JuliaFaith

All I can tell you is that Dr. S's new book was published in 2010 and my ds dr. said that the info. that we got from him would not have been known a year ago. Treatment/diagnosis would have been much longer/harder. She also said that having the T&A would help speed up recovery as well. Also, the ENT with instructions "test for MARCoNS, coagulase negative staph, and mold growth" from my ds dr. seemed to make sense to her and the ENT ordered the tests. The tests were done at 2 different hospitals with results on ENT's letterhead. We were referred to the ENT by son's dr. This cutting-edge medical stuff is difficult to understand. Hope this helps.

Julia- I'm away with limited internet service. I do not have the results in front of me--only received some information via hubby. He said the C3/C4 was normal but not sure if it was done by the Jewish Lab until I see a copy. The C3A is 115.2 and C4A is 180.4. I do not have a doctor familar with any of this. I just asked asked a physician to sign off on the lab sheet. Lab Corp said the results go to Shoemaker's office. I asked for a copy as well at the time of the blood draw. I was really hoping all this would be negative! When I get home I plan to run the ERMI test and the KPU urine test. Two other results are creative protein at .3 and ACTH at 20.5 (both normal I think). I also got the results of the HLA but my hubby couldn't understand it...but we already know she is HLA DR4 positive from Dr. J. thx The C3a Range 0-940 (lower the better) lyme indicator (my ds was 157 and his HLA indicated post-lyme) C4a Range 0-2,830 (lower the better) mold indicator (my ds was 2,632 and we are treating mold illness with Chlorella/VIP nasal spray) The HLA is difficult to read...son's dr. did say that everyone has something come back on these but that does not necessarily mean you will have any problems.

These are just my notes on the LabCorp sheet: -TGF-b1 affects the lungs and a gluten-free diet is recommended until numbers are lowered. (My son's was 9860 and he is being treated for 2 pneumonias in his lungs) -MSH----MaRCONS can destroy this. Dr. S says if this is below 35 and C4a is less than 20,000 you need a ERMI '2' or lower score on mold test -VIP----Inflammation develops in periphery (not brain) could result in inflammation that is attached to production of regulatory harmones - MSH, VIP Hope you have a good doctor to discuss these results. My dr. actually had a phone consult with Dr. Shoemaker about some of the test results (may have been the DNA part). DS is on 3rd month of MaRCONS spray (BEG spray-with positive deep nasal culture) and on 2nd month of VIP spray along with many other remediations for mold removal/remodel in our home. We found a bit of mold but not much and we are almost done. There were some questionable yellow dots on the back of a painting that had spent 3 yrs. in S. AFrica. Best wishes on treatment!

Thank you Michael for your insight on EMFs. It is a hard concept to grasp since we cannot see it. Had to look up the stetzer filters so not sure where I found them but if you google them there are several articles/companies that carry them. It seems as though you needed a minimum of 4 in a home to really be effective and the price for 4 was around $300-400. Here is a quote from one of the overviews (www.stetzerelectric.com/filter/): "The STETZERiZER filter is designed to filter harmonics and other high frequency current (trash) from the electrical environment, thereby reducing the potential for leakage into the human environment and creating additional trash in non-liner loads (televisions, computers, variable frequency drives, energy-efficient lighting, etc.). Filters are designed to be installed throughout the home in a pattern that corresponds to the distributed nature of the need. For example, installing two filters close to a desktop computer or a television is normally appropriate and effective. Installing filters, normally from two to six, close to the input power panel is recommended to address high frequency currents entering on the power lines. The total number of filters required depends on the size of the home, the amount of electrical equipment, and the quality of the power from the grid. Twenty filters are normally adequate for a "typical" house. Installing an inadequate number of filters tends to result in overloaded filters, leading to an ineffective solution. The preferred installation method is to be guided by the STETZERiZER Microsurge Meter, which measures the amount of high frequency energy present. Readings of 30 or lower indicate an acceptable environment, while readings of 50 or higher indicate a need for additional filters. Readings between 30 and 50 are marginally acceptable, but should be reduced if anyone in the area is electrically sensitive. The reader is encouraged to review the STETZERiZER Microsurge Meter Product Description, the STETZERiZER Filter Installation Instructions, and the STETZERiZER Filter Frequently Asked Questions. "

