JuliaFaith

My son is using Chlorella (20 tabs with 3 salmon oil) before each meal instead of the cholestyramine. It may be because his stomach is still not back to normal and he is seeing an ND. Found an inexpensive/good chlorella if you are interested. Checked out good with dr. testing and about 1/3 the cost of others he has taken.

So good to hear your son is so active (sounds like my 13 yr. old too), and good to see for the parent! Getting rid of the mold helps these kids heal faster/better so that may have your son on the road to healing... Keep us posted.

"What ERMI does is to provide a clear indicator of what organisms are present, something that air sample never can do thoroughly, and that make-up of the fungi tells us what levels of water saturation are going to be found. That information in turn tells us where to look to (1) fix the moisture; (2) tear out the wet building materials and clean reservoirs in air, possession and floor/wall/ceiling. Cleaning the reservoirs of microbial products is maddeningly demanding of attention to detail."

Thank you for sharing this article!

When he was in the thick of this, I would give him a daily dose of allergy medicine to help prevent it, as rubbing your eyes/skin couldn't be avoided. It helped, but he did still have reactions although not as severe. Like I said, he doesn't have them anymore---thank God. Keep cleaning Julia! So happy to hear of your son's improvement. Son's MD gave told him to take Zantac 2xday. Said it was related to excess histamine release.? Weird huh?

Hi Familyof5: Wow! This is really interesting. He said that he thought something was in his eye and started rubbing it and the other eye immediately started breaking out in hives. If he does not take Benadryl immediately he breaks out over his entire body. This son is not being treated for anything right now but works in many different places and cannot seems to tie the hives to anything specifically. He also said he has no other allergy symptoms normally! Thank you for the info.

'Detoxing' of which there are several threads that you may want to search on this forum. Chlorella is a great detoxer as is lots of water with lemon.

Was just in the vitamin store and mentioned your hives to one of the salespeople and she said it could be your liver is not able to handle all the toxins in it. She had a similar problem at one point and my older son has been having the same problem.

Had another appt. with dr. for ds13 (PANDAs/lyme/mold/pneumonia/thyroid). With ART muscle testing, he is improving and is typical for dr. to see it before patient may feel it. Son says he still has the flu-like symptoms but swam 1/2 mile the other day, played tennis, and went on bike rides so thinking something is feeling better! Had a discussion about EMF's and was told that the 'earthing pad' is the least we should do. Said that only 1 out of 50 patients did not get any results. So will try it, apparently ~$200. Also, to turn off electricity in son's bedroom, but we might not be able to do that without shutting off several other things. Discussed neurofeedback as a recovery option as well. She said that son is ready for occupational and/or physical therapy to support a full recovery and referred us to the local naturaopathic college. She recommended a local children's hospital but we have not had good experiences there. She said to ask for 'Team Care' and give them an overview of what son has been through. Apparently, they figure out what treatment(s) would benefit him in terms of recovery. Also said that insurance would probably cover it. My insurance has not covered much of this so will be surprised if they do... Neurofeedback could possibly be one of their recommendations. After 9 mos. of treatment with this dr. she is also doing part of the parasite protocol again. Ivermectin/pyrantel pamoate for 2 weeks - then Alinia for next 28 days. She said that the Alinia is good for many things so treats a lot at once. Stomach is still showing that it needs work which did not surprise the doctor at all. She prescribed VSL thinking that insurance would cover - not. Discontinued a few things - yea! For now continuing the following: Viressence/Quintessence, Apis homaccord, salmon oil-chlorella (taken together for detox), VIP nasal spray, MILA (chia seed), drenatropin, cratoxy, triquench-nebulizer for lungs (having us add 10 drops Allimax which is a garlic; also, said this would be helpful in keeping healthy when returning to school), valtrex, & rock rose tea (breaks down biofilm). A couple of these are for organ support (maybe cratoxy & apis homaccord). From what I have read, the adrenal gland has to be fixed before thyroid can be healed so wonder if the drenatropin is for that. Also said that in terms of T&A, some patients feel worse 1st 3 months afterwards then improve in leaps and bounds up to 9 mos. after. My son has not felt worse at all after procedure was done and he healed, on 3 months just now. Apparently, everything we are doing, in terms of mold, is working to help him heal faster. Still plugging away at cleaning home etc.

