JuliaFaith

A lot of this information was from Dr. Shoemakers book (Surviving Mold), some from the doctor, and some from researching on-line. DS was not prescribed cholestyramine. Apparently, dr. said a lot of patients had not had good reactions to it??? Just hope that this all does some good. Also in Shoemakers book there is a list of things to do for mold illness in order he lists them. Will try to post these tomorrow.

Had Dr. appt. yesterday to discuss these tests along with others. The C3a & C4a had not come back and I hear these are used for inflammatory markers. It says: HLA DR by PCR+MSH+VIP VIP, Plasma : This was unreadably low (I read this means that inflammation develops in periphery (not the brain) and could result in inflammation that attacks production of of regulatory harmones - PCR+MSH+VIP) MSH: LOW 11 (range per shoemaker 35-81 [labcorp says 0-40 but shoemaker does not agree])(also read that MaRCONS destroy this) Then there are several DRB, DQBs (genetic markers?) that appear to show results. After doctor had a phone consult with Dr. Shoemaker I was told that some indicated Borrelia, post-lyme and not sure what else. Did not really understand this. TSH was normal Triiodothyronine, Free, Serum: 5.8 HIGH (range 2.3-5.0) T4 was normal TGF-b1: 9860 very high (normal is 2000) After looking at all of this was told that my son has 'mold illness'. Treatment in addition to continuing BEG Spray (MARCONS) for 3 months, VIP spray also from Hopkinton Drug. We talking about EMF's which increase mold growth and make it toxic. Cordless phones are as bad as a huge jet. Get wire phones at Radio Shack. EMF Curtains for bedroom (keeps cell tower EMF out). An 'earthing pad' was recommended for better sleep (www.earthing.com). Have not looked into this yet. Very interesting concept. Use Matrix microbes spray - you mix with water and put in spray bottle. Spray rooms that ds uses. It captures mold, bacteria etc. Order and use 'propolis vaporizer' - Will use this upstairs (have air cleaner downstairs). It also gets rid of mold, bacteria etc. from the air. Also read that it can help with asthma sp? quite a lot. Detox: Epsom salt baths every day; & Chlorella vulgaris Antimicrobials: Venex ointment (sore muscles, inflammation on joints - this bee venom is amazing! $50 for small tube) used on ds sore knee and my swollen joint. Amazing results overnight; and VIP nasal spray from Hopkinton Drug Immune support: TriQuench applied topically to thyroid (still nebulizing every evening for lungs); & BRM 4 (do not know what this is) Anti-inflammatory: Niacinamide Kidney & adrenal support: Apis Homaccord; & Drenatropin PMG Cardiovascular support: Hawthorne Nutrient support: MILA (soak 1 scoop in water overnight); brazil nuts (selenium); Salmon oil; Vitamin D3 Continue using: cistus tea; quintessence; armous thyroid; lactoferrin; viressence; triquench; valtrex; supernatant; BEG spray; lithium; & CVE. Underlined ones are prescription. Sorry so long. Dr. also said that a year ago they would not have been able to figure all of this out because the information is so new. We feel lucky so now if ds can only get healthy aagain! Hope some of this helps someone.

This rings a bell with treatment my ds was doing. He was on 'CORE' BioPure mineral supplements for at least 3 months but has now been taken off of them. They had to be taken with a meal.

Great you found someone who does ART testing. I am currently looking for myself. It is tough to explain but will try. It works with a 3 ft. electromagnetic field around every person. It seems that the dr. touches a certain area on my ds and then pulls arms overhead and checks them. She also puts supplements/meds on a clear block of hard/clear plastic and checks each of those in the same manner. That is the best description I have for you.

Did you try 'folder' upper left of screen. click on 'conversations' click on 'edit' click on 'trash can' to the right of folder (empties entire folder of conversations) Also, Bottom right of screen click on arrow (left of 'Go') and put on 'delete') click on box to far right of each message you want to delete click on 'GO' button at far right bottom of screen Hope one of these works.