In terms of EMFs we have been advised to replace our cordless phone first. It apparently has just as much EMFs as a jet airplane! So we did get a cord phone that does not plug into electricity at all and did get my ds a hat to wear while he is playing Xbox live. We were recommended to paint my son's bedroom or the whole house with EMF paint. It was also recommended that we get EMF curtain and plug in air cleaner into a plug outside my son's bedroom. Also, stetzer filters, which you can get for each room of the house. Have not done anything else yet as we are paying for a lot of medical/mold removal expenses right now. We also have jets flying overhead, quite a distance, every day quite frequently, which makes me wonder how good that can be for our health. Ds energy is skyrocketing, but not sure what it is from since he is being treated for so many things at once.

We started with petri dishes from a home improvement store. We did several rooms and sent in only one that showed much on it. We thought there was not much problem but when ds kept testing for mold (ART) we did an ERMI test. That was a shocker! We thought there was no mold and the test kept back pretty high for mold. It also listed the types of mold and amounts. After speaking to the company we found a couple of them were pretty high and unhealthy. We thought all mold had been removed from our house. Now in the middle of cleaning the house top to bottom and replacing kitchen counters/sinks/floors and bathroom tub/sink/floors we have found a bit more that we were unaware of. It almost seems that you need to remodel both kitchen/baths every 10-15 years just to make sure there is none there because it cannot always be seen.

For Myco (and another one that I cannot remember) my son's ND has him taking tri-quench by Scientific Botanicals, Inc. in the nebulizer at night for a year (3-4 drops). His lungs are slowly improving. She now has him applying Tri-Quench once a day externally on a cotton swab for thyroid problem as well.

My ds13 has been mostly on herbals and on abx only 3 of the last 8 months. We just got DNA testing results back that he is post-lyme which I take it to mean that it is in the background now. With the herbals, flare-ups were not as extreme as others that I have read about on this forum at all. But my son has been a bit different compared to others on the forums, all along, and his main problem now is mold illness and related other things, as well as, mico. His lungs are showing improvement after 8 mos. of inhaling iodine (thru a nebulizer) once a day and he may still have 4 months to go. The herbals, I truly believe, have kept him from getting much worse. The expense has been quite large though because insurance does not pay for any of his herbal supplements only for most of his prescriptions.

If your insurance covers psych, OT or any other professional who uses Neurofeedback as a treatment modality, insurance should cover it, if coded correctly. Technically, insurance cannot dictate what means to an end is used for professionals to treat a clients' condition. So, if you are treating OCD, attentional issues, anxiety, etc., the treating professional has the responsibility to determine what treatment approach and modality to use. Good luck. Diagnostic #90901 is what the dr. gave us. Not sure if this could work?

Thank you TPotter and Lynn. Just found out that insurance does not cover it so it may be something we do towards the very end of treatment (if we have any money left!). It is supposed to help with any lingering issues from all of the illness that son has gone thru. His issues are not readily apparent so will wait on this.

Since ds13 is starting to show some improvements, his MD recommended this and she has someone in her office who does it. She is a very good integrative MD so considering this down the road as improvement continues. Anyone done this before or have information on Nuerofeedback? Thanks!

If it's biotoxin, then a binder should help. Chlorella seems to be preferred in the lyme community - not sure why charcoal is never mentioned. My understanding is they do roughly the same thing (anyone know why charcoal isn't suggested by the doctors?). I don't think binders help with true allergies. Allergies cause histamines to spike. So I'm not sure. Chlorella is nutritional as well as a binder so you get both for the price of one. Oops - beat me to it Michael.

