JuliaFaith

So glad you are finding some answers. This is such a long journey but the more we find the closer we are to healing! I only hope all of this makes us and our children stronger, wiser, and more empathetic to others. Thank you for sharing and best wishes.

Wish you well on the Babesia treatment! Also, best wishes for the trip to Seattle and the seminar. It should be very interesting. E-mail me if you need anything while at the seminar as I live in the same town that it is being held (only 10 min. away). Have you done any testing for mold? Just a thought since we have arrived at its' doorstep and ds has had little relief from other treatments for PANDAS/LYME so far. Just hope we are at the end of these new discoveries...

Your welcome. Best wishes on your journey.

Blood draw today consisted of: C3a, C4a (both lyme markers as well), TGF Beta 1, MSH, VIP, TSH, Free T3, Free T4. We had to go to a GOOD LABCORP to get all of these tests done except for the C3a & C4a which doctor had them sent to a Jewish lab at the last minute (noticed that Dr. Shoemaker uses the same lab for these tests as well). Will see if I can find the complete name of the Jewish lab in the book, however, LABCORP seemed to be very familiar with the lab as well and were forwarding blood samples to them.

Paid for the test with credit card when I ordered test but was not put on card until results sent via email. ($290)

After 2 weeks I called the lab and he was surprised that I had not received the results via email and sent them again the same day. It took me a while to figure out that I can do the test myself and send it into the lab. You can just call the lab (# at www.mycometrics.com) and order the packet. There are two types of test, one for wood flooring, and one for carpeting. Since 1/2 of our test was wood flooring we just did the flooring test. You just take a dusting-type cloth and wipe down areas in your bedroom and main living area only. The vacuum one, you vacuum a set area in those two rooms and send the results into the lab.

We did all the mold removal first but not sure if all the steps were followed for cross-contamination where the mold can spread to all parts of the house. We are having heating vents cleaned this week while we are cleaning each room. We are also getting rid of the last bit of carpeting in our upstairs in case that is harboring it. With a basement, I wonder if we will ever get the mold count down low enough (lab says 2 or lower - ours tested over 10). The MARCONS are also discussed in Dr. Shoemaker's book. It stands for "multiple antibiotic resistant coag neg staph (MARCONS)."

Just found a quote from the book "Surviving Mold" by Dr. Shoemaker on pg. 12 where he says to a patient "Delaney did'nt have a positive visual contrast sensitivity (VCS) test-it's unusual for the VCS to be positive in a twleve year-old-but she has lots of symptoms and exposure." The VCS is, of course, the eye test. This book has a lot of information but no index so really difficult to find subjects after reading through the book.

I believe that it says either on the website or in his book that the eye test is recommended for adults only so you may want to double check that. Hope you have some resolution! DS has not taken the eye test. We are doing the blood testing today.

Thank you - very interesting article.

DS13 had T&A surgery 3 weeks ago and survived it. Was very traumatic on top of everything else but he has finally turned a corner and is ready to feel better. The tonsils pathology report came back fine (whatever that means - I think they just looked at them and that was it). They were enlarged and severally pitted to indicate multiple infections and adnoids were enflamed. What is surprising is that he has never had any strep throat or sinus infections that we know of. He has had a sore throat during this last year of feeling poorly. Probably a good thing they were removed. While he was asleep, had ENT do a deep nasal culture testing for MARCONS. This came back positive! Was a shock to our doctor too because she said it usually takes a while of testing to get a positive. She believes it may be because he was asleep, they could go deep (yuck!). He is now on a nasal spray called BEG and recommended for treatment by Dr. Shoemaker (see "Mold Warriors"). Also still on Augmentin from before which could also be additional treatment for this as well. In the book "Surviving Mold" by Dr. Shoemaker I believe he says that only people with compromised immune systems mostly get this superbug. Also, there is some additional discussion on super-fungi being created by herbicides/insectides and they somehow get together with bacteria and form a new superbug. That is as close as I can get to describing the process. We did get our DNA ERMI mold testing back as well (thank you Philamom for reminding me). Our count is pretty high which was surprising since we had removed all the mold (we believe) in our house in the last 10 years and thought it was all gone. The testing center recommended that we clean (vacuum, wash, vacuum) the entire house and wait 2-3 months and retest. Oh joy! What fun! He thought that maybe there could be cross-contamination so will try that and see what the results will be. DS has blood word to do along these mold lines as well. They are: C3a, C4a, TGF Beta 1, MSH, VIP, Free T3, & Free T4. Will see what that turns up. These are also recommended by Dr. Shoemaker as well. Anybody else have experiences with any of this? I wonder how many PANDAS/LYME patients have mold problems as well... It is like peeling an onion, one layer at a time, just hope for some good days sometime soon! Many of you can probably relate as well.

It seems as though we may be treating the lyme and PANDAS at the same time. Others may be able to give more insight into this. We still visit the PANDAS dr. about once every 3 months just because my ds loves to see her but she really does not have anything more to offer my son in the way of treatment. This is why we found a LLMD and changed our course.