My ds13 had this test done and we are hoping to get results this Thursday. The test also included C3a, C4a, TGF Beta 1, & VIP. Most of these are discussed in Shoemaker book as well. Our dr. did say that these tests are helpful in 'cutting edge' medical discoveries. In Shoemakers (sorry) book it says "inflammation that developed in what we call the periphery-that means not in the brain-could result in inflammation that attacked production of regulatory harmones, VIP, MSH, and vasopressin. These are important in regulating inflammatory substances. When you don't have these 3 controlling elements acting synergistically, then the result wil be an inflammatory illness featuring a lack of regulatory control." Whew! Some of this book is intense reading. Good luck with your research.

We believe that our basement was flooded before we purchased the house. DH has removed a lot of mold downstairs. In one room, he had to remove some drywall for something else and found mold behind it. Removed the bottom 3-ft of drywall/insulation around the entire room. In another room with plastic flooring there was black mold between layers of it. He also removed all the carpeting and put in engineered bamboo flooring. This is why we are thinking the entire house may have been cross-contaminated because he may not have done the remediation properly.

We are looking at adding a filter to our heating system. Right now there is an electronic filter but we are not sure that is enough. My dh was at Costco and the 'heating specialist' there said we could add a hepa filter system on our heater for $560. Have heard that you have to be careful in terms of what the motor can handle when adding on something like this. Wondering whether it has an additional fan on it to assist the current motor with distribution. Thanks MT for all your info.

We are looking at adding a filter to our heating system. Right now there is an electronic filter but we are not sure that is enough. My dh was at Costco and the 'heating specialist' there said we could add a hepa filter system on our heater for $560. Have heard that you have to be careful in terms of what the motor can handle when adding on something like this. Wondering whether it has an additional fan on it to assist the current motor with distribution. Thanks MT for all your info.

DS is using the cistus tea (4 cups/day) and the iodine in a nebulizer every evening for his lungs (mico). His lungs are showing improvement after 6 months but not sure about the tea. He does not really like the dryness the tea leaves in the mouth so a bit difficult to get him to drink 4 cups a day. Michael: Thank you for the EMF info.

My ds was on Alinia for about 3 months but he was also on other supplements (no abx) and had no herxing that I can recall. Our insurance would only pay for 6 pills so had to order it from a Canadian pharmacy because it was so expensive in the U.S. Dr. said he will probably be on it again in the future.

This is actually called "BEG Spray" and it is made by Hopkinson Drug in MA (508.435.4441 is their phone #).

My ds just had tonsils & adnoids out and while asleep(can do while awake too) ENT did deep nasal swab and test came back positive for MARCONS (abx resistant staph). Treatment for this has been a nasal spray (BEG Spray) 4x day hopefully for just 6 weeks treatment. Had to order from a special pharmacy in MA. Hope you can figure all of this out soon!

We did the ERMI testing because my son kept testing high for mold with muscle testing. We thought all the mold had been removed from our house in prior years and did not think there was a mold problem in our home. These are the main reasons we did the test. It came back rather high which really surprised us. After talking to the lab that does the testing, the chemist recommended that we clean our house top to bottom (vacuum, wash, vacuum), heating system cleaned, and retest in 2-3 months. We are in the process of cleaning and decided to replace carpeting and some other things in case we have to move. We just found mold under trim along our countertops in the kitchen and under tile behind the faucet. What a surprise! Not sure what we will find next... For the ERMI testing, I called and talked to someone at the office and they recommended I use the 'dust-cloth' method because 1 of 2 rooms was wood floor. You only test the main living room and bedroom because the national averages were only based on those 2 rooms. I just dusted above door ways in both rooms. If you have just carpet, then they recommend the vacuum method. Either way, they send you the stuff you need to do either and you do the test and send it back yourself. At first, I thought someone had to do the test and found a company that wanted to charge me $600 to do the test so glad I found out it could be done by the homeowner for $290.

Interesting information regarding the fungi/mold. In Dr. Shoemakers book (Surviving Mold) he points to super-fungi but thinks they are created from herbicides/pesticides. Between the two doctors, it would seem that 'super-fungi/mold' is the agreed result. Have been wondering about EMF's and their contribution to all of the lyme/mold etc. treatment. Thank you for describing that in more detail here. On that same note, will be looking at your thread (hopefully can find it) about purchasing EMF products and which ones worked better for you. My older son had a friend that died of MS at age 21 a few years ago, so interesting correlation with MS as well. She was in poor shape and 2 drs. prescribed meds. that together killed her. Her mother and sister still have MS so will pass the info. along. Thank you again for your posting. Hopefully, you made it back ok from your trip without getting ill. Just picked up garlic tabs for my dh for traveling after he came back from a trip with a virus.