We did K12.com which is a public and private school. Only some states offer the public school option. It worked well because of the flexibility in doing work on the weekends and any time my son felt good enough. He is still working on his school all this summer to get caught up with his grade. At the 7th grade level, 25% of his assignments are on the computer and the rest are out of books etc. If public school, they provide the books and some supplies (i.e., science, art) by sending them to you in the mail. As they increase in grade, the percentage of work on-line increases. He was required to put in 25 hours/week and we worked towards that but sometimes were a bit short. He did have a 504 plan set up with the school,as well, which helped them be able to be more flexible with us as well. At one point his dr. recommended taking a month off and so we provided the school with a note from her and they said 'ok'. I did have my son continue to do a bit of the school work though - thank goodness. Since he is starting to feel better, we are hoping he can return to a public school this Fall but not sure yet.

So I guess what he is trying to say is - that depending on what type of mold is found and level of saturation, it will give you clues to where to look? Example, this type of mold is more likely in bathroom -- another type more likely in drywall? But the test results don't give you that info - you have to research the different types of molds?? Or you can talk to the chemist who does the test. He was difficult for me to understand because of his accent but very knowledgably about the different types of mold. Yes, I did find that some of the molds are more likely in certain places. I only researched the ones that had high number counts. For example, the Aureobasidium pullulans is mostly found in calk and bathrooms and is pink or black and can cause respiratory irritation. There were only 9 of the 36 that seemed high that I researched online. Also, important to note that Dr. S has had to serve as a knowledgable witness in many court cases, so some of what he writes is for people dealing with lawsuits/disability insurance etc.

My ds was not on abx and went on artemisa (along with viressence and Quintessence) and he did flare-up but each time it was shorter and stopped completely when we switched treatment, to not include the artemisa (but still doing the others right now). Just know that with the treatment your son will slowly start improving. My son's doctor, after 9 mos. of treatment, said that he is now showing signs of improvement/healing and that means his body will be working better and helping with the healing.

Having done the ERMI test myself, it is only to let you know if/what mold is present in your home and the amounts so you can tell if there is even a problem. The results on their scale of good-bad (-1 to 20) is based on a study of homes across the U.S. It is called the "relative moldiness index values". They ask that you take a sample from the bedroom and other room (i.e., family room) that you spend the most time in which is what their study is based on (ok, I cheated and did my central heating filter too!). My results had ~36 fungal species with the amount detected on each one (some were ND). This was a shock because we thought all the mold had been removed from our house. After speaking with the chemist, he indicated a couple that were really high and could affect health (Aspergillus Restrictus and the Penicillium chrysogrenum). I researched these a bit and found that the Aspergillus strain is the most toxic and can cause liver, cancer, and damage to vital organs. The Penicillium strain could cause kidney failure and cancer. This was also a shock! The chemist recommended that we first vacuum, wash, vacuum, each room in the house in case there was cross-contamination when we removed mold over the last 11 yrs. We are almost done but it was a huge job! I either cleaned everything before putting it back in the room or got rid of it. We decided to remove carpeting/remodel some rooms in our upstairs, in case we had to sell, since it really needed it. We found a bit of mold in the kitchen and bath that we had no idea was there. After we are done with all of this, he recommended that we redo the ERMI test in 2-3 months. If it is still high, we will either have to hire a company that can search for the mold and remediate or look for another home because mold affects all of us and more for the immune compromised. It seems Familyof5 did the ERMI test in each room to pinpoint the room that had the mold problem. Her family is highly sensitive to mold. You may want to read some of her threads on that. My doctor said that everyone will have DNA stuff that comes back but that does not necessarily mean you will have a problem. For my son, we are only following some of the protocol. I agree that this is very overwhelming and difficult but how else can we 'heal' our children if we do not look at everything. My ds13 is finally showing some improvement even though he still has mild flu-like symptoms so we are hopeful that he is on his way to healing.

From what I understand it's a deep nasal culture that ties in somehow to the presence of Marcons. Apparently it is required before Hopkington will sell VIP (Per Dr. Shoemaker) Son's ND requested the ENT to do the swab while son was getting T&A but it can be done while awake just really uncomfortable. Then ND prescribed BEG spray to treat. Confusing huh?!

Hopkinton Drugs is probably the only place to get VIP since the pharmacist there has a company make one of the ingredients. I only know this because insurance is not wanting to pay for it since it does not have a NDC # so I spoke with the pharmacist about it. Not sure what an api-staph test is?

Dr. S has a DVD for sale now that trains doctors (and patients) on his protocol. It is on his website for $250, $50 goes to a fund for people who cannot afford treatment. Also, I read "Surviving Mold" and it was an effort to survive reading the huge book. I did skip some of the legal chapters just to get thru it. May have to read it again. I ordered an Index for it but have not received it from Dr. S office. It is really difficult to go back and find info. without the index, even with all my sticky notes. The information in this book is cutting edge medical research. My ds dr. said that they would not have had this info. a year ago.