If you want to venture out and see an ND, there are homeopathic UNDAS (not sure which ones) that cleanse the liver and kidneys. Also, my DS13 is using a nebulizer with "Tri-Quench" from Scientific Botanicals, Inc. 4 drops with water in the evening for Myco/Chlam and his lungs are slowly getting better. It has iodine in it which is an anti-bacterial. His ND says it will take about a year of treatment to heal. Since treatment started, he has had no cough (had a chronic one before), and a tic in his throat area has disappeared. Hope you find some answers soon!

Thank you for your story. It sounds like having the tonsils out can prevent further havoc on the immune system with continuing infections/bacteria so may also be beneficial in the future. Right now we are just hoping it will make his treatment shorter and some more advanced short-term improvements. Who knows, maybe your daughter's treatment will be faster because of the T&A. So glad you had 9 months!! Am also looking forward to full recovery for your daughter as well.

Thank you for your support, Susan. Will wish the best for your family! Julia

DS13 had tonsils out last week. Decided after a year of not having a lot of improvement (with 2 doctors) we should do the T&A. The dr. said that she would only remove the adnoids if they looked bad. T&A was done and we looked at the tonsils. They were enlarged and looked like they had been thru several infections. His adnoids were inflamed so they were removed as well. The tonsils were sent to a lab. LlMD also had a deep nasal culture testing for MARCONS, coagulase negative staph, and mold growth (inexpensive testing but really great to rule out certain infections) while he was asleep (my idea). Apparently, per DH it can be painful to have done while awake which is usually how it is done. On day 9 and recuperation is slow and painful. Have not notice any PANDAS-like behaviors creeping in which his LlMD suggested was possible for the first 2 weeks. He is still taking abx, slippery elm, homeopathic 'balls' which he says are very helpful, and his non-blood thinning protocol for Llmd. This son has NEVER had strep or any problems that I knew about. He has had a sore throat off/on for the past year of feeling ill. Next week, we find out about our ERMI mold testing results, T&A lab results, and continuing protocol treatment for Llyme etc. Wish us luck with the mold piece please!!! Will post next week after visit if we survive.

My ds has continually been a bit different than a lot of kids on here so here is his experience. Once diagnosed with lyme was just on herbal remedies for 3 mos. with very little improvement. Mostly just increase in energy that we notice. His symptoms for the last year have been flu-like so that is our starting point. He did have some small flare-ups in the middle of the night for 2 hours then 1 hr. Was justed started on abx and a cocktail that is herbal for babesia and his flare-ups went from 5 days, to 4 days, to 3 days, to 2 days, and then we had to stop the 'cocktail' so he could get tonsils out. His ND said that getting the tonsils out will speed up healing for him. When he got tonsils out, his Dr. had the surgeon do a nasal swab for MARCONS, coagulase negative staph, and mold growth. Very inexpensive way to see if there are some things going on there. Apparently, these develop the biofilm (i believe) and are difficult to get rid of by abx alone. My son has never had strep or sinus problems but at this point we have to look at as much as possible to get him well again (it has been a year). The ND is also having us look into mold. We do not know of any in our house but did the ERMI testing recommended by Dr. Shoemaker (author Mold Warrior). It was $275 and uses DNA testing which is very easy to do yourself. The results are based on an average amount of mold in homes across the US (I believe). My son keeps testing for mold in the art testing so we are pursuing it just to make sure it is not an issue in our house. Reading about mold has been an eye opener, at best. The symptoms can be the same as lyme and sometimes people are diagnosed lyme when it is actually mold. You will have to read one of his books to understand all of this (easy way to rule it out anyway ). Best wishes on treatment and hope some of this helps.

Thank you for providing this newest link. This provides another possible variable that we could be missing in our diagnosis/treatment.

http://www.publichealthalert.org/pdf/2007_06.pdf

Currently reading his book "Surviving Mold" and ran across this lyme video of him: http://www.betterhealthguy.com/joomla/blog/202-dr-ritchie-shoemaker-video-on-lyme

This looks soooo interesting. Thought seriously of going myself but decided against it. Glad to hear that you are going. With all of your knowledge about this, have you thought about getting your ND and treating people?

My ds13 was on Neem (BioPure)along with 4 others things which his Dr. just told us yesterday is really good for Babesia. She has my son taking this aweful-tastin 'cocktail' that has Neem, Virescence, quintessense, artemesin, grapefruit seed extract, and 1 raw eggyolk (local, organic). He gets 1/2 in the morning and 1/2 b/4 dinner. It really tastes bad. This is just part of his protocol. He is off just the cocktail for 2 weeks until tonsils are removed because it thins the blood. He has only been on abx for 1 month (out of 5 months) and is supposed to continue that for 2 more months. Everthing that I have read/researched really supports the use of these natureopathic/homeopathic treatments and I never really knew about them before all this started. Our Dr. also does the ART testing which is quite amazing. Best wishes on your treatment!

Just today, our dr. said that her 'cocktail' which has Artemesia in it is really good for Babesia. Not sure how this one ingredient (there are 5 others) contributes. Keep the healing coming...

This is a 3-day intensive class in Redmond, WAshington. The cost is $695. If you would like more info. just e-mail. Guest lecturers: Susan Marra, MD and Steven Fry, MD