Good to hear you are still working on getting better! My ds13 has an awful tasting 'cocktail' of stuff he has to take and the only way he can take it is to mix the tinctures and GSE with about a tablespoon of honey and follow with a big glass of water. Supposed to take with liquid but he says it would automatically be spit out because it tastes so bad. Good luck with that stuff and your healing!

DS dr. has him taking it right before meals which is when he takes abx. She does not usually address timing for any supplements except for this 'cocktail'. I usually research that when we get home from visit with new protocol.

DS13 used it for about a month and had to stop for T&A but he had flair-ups quite a bit (5 day flare...2 days ok...4 day flare...1 day ok...3 day flare...2 day ok...). Now we just started him on it again (along with Quintessence/viressence) and he is flaring again on day 2 of taking it. Did find an interesting article on this but it is quite lenghthy and has doctors names in it so will PM to anyone who wants to take a look just let me know. It sounds like there are many good properties in the GSE (anti-bacterial, anti-viral...).

Interesting that GSE is the discussion here. My DS just started it again 2 days ago and is flaring up again (also combined with Quintessence & Viressence). He has been off of it for a while now but was flaring up last time he was on it as well. 5 days flare..2 days ok...4 days flare...2 days ok...3days flare...2 days ok...1 day flare up. When I say 'ok' just back to his baseline which is not that great either. You are in my prayers for Evan!

We also found sound both with 2 feet of the compost can that was along the edge of the countertops. Also, a bit on the floor as well. This is all within 10 feet of our air-intake. We are cleaning and replacing carpets, counters, & floors right now so will keep the vege waste in the sealed compost box outside from now on. This is such a long, expensive process! Found yellow spots on the drywall under the stairs but not sure what it is. They are barely visible but will replace just in case. After all this will re-test and determine if we can stay in house. DS blood work results should be available in a couple of weeks as well. His energy was sky-high until today. Still doing MACRON spray and added Quintessense-Viressence-Grapefruit-Seed Extract cocktail to his protocol again 2 days ago. This always gets him flaring (do not have artemisin in it this time around). Cannot remember what these are for? Thank you MichaelTampa & Familyof5 for your input!

DS keeps having mold showing up in ART testing. We did the ERMI testing and it was high for mold. Have been cleaning house top to bottom to get rid of any cross-contamination that may have occurred when mold was removed from our house in prior years. It just occurred to me yesterday that we have a container that we put fruit/vege scraps in for the compost pile. It gets pretty moldy if it does not get emptied on a regular basis. We open/close it all day adding new waste. Wondering if this could be our main mold problem? Cannot believe we missed something so obvious!

http://www.lymeinducedautism.com/images/Belle_s_Palsey_of_the_Gut.pdf Going to print this article and send it to the pediatric stomach doctor that said my ds was "perfectly fine" after an edoscopy and prescribed anti-anxiety medication. Thank you. Did you get a copy of the path report?? No...still can I suppose. Why do you ask?

Going to print this article and send it to the pediatric stomach doctor that said my ds was "perfectly fine" after an edoscopy and prescribed anti-anxiety medication. Thank you.

T&A was definitely not something that I was going to do for my ds13 before. He had never had strep or anything else that I knew of. His throat was sore for the last year but that was it. Our very first visit with a Natureopathic doctor, she told me that all PANDAS kids should have tonsils removed! Shocking coming from an ND. It took me another 5 months and getting past the 1 year of not well mark, to decide to go ahead with it. DS just had his t&A 3 weeks ago. The surgeon said the tonsils were enlarged and looked like they had been thru several infections. Apparently, his adnoids were enflamed as well. While son was under my ND had them do a deep nasal culture and that came back positive for MARCONS (super staph bug) which he is currently being treated. Since he has not been well for over a year, it was a tough recouperation just from the mental standpoint. It took about 2 1/2 weeks before he was eating the usual and not complaining about the pain. In the long run I think it is good that we did it. Read somewhere on-line that when we hit adult-hood they are less useful cannot remember the reasons. Hope this helps.