JuliaFaith

The first thing I wondered when reading your post was if you have checked for lingering viruses which is very common among lyme patients. It sounds like there could be more there yet to be treated. My son's PANDA dr recommended biofeedback to get things working in the brain better. Have not done it yet but maybe others on the forum have. Son will be trying to return to 9th grade this yr after being out for 2yrs. (tried for month last year but similar problems like your son). 19 months of treatment and not all the way there with treatment just yet so will see. Best wishes, will be thinking of you.

If you are interested in a naturalpathic approach, you could read some of my posts. Very few abx, lots of naturalpathic meds and removal of mold. Best wishes on healing.

Tpotter - he has been seeing an ND and has been on Alinia before but his dr's approach is different than most on this forum. Lots of naturalpathic meds, homeopathic, small amount of abx. Muscle testing and lab tests during/after treatment is the norm. Keep healing.

Always wondered why my son was on an adrenal supplement! Had to reduce the amount prescribed by doctor because he just did not feel right on the dosage prescribed (4). REduced it to 3. Seemed to get lots more energy (more than I could handle anyway) when he started on it. When I told the dr. this she thought maybe I needed it too.

On the mold side, detox, detox, detox...we use epsom salt baths, detox deoderant, salmon oil along with chlorella. My son also presented with painful stomach issues so have used many different probiotics (have always been on at least one). PM me if you want chlorella brands that have tested well. Make sure the salmon oil is good so you do not add to the heavy metal load. Michael - interesting that you are using olive leaf. It was prescribed for my son as an anti-viral. Gaia brand Olive Leaf was prescribed by son's dr. Sending you and your family healing thoughts!

After over 2 yrs. of flu-like symptoms and initially some OCD/anxiety issues my son is testing really well and actually starting to feel better (actually is saying it now!). So...he wants to get in shape again and has been riding his bike to friend's houses. Yesterday, a stranger finds him passed out on the trail he rides. When I get to him, he keeps repeating the same thing but is awake. Get him to the ER and he has a concussion and broken wrist, along with half his face pretty scraped up. He did have a helmet on which actually helped a lot. On the health side, he has an inner ear infection that will not go away, so dr. suspects staph and/or lyme. So he is on Rifampin for a month or more for that and still going steady with the Valcyte. But he is actually feeling better... Oh his nagalese came back at 1.3. Dr likes to see it under 1 but since son doing so well will just continue with current treatment and test again later. This is instead of doing gcmaf injections.

The dr's in list are all Level 3 practitioners.

Thanks tpotter for the add'l info.

Oops - one in Canada too!

Dr. K Academy sends out e-mails on classes on muscle testing and they produced this list of doctors that are now certified in case anyone is possibly interested in finding someone in their area. Jens Riogeist, Ph.D.,LAc Newberg Natural Health Center Newberg, OR 503-538-5128 www.newbergnaturalhealth.com Melody Hart, ND, PhD The Hart Center for Alternative Medicine Geneva, IL 630-262-5055www.hartcenter.com Autumn M. Frandsen, NP The Center for Natural and Integrative Medicine Orlando, FL 407-355-9246www.drkalidas.com Donna Zaken, RN, APRN Integrative Lyme Center of Rhode Island Providence, RI 401-585-7877www.donnazaken.com Dov Widenbaum, DC Widenbaum Chiropractic and Wellness Center Suffern, NY 845-425-7777 www.widenbaumwellnesscenter.com Julia Marino, NDP, DCTP Natural Health Innovations, Inc Houston, TX 713-581-8108www.naturalhealthinnovations.net Zoya Voitenko, ND Stop the Clock Naturopathic Clinic Mississauga, ON Canada 905-274-6400www.stoptheclockclinic.com

Thanks Tpotter. Just saw that it has been 2 years since I first started on this forum...and a lot of you have been there the whole time along with me. Really appreciate your support and hope that I can return the favor as much as possible. Take care and keep healing!

My ds14 has done an on-line free public school for 2 years now. We are hoping he will be ready for the local school this next year. It is called 'Virtual Academy' which is a private paying school, but in some states they have a free, public, part of the school as well. Not sure which states those are offered in. Not sure if they start at the kindergarten level either. Let me know if you want more info. They have advertised on this forum in the past. Best wishes on healing.

Thanks Philamom and S&S for your support. Not holding my breath...don't want to expect something and it goes away. One day at a time. Thought of another variable - DH just started abx for Mico. for 1 month about a week before ds started staying at baseline. PANDAS is what I have no idea about now that he is healing from most of the other stuff. Has not had any 'PANDAS' episodes since starting treatment 19 months ago. Although, coughs seemed to be his trigger and he has not had one since treatment started. Keep healing!

Amoxicilin, but how would that affect the viruses? If he still has mico. going on, that might be affected by the abx.