Since your dr. is willing to treat, he may want to get Dr. S new DVDs for training doctors in his protocol (and for patients) which can be ordered on his website. I bought his book "Surviving Mold" and so I get newsletters monthly. The book cost less on his website than other places. You might want to call the pharmacist at Hopkinton. He told me that the spray should not get over 70 degrees (I believe) so it does not have to be refrigerated under the right circumstances. My son also said it burns but he has been doing it for almost 3 mos. now. He stops taking it this week. My son (over 120 lbs.) does it 4 times a day in both nostrils. Ds started using VIP spray 1 month after starting the BEG spray when we found out that thru ERMI test that mold was in the home. He takes the VIP spray 4 times a day but on alternate nostrils (only 1 side at a time). He is on this for 3 months as well. On my own notes on LabCorp results I wrote "MARCoNS destroy MSH". This was probably after doing some research somewhere so not sure how accurate. Another family I know, their son had staph in his sinuses and his ENT blasted the infection out of his sinuses and then used abx spray. Not sure if the biofilm is still there after this procedure. He was probably put to sleep. You may want to be looking for possible mold in your home as well. If there is mold, it will be difficult for your child to heal. I believe Dr. S only prescribes the VIP patient if removed from mold exposure. We are at the end of cleaning our home (and everything in it) in case of cross-contamination when mold was removed from our house. We are also remodeling the kitchen/bath in case there is mold. We found mold in both places that we had no idea wwas there. We are burned out but my son is getting better!

I hear you on the transplant thing! BEG spray is a prescription with Hopkinton Drugs. My son had to spray it in both nostrils 4 times a day for 3 months (he is almost done). He does say that it burns every time he uses it. Did hear that another mom only used it for 1 1/2 months so should talk to dr. about this. My son is over 120 lbs.

So glad you found the mold on one hand but not the work/$$$ to fix it! Have not researched that particular mold but some of the molds can even cause cancer! It almost seems to me that we need to remodel broom/kitchens every 5-10 yrs. just to make sure no mold is growing! We did just hear from an insurance adjuster (our tub leaked [of course, not in the rooms we were remodeling at the time] and we are hoping insurance will pay for some of the damage) said that mold can grow within 24 hours after a leak starts! You may want to do an ERMI test when you are sure that all mold is removed just to make sure.

Found in Dr. S's book today that BEG spray is made from EDTA (?) (dissolves biofilm) and antibiotics. Another family we know has a son with the same thing and his ENT prescribed some type of Abx nasal spray after forcing the infection out of his sinues somehow while he was asleep - maybe blasting it out somehow." My ds is being treated for many things at once, but his fatigue is almost completely gone now after using the BEG spray.

This is on his website: Physician's Approach to Biotoxin Illness - **NEW** For the first time, Dr. S’s lectures are available for physicians to be trained in his protocols, as well as collation of research data. Learning how to use an organized approach to diagnose and treat biotoxin illnesses opens an entire new world on the dead ends of guesses, assumptions and use of questionable lab results that are still ongoing. $250.00 http://www.survivingmold.com/products1/physicians-approach-to-biotoxin-illness-product-details

Hi Philamom -- Just read in Dr. S's book that C3a "tells us indirectly about bacterial membranes present in blood." For the C4A Dr. S says that "any test result over 2800 is of concern" but my son's dr. said my son's was probably much higher at one time but with treatment has gone done. The transplant comment is because these tests are used for that purpose as well. It does not mean your child needs a transplant. MSH -- The range I wrote on my lab results is (35-81) not 0-40. I believe this is one Dr. S changed because the Lab changed it for some obscure reason. In Dr. S book he says that "there is a reduction in blood flow in the small blood vessels, called capillaries, all because of some increase in TGF beta-1... or C4A or in any combination, we'll see the capillary beds responding with a message that says..."hey, we're not getting enough oxygen, we have hypoxia, so something. Now!" This is taken out of context so take it as it is. MARCons Spray -- Made out of EDTA (dissolves biofilm) and Antibiotics. My son is also drinking 3-4 glasses of rock rose tea a day to destroy biofilm. His ND wanted the ENT to do the deep nasal culture while my son was getting T&A. The ENT agreed but did not prescribe the BEG spray and monitor treatment, my son's ND did that.

You may want to search MARCons on this forum to come up with some discussions on this. Great you found it as your daughter will find some great relief if treated! We used BEG spray from Hopkinton Drug. DS13 is on 3rd month which will be the last. His energy has skyrocketed!

Very informative and interesting to watch.