JuliaFaith

Had Dr. appt. today and found out with testing that mold is the predominant problem. Tests results that showed this are: C3a (lyme) - 157 (range 0-940) C4a (mold) - 2632 (range 0-2830) Son is holding steady and showing the beginnings of improvement. Was told that 18 months (now on 8 mos.) is the usual treatment time-frame, but since we did T&A, mold removal, air quality improvement, and supplements, as well as, his age, he may even be well enough before then. She said to give it a couple of months to start seeing some faster/better improvement in his symptoms (headache, stomache, muscle aches). Sounds like lyme will also be in his body but if he is healthy it will be dormant. In terms of supplements we took a few out (CVE [bioPure]; Vitamin D3; & BRM4) thank goodness. A Chlorella I found checked out good as well and cost way less than BioPure and is called Sun Chlorella A. Dr. also recommended starting an acct. with Vital Choice in Bellingham to get salmon oil (the one we have is $40 a bottle!) and other more affordable options. Lastly, she also said that the more my son has MILA (by Lifemax) the less he will need in terms of supplements. My guess is the salmon oil since MILA is high in Omega 3s. We put it in water overnight and add to his oatmeal, smoothies the next day. It has no taste but is jello-like in consistency. Will refill BEG & VIP nasal spray one more time (3 mos. treatment) and not refill again. These are for the MaRCONS & Mold. Recovery is on the way after 16 months of flu-like symptoms now including all drs./specialists combined! It has been 8 mos. of treatment with this ND. So glad we kept pursuing new doctors when other doctors had done all they could. Best wishes to everyone else on this forum!

If you have a naturalopathic college nearby (or not nearby) they would be a good resource. We have Bastyr College in Washington State. Not sure if they have other colleges elsewhere.

Ds13 has been diagnosed with the following: -PANDAS (son did not respond much to any of the treatment for this) -Lyme - treatment is ongoing but not aggressive right now, same for Bartonella/Babesia (Did have some flare-ups/rashes when treatment was more aggressive) -Bartonella -Babesia -Mico and another one I cannot remember (with Iodine nebulizer daily Dr. said it would take a year to get rid of - after 8 months is showing signs of improvement in the lungs thru ART testing) -MaRCONS (Dr. said 3 months treatment - we are on 2nd month-fatigue seems pretty much gone) -Thyroid condition (gained quite a bit of weight but hoping this will also, with treatment, go away) -Mold illness (just found this one - it could be preventing rapid improvement on lyme and other treatment) Currently on 3 months nasal spray treatment and trying to make sure there is no mold in the home which is taking many months and lots of $$$!) Dr. said it is like an onion where the layers are revealed as treatment progresses. I just hope we are on the last layer!!!! Best wishes for you and your family.

On the mold itself: The first thing I would do is cover the mold area (as much as possible) with plastic and tape it completely around the edges. At Home Depot we found a pretty inert spray to seal in mold until you can remove it (before enclosing it). It seems like you have to apply it weekly (MoldControl - by concrobium) Healthwise: Two things we are doing while looking for mold and remodeling is the air filter (blueair - bought from Costco) and a propolis vaporizer in the two rooms my ds spends the most time in. In addition, we are using Matrix Microbes (BioPure) which you mix with water and spray into the air wherever you think mold spores may be as needed. When my son went in the bathroom to take a bath, I would spray it in there since we had not remodeled in there yet (have since found mold in there as well!). We are in the middle of all of this right now and it does seem overwhelming! After cleaning/remodeling the house, we were instructed to do the ERMI DNA test again to see how it comes out and to see if we can stay in our house. We are also thinking that a HEPA filter added onto our current heating system may be in the near future (we only have an electrostatic one now). Oh, and just read on Dr. Shoemaker's newsletter today that they are trying to develop an inexpensive 'wand' that can be used to indicate mold or not. Sounds like one of those pregnancy tests. Will be looking for that in case we have to look for a new home in the future. Although, in our neck of the woods (PNW) it seems that to find a house with no mold would be a miracle!

This is so great to hear! May your son have ever-increasing better health. My ds13 was a star soccer player when all his health issues started and just a few months ago started doing some goaly practice with me (and 1 friend) which is sooooo good to see, even though I come home covered with bruises! This was the first time in over a year!

Also, on Shoemakers website there is a section that tells you HIS reference range for results...it's not the same as LabCorp/Quest. I agree with him needing to update his website! I heard somewhere (oh -- in Dr. Shoemakers book ) that labs sometimes change their reference ranges based on odd reasons so would look at Dr. Shoemaker ranges first.