My ds has been on Valcyte for 5 months now to get rid of viruses (HHV-6) that would not deactivate. First 1 1/2 months on the med. he felt the same but since then he has had very few 'baseline' (best he has felt in 2 yrs.) days-only a day a month. Flare is when flu-like symptoms ramping up. Now, 2-3 weeks after mold removal (should be the last...) he has been at baseline for over 1 1/2 weeks! Cannot believe it. He did do 2 weeks of abx during that time for a really bad inner ear infection. His chronic illness has never improved with abx before. Not sure what is happening, but will take it. Has at least one more month on Valcyte. Thought it might be because his school is out, but he says 'no', and he is still doing 3 subjects that he did not get done for his on-line program. See doctor next week so will be interesting to see how his ART testing results come out! Any ideas?

When my son was unable to attend school the last 2 years, we got him an xbox live account. Would never have done this before all of this started, but he needed some socialization (and he loves socializing). Started at about 12 1/2 and we had to go through some steep learning curves on language etc. that happens on there. He still has his friends from school and does not play video games much when they get together which is good to see. He has made some really good friends on xbox, one of which he actually was able to meet a few months ago that was visiting in our area. The farthest friend is in Scotland and the closest about 5 hours East of our house. It is amazing to hear kids that age talk about traditions (i.e., kilts) and politics along with all their other goofy stuff. It also helped a lot with his depression at being sick for so long. Just an idea...best wishes on continued healing!

My son's heart showed signs of stress at beginning of lyme treatment so has been on 'cratoxy' supplement for heart support for many months now. Also, I have mitral valve prolapse and I do not notice much except fast heartbeats periodically which I use biofeedback? to stop them right away (and I may be considered old by some. Keep healing!

We started out with the ERMI from www.mycometrics.com for around $300. It will give you a list of molds and their amounts measured in the rooms you test. It is a good starting point to see if you even have issues. Since we were not happy with ERMI test result, we remediated as much as possible on our own, then re-did ERMI, with not so good results (better but not a '2'), we hired a biohealthy contractor, who did actual air testing in the same rooms with the laundry room and attic added in. It was $250 + $100/per air test. We found the attic was extremely high and everything else fairly low. Not what type of mold but that it was high. Then did remediation based on that. Good that you are thinking about this, since it can have results as major as lyme etc. I believe the mold may have been the precursor to 'PANDAS' for my son. We bought and read the book 'Surviving Mold' and keep up-to-date on it with www.survivingmold.com. Skipped the chapters on lawsuits ectera because they were way beyond what I needed. Just wish the book had an index so I can easily refer back to information. Also, once you go to the above website, they have all the medical testing information on that site too, I believe. Our dr. only did some of the tests that Dr. S recommends, but they were eye-openers to say the least.

I hear you on the cost of MILA, but the dr. did not say what brand it was, and she gets patients from all over the world so it could be from anywhere. Will ask her at the next visit in a few weeks. One of the reasons the MILA tested well is because it does not have the fungus that other chia seeds have.

Chlorella Manna, 1500 vegan tabs for $55/bottle, online is even less. I would also use their vits. if dr. had not recommended Mila (Chia seed) by LifeMax. It is great! Have quit taking all my other vits. and feeling no pain/achiness like I used to. Dr. tested another brand of Chia Seed that I brought in but did not test well. She said only one other one, ever, had tested well. She figured it was the strain that LifeMax uses.

This is the panel ordered initially by our doctor from PACLAB: Cytomeg Abs (CMV) EBV G/M (Mono) MiscSend-PAML (HHV-6) We were shocked to find that my son had had Mono and also tested high on HHV-6! Had no idea since he tested neg. with other doctor. Now, several months of valtrex later, she tests thru LabCorp the one that continues to test HIGH: Human Herpes Virus Type 6 IgM (this one neg.) HHV 6 IgG Antibodies (this one positive so he has had for a while) After several months of Valtrex (plus Natureopathic/homeopathic supplements) he was not getting rid of HHV 6. So now on Valcyte prescription (very expensive) for 6-9 months. Interestingly enough, my dh also tested high on this virus so he has started Valtrex now. Since I am the only one well (or so it seems) the doctor thinks that I have antibodies for it so have no symptoms. Your smart to be checking for viruses.

When my ds's BUN level was high he was prescribed 'olive leaf' but only needed it for about 2 months.

Just wanted to add a few thoughts. My ds is being treated for parasites once again with Biltricide (prescription)3/day x2 days every 2 weeks for 2 months along with 'Graviola' and 'Cordychi'. She always seems to start some parasite treatment again when she sees my son biting his nails...not sure about the connection. Also, wondered if any virus test panels have been done. It seems to be a common occurence and may be the piece of the puzzle not yet dealt with. I may have already asked you this... My dh did chlorella/salmon oil for at least 6 months before seeing son's doctor and after doing a hair test from Doctors' Data (mostly paid by insurance) he showed no heavy metal issues. One less issue to deal with. Best wishes in healing for you and your family Susan.

Our fav has been energy testing well for months now. It is HealthForce Superfoods. They do their own testing now since nuclear waste in the air became more of an issue.

PM'd you.