Nebulizer/vaporizer was thru Bee Healthy Farms at www.beehealthyfarms.com We are using the BioPure salmon oil but tried another top-of-the-line brand that did not test well. Dr. recommended and I just ordered some from another company located in Bellingham, WA, called Vital Choice. They were 1/2 the price not including $5/shipping per bottle (not sure if the dosage is the same). You may be able to punture the capsule and add it to your son's food. My son is 13 so not sure what your son's dosage would be.

My son is taking salmon oil and chlorella (in place of the chloresta...)for detoxing and inflammation for mold. It seems like some detoxing would be helpful. He is taking 9 salmon gels/day and 60 chlorella a day just to give you an idea about detoxing. An air cleaner (local warehouse store), if you can get one, would be good too. We are also using this propolis nebulizer which removes 70-80% of molds, bacteria, & viruses out of the air. It is about $200 and uses propolis which bees use in their hives to keep them healthy. One is in his bedroom and another is in the other room he spends a lot of time in. These things along with treating his MaRCONS with BEG spray, and using the VIP spray (both recommended by Dr. S,) are actually helping improve his health situation for the first time in over a year! Hope this helps! Julia

My ds13 is being treated for hypothyroidism in the midst of his PANDAS/lyme/mold illnesses. Apparently, thyroid problems are not uncommon. Great you found this new avenue to explore!

So sorry for your situation with 3 children! Ds13 just had some of Dr. S tests done and these looks like them. You can go to his website and look them up on 'Rosetta Stone Table' but they are difficult to read-son's dr. had to do a phone consult with Dr. S to figure them out. Here is what it looks like based on my result readings (so could be way off): DRB1*4: multisusceptible (?)/dinoflagellates (do not know what this means...) DRB1*01: Low MSH (this can indicate mold and/or mico - and not sure what else) Best wishes for your children. It looks like you are on the right track which is great! Just getting to the bottom of the problem(s) is 1/2 the battle and recoup time the other 1/2. See if you can possibly get some alone-time to sort it all out (easier said than done!). Take care and keep posting.

I bought a $10 mold test kit from the hardware store. The video is helping me make sense of it all. We used the mold test kits as well and did about 4-5 of them thruout the house. We sent in the only one that showed 3 spores to have it tested. Now, looking back after ERMI testing, it was right on we just did not believe there was much to be concerned about...not!

julia -- glad to hear you're on a good track! how did you discover mold to be the biggest problem? are you saying you have been treating mold for 8 mths and that is still the most troublesome now or were you treating other things and mold seems to now be rearing? yes, i'm curious about how many pathogens actually are in our body but may not be troublesome until an overload or some event that triggers it to become unbalanced. thanks. My son goes to an ND (for 8 mos.) and she uses ART muscle testing as a huge diagnostic tool along with blood test etc. From our first visit she said that mold was 'showing up as a problem'. This was 8 months ago. We also discussed several other things so did not think it was the main problem. My son sees her monthly and so soon after the first visit, his body kept showing high levels of mold. So she recommended we start with the petri dishes from a home improvement store to see if there was mold in our house. We had removed some in at least 3 rooms in our basement overy 10 yrs. We did not think there was any left. The petri dishes were relatively minimal in terms of mold so we did not worry about it. Son kept testing for increased mold and Dr. suggested we do an ERMI test. I think the MaRCONS found in his nasal passage (while T&A was done) were a heads-up that the mold was an issue as well. Our ERMI test result was pretty high to our surprise so we started cleaning the house top-to-bottom in case it had been cross-contaminated when prior mold was removed. We also decided to get rid of old carpeting and do some remodeling in case we had to get son out of the house. We found a bit of mold in the kitchen and bathroom upstairs that we did not know about. Also, we found yellow dots on the back of a piece of art that had spent 3 yrs. in Africa, and today, on the inside of the toilet lid that holds the tank... Dr. told us to read Dr. Shoemaker's book and did some of his recommended tests which came back pointing to post-lyme and mold. Mold was the higher of the numbers. This has been a huge endeavor and we are maybe 60% done. In the meantime, my son is being treated for MaRCONS & Mold, along with other continuing treatment for lyme, thyroid, pneumonias, nutrition etc. We have an air cleaner in his bedroom and a propolis nebulizer in the family room to keep the air virus, mold, bacteria almost free. Also, we this spray whenever we come out of the bathroom we are remodeling to keep stuff out of the air that may be in there. Treatment for mold (nasal spray, air cleaners etc.) has only been going on for a few months now. Dr. said son only has to take the nasal sprays for 3 mos. (BEG & VIP Spray). I think you are right about the body tipping over in one direction when overloaded and talked to Dr. about that. We both agreed that once his body tips to the healthier side, it will do more to help heal itself. We are right at the cusp of that right now...and hoping it will continue in good health direction! We are exhausted with all of this but really excited about the healing that is happening! Hope you are finding some paths to follow as well.