FYI - just received bill from NJH for the C3a/C4a tests - $159 (~$80 each). You have to pay up front and try to get reimbursed by insurance. Your daughter is a trooper! So did labcorp automatically send these to National Jewish? My daughter had these run several months back and they went to Cambridge Biomedical. Both C3a and C4a were within normal limits, while she had decreased MSH, low VIP, low ADH, and TGF-b1 on the upper end of normal range. MMP-9 was normal. Our docs (2 of them), took this to mean that there was not a mold problem. When I mentioned that it was strange that the MSH, VIP, and ADH all looked like inflammatory mold or lyme illness, yet the C3a and C4a were normal, she said "they're all coming back that way". Makes me question whether labcorp was doing the test correctly at that time and if we were to re-draw now would it be different. I wish Dr. Shoemaker's website was up to date regarding how to do these labs and where to make sure they are processed. The blood was drawn at labcorp but Dr. D asked them to send the C3a/C4a to the National Jewish Health (with a phone call). They had done it before and it was not a big deal. It did have to be timed correctly. NJH would not accept deliveries on Fridays. Dr. D had a phone consult with Dr. Shoemaker too.

FYI - just received bill from NJH for the C3a/C4a tests - $159 (~$80 each). You have to pay up front and try to get reimbursed by insurance. Your daughter is a trooper!

I liked the brazil nut idea too. A good break from the cost of supplements. He did show an increase in vitamin absorbtion last time around with his hair test. Hard to tell since it is more on an internal level.

Ds was on selenium supplements a while back and now is taking 4 brazil nuts a day in place of those.

Ds13 just had T&A. His ND recommended it even though he had never had strep throat, just sore throats. After he was ill for 1 yr. I decided it was time to do it if an ENT recommended it. His ND also said that his healing would be extended and may not happen if the T&A was not done. The deep nasal culture (for MaRCONS) was done while he was asleep but can be done while awake. Have heard it is very unpleasant though. ND was surprised to get a positive so quickly but thought it may be because it was very deep because he was asleep. His test came back positive for several things including strep..., staph... not sure what all they were. He is now on BEG spray (Hopkinson drug) for the MaRCONS and has healed from the T&A. It was difficult going through the healing for him because it took 2 1/2 weeks and he was in quite a bit of pain and that was on top of flu-like symptoms for a long time. His ND said he will be on the BEG spray for 3 months. He is holding steady again and has not lost any ground in his healing. ND said he may have some flare-ups after the T&A (PANDAS like) but after the 2 1/2 weeks of healing, which is normal, he was doing well. The lab work on the tonsils was minimal and it said they were enlarged and that was it. It looked like they measured them and looked at them and that was it. His ND may have received a more in-depth report since then but have not heard. The ENT office said they pretty much all come back saying the same thing. Hope this helps some.

Hi Laura. Sorry it took so long to reply, alot going on here right now! Still on niacinamide. Have not had time to research the side-effects, if any. He does have to take it with a meal. The affectiveness of it is really unseen. My ds was on curcumin for a long time before this for inflammation. Also taking salmon oil, which I believe helps with inflammation as well. It is supposed to be taken with his Chlorella. Not sure why exactly. He does seem to be holding steady with energy improvement, even after a flare-up, which he was only having about once a month while on Abx. Now he is off Abx so will be interesting to see if the flare-ups continue. We do use ibuprophen during flare-ups as well. Treatment now focused on micotoxin/mold illness with a little bit of everything else thrown in (i.e., lyme, mico, thyroid etc.). Hope this is not too late~!

This is an excerpt from his current newsletter: As we enter the months with the greatest incidence of tick bites and acute Lyme disease you will read a lot of verbiage about prevention of tick bites. Please discard most of what you hear as the ideas are not logical. For example, have you heard to use insect repellents like DEET? I use these products every day to reduce the number of mosquito bites I risk entering the forests and swamps of this area. But I never saw any reduction in tick bites. Why? Ticks are arachnids, like mites and spiders. Permethrin is an excellent tick repellent. The Army puts permethrin into the uniforms of soldiers stationed in tick endemic areas. But the commercial permethrin-containing sprays were pulled from the market last year. Why? Ask the Feds. No logic touched that decision. So after I was permethrin-less and had another beautiful ECM rash from a tick bite last spring, it was time to visit the farm store. There in the horse chemical section was 10% permethrin, used by horse people all the time on their animals. Simply put one ounce of the stock solution into a 32-ounce misting container, fill with water and spray your clothes. Good bye ticks. While you are there, pick up some rotenone powder too. Take two ounces; dissolve in a gallon of water. Now take cotton balls, dunk them into the rotenone solution and use tongs to place the soaked cotton balls at the end of your gardens, plantings, trees and wildlife edges. I suggest you do this at dusk to try to make sure your dog or cat can’t play with the cotton balls. In the morning, take a look at where you cotton balls were. Just about all will be gone. Mice (mousies, as they are known around here) love cotton balls. They take the cotton to line their globes (nests) quicker than anyone would believe. Now the rotenone soaked cotton kills the ticks on the mice as the mice sleep away. Keeping the ticks off mice will protect you far better than shooting neighborhood deer!

