sure it lasts, but I have seen such an amazing improvement in DS9 in the last two weeks that I wanted to post. I have not seen him with this few symptoms in years. His anxiety is way down (still a little, but 10% of what it has been), compulsions are almost nonexistent (may be gone), and his tics are down to a few a day (at their highest they have been 10 a minute. We have seen tic decreases before, though). He is also much more cooperative and focussed. He was on 3 weeks of azith in December, but Jan and early Feb were very high symptoms. Since then, and when I started to see the improvement, is when I put him on a couple of the supplements that I have read about here and there (including Dr. Burrascano's 2008 paper), and with the okay of his doctor. Currently he is on green tea extracts (supposed to be a very potent anti inflammatory), turmeric extract (the same, and also an antibacterial?), and methyl b12 sublingual. And an okay chewy multi vitamin (no minerals, just basic vitamins). The other thing we have done is put him on a listening program for auditory processing issues for the past two months, and that has also helped enormously. He says that some of his compulsion triggers are particular sounds, so some credit may be due there, as well, for making it easier to process auditory stimuli without it triggering a reaction. (I have been so impressed by how this has helped him that I have been recommending it to several of my friends whose kids seem to have similar auditory issues. The one we are using is called The Listening Program.) I hope I'm not jinxing anything by posting, but I have been amazed and wanted to share this. If anyone knows anything bad about these supplements, please let me know. Otherwise, I encourage others to try them. It has been a long 3 years for DS9, and this is the most optimistic I have ever been. He definitely has lyme -- tested positive on the urine antigen capture test (DOT BLOT).

You are strong and amazing and I think about you every day. Hang in there. There is an old saying -- the darkest hour is just before dawn. Your dawn is coming soon.