julia -- glad to hear you're on a good track! how did you discover mold to be the biggest problem? are you saying you have been treating mold for 8 mths and that is still the most troublesome now or were you treating other things and mold seems to now be rearing? yes, i'm curious about how many pathogens actually are in our body but may not be troublesome until an overload or some event that triggers it to become unbalanced. thanks. My son goes to an ND (for 8 mos.) and she uses ART muscle testing as a huge diagnostic tool along with blood test etc. From our first visit she said that mold was 'showing up as a problem'. This was 8 months ago. We also discussed several other things so did not think it was the main problem. My son sees her monthly and so soon after the first visit, his body kept showing high levels of mold. So she recommended we start with the petri dishes from a home improvement store to see if there was mold in our house. We had removed some in at least 3 rooms in our basement overy 10 yrs. We did not think there was any left. The petri dishes were relatively minimal in terms of mold so we did not worry about it. Son kept testing for increased mold and Dr. suggested we do an ERMI test. I think the MaRCONS found in his nasal passage were a heads up that the mold was an issue as well. Our ERMI test result was pretty high to our surprise so we started cleaning the house top-to-bottom in case it had been cross-contaminated when prior mold was removed. We also decided to get rid of old carpeting and do some remodeling in case we had to get son out of the house. We found a bit of mold in the kitchen and bathroom upstairs that we did not know about. Also, we found yellow dots on the back of a piece of art that had spent 3 yrs. in Africa... Dr. told us to read Dr. Shoemaker's book and did some of his recommended tests which came back pointing to post-lyme and mold. Mold was the high of the numbers. This has been a huge endeavor and we are maybe 60% done. In the meantime, my son is being treated for MaRCONS & Mold, along with other continuing treatment for lyme, thyroid, pneumonias, nutrition etc. We have an air cleaner in his bedroom and a propolis nebulizer in the family room to keep the air virus, mold, bacteria almost free. Also, we this spray whenever we come out of the bathroom we are remodeling to keep stuff out of the air that may be in there. Treatment for mold (nasal spray, air cleaners etc.) has only been going on for a few months now. Dr. said son only has to take the nasal sprays for 3 mos. (BEG & VIP Spray).

Just a quick note of experiences on PANDAS site and where we are now. DS13 was diagnosed with PANDAS more than a year ago. Dr. tried everything and nothing seemed to work. Our last resort was IVIG which I was not sure about doing. Saw others exploring the lyme idea and decided it was worth at least one visit to a Lyme doctor. Since then, 8 mos. ago we have been 'unpeeling the onion'. First ND said he had lyme disease, and a few pnuemonias in lungs, thyroid problem, and she was treating it. She also said he was testing high for mold. The test for mold continued to show up. She recommended T&A and after my son being ill for 1 yr. decided to do it. Dr. recommended it on first visit and said 'all PANDAS people should do this'. Found MaRCONS in nasal swab. Treating those still. Just found out that MOLD is the big thing affecting my son. He does show some lyme as well but mold is showing the biggest problem right now. What a surprise!!! Read Dr. Shoemaker's book and are now son treating for mold, removing mold out of house (if we can find it) and will do more testing on house as this evolves. Wish we had known to explore this earlier but glad we are finding it now and treating. It sounds like the lyme is in the system but if healthy, can keep it dormant. Interesting to find out how many people actually carry the lyme. Hope this information helps someone move forward in treatment and sees some healing. My son just got his first 'holding steady and slow improvement' diagnosis last week and we are very hopeful. Best wishes.

Just another viewpoint. Dr. of my ds13 said that "All PANDAS diagnosed people should get tonsils out." It took us 6 mos. to finally decide to do it. My son did not seem to have any throat problems, except a perpetual sore throat. They did a deep nasal swab while he was asleep (not a pleasant experience while awake) for MaRCONS which surprisingly came back positive! Now that they are out & adnoids, he is testing steady and improving slowly and Dr. predicts quicker than ones who do not have the T & A (if necessary) out. Decided to do it because we had hit the over-a-year of being ill marker. It was a tough recoup but was over (pretty much) in 10 days. His Dr. did say that a flare-up could happen after they were removed but did not notice it. Just difficult over the pain he was experiencing b/4 they were taken out. Following you along and happy to see that you are finding some things out and can treat them! BEst wishes!

FYI - Just found mold in the toilet tank on the underside of the lid!

Our insurance would only pay for 7 pills of Alinia so a Dr. recommended going thru a Vancouver, Canada, pharmacy. We did and got 3 months of it for ~$95. You could call their office and ask someone in the office to tell you the name and number of that pharmacy. It took a while to get it sent from the UK though - maybe 2 wks.

We have no expertise in this, but have read Dr. Shoemaker's book and hope to get Dr. Schaller's book (wonder if anyone has read this), and would say to hang plastic with masking tape, maybe twice with 2 entries, in the area of mold before removing [throwing out window of room is ideal]. Also, would clean the air ducts first and make sure the intake is not drawing in the mold or put a HEPA filter in it while doing mold remediation. We also caulked the spaces between wall and floor when we had new carpeting put in and hope to close any open spaces to indoor walls in case there is mold in there as well. If you remove mold from a room, it is wise to vacuum-wash-vacuum room before opening it up while wearing a N95 air mask. This may prevent cross-contamination in the entire house. We may have not done this correctly in the past, so are having to vacuum-wash-vacuum every room and everything in it in the entire house now! I would presume that if you have a filter, to clean it weekly while this is being done, with a HEPA vacuum. If you look at my threads, you can also see, health-wise, what is working for us. My son just got his first holding-steady-improving diagnosis today, which we are very excited about. Best choice we have made is to get rid of the mold to enhance the health of everyone in our house! Best wishes! It can be a huge job but well worth it if your family is healthy!

Hi Susan: Dr. did some of the recommended testing by Dr. Shoemaker (C3a; C4a; TGF Beta 1; MSH; VIP; TSH, Free T3, Free T4 per Dr.). Following is my research ideas about what they are for: VIP--inflammation that develops in pheriphery (not the brain) and could result in production of regulatory harmones affecting MSH. MSH--Melanocyte stimulating harmone. MaRCONS destroy this. TSH+T4F+T3Free--These all have to do with thyroid function (my is taking thyroid medication) TGF-Beta1-a high number here indicates lung problems (my son has been diagnosed with 2 pnuemonias in lungs and mold illness). All of these just confirmed what the ART testing was telling us already. The Dr. today just mentioned the C3a & C4a and what they meant. Maybe she was referring to my son's case specifically, not sure. We did do testing for mold, first with petri dishes from Home Depot (very inexpensive); then with ERMI testing. We were really surprised at how high ERMI came back. We thought all mold had been removed from our house... Since then we have found a bit of mold in our kitchen and bath and some yellow spots on the back of a large fine art painting that spent 3 yrs. in South Africa. Do not know what it is but we took it out of the house. Still have one more of those to take down, and not sure what we will find. We are still in the last 25% of cleaning the house top-to-bottom and remodeling our upstairs as a way to see if there is any other mold. Also, just wanted to remove the carpet in case it was in there. Hopes this helps.