Our local school offered a 2 hr. tutor once a week so I withdrew my son this year and have him in a free on-line school that has worked pretty well (as good as it gets with a child who has flu symptoms every day and is 13!). He brought his 504 with him. It is called K12.com. I initially thought you had to pay for their program but there is a part that is free. It is available only in certain states so not sure if yours is one of them. Since my son is 7th grade about 25% of his work is on-line. As he progresses (not sure if he will be in it next year) the on-line portion increases. There is a 'teacher' that your child has to contact once a week and we have a phone conference once a month. The rules for testing etc. are the same as public school except we have a very flexible schedule. There are some requirements and we try to meet them for weekly time (25 hours). He works on the weekends to get caught up and we go to the park on sunny days to do school work. He also will be finishing up classes throughout the summer as he missed a lot of time this year. PM me if you want any additional info.

Susan: My son has been complaining about the taste of the Chlorella tabs.

Thanks...I will start taking the chlorella prior to eating. That's a total of 20 tabs daily, correct? It is actually 20 tabs before each meal. I know, it seems like a lot (they are small tabs) but he has shown a huge need to detox. You may want to start at a lower level until talking to your LLMD.

DS was taking the PioPure clay 1 tsp in the morning with liquid and one right before bed. He is now taking the chlorella and not the clay. He was instructed to take 15 min. before eating, 3 times a day (20 tabs - PioPure Chloella Vulgaris-for heavy detox).

Thanks for sharing that. My daughter's doctor plans to prescribe the VIP nasal spray. Were you tested for MARCONS before the VIP spray was prescribed? Dr. K's nurse did a presentation at his conference and mentioned that you shouldn't do the VIP spray if you have MARCONS. No explanation as to why though. So you weren't doing anything else different at the same time (like cholestyramine or mold remediation)? First: Cholestyramine to clear out toxins and keep them out. Second: After confirmation of MARCONS, a strong antibiotic for a month, plus the BEG spray. This was four years ago, when VIP was not available. Felt better. Fatigue lifted. At this time, I didn't realize I was living in a moldy home, so I never completely got over things, although things were better than the grave illness I suffered before. Moved out of moldy home, continue to take drastic measures to keep air clean. Feeling even better, however, my body is so hypersensitive, I am still on cholestyramine. Third: Starting taking VIP: about a year ago. Health started improving by leaps and bounds considering the prior three years of slow progression. I still take cholestyramine for everyday toxic exposures, but the VIP has limited my reactions to those exposures. I'm hopeful that if I continue to take VIP, it will heal me completely! I am a rare case. Of the 25% mold susceptible, I am part of the 1% that has refractory illness. In may case, VIP has been a God send. I hope that others will not need long-term treatment that I have needed, usually cholestyramine can do the trick without VIP. But, the most important thing to remember is that you will never get well if you continue to be exposed...that is what happened with me and why I had to stay on cholestyramine so long. Children's immune systems are not mature like an adults. They will be more susceptible to bad air than an adult. Clean even the little bit of mold on the window sill you see, even if you think it couldn't possibly be making your child ill. Even minute amounts will make a mold susceptible person sick. Thank you so much for sharing all of your info. It gives me hope for the future.

Here is the course of treatment that Dr. Shoemaker recommends in his book "Surviving Mold": 1) Collect lab information 2) Perform ERMI testing to ensure there is no exposure to a building with ERMI greater than '2' if patients MSH is less than 35 and C4a is less than 20,000; or no exposure to ERMI greater than '-1' if MSH is less than 35 and C4a is greater than 20,000 3) Removal from prior exposure (i.e., treating post-lyme, no working, living etc. in molding environments 4) Correcting toxin carriage with CSM and/or Welchol 5) Eradicate biofilm-forming MARCoNS 6) Eluminate gluten if shown in positive blood test and celiac ruled out 7) Correcting elevated MMP9 8) Correcting ADH/osmolality 9) Correcting low VEGF 10) Correcting elevated C3a 11) Correcting elevated C4a 12) Reducing elevated TGF beta-1 13) Replacing low VIP 14) Final check to verify stability off meds Our doctor is not following this order, but I thought it was informative (even though I do not understand all of it) .

DS was diagnosed with MaRCONS about 4 weeks ago and has been on BEG nasal spray since then. The Dr. said that he needs to continue this for 3 months and will add in the VIP spray (not sure for how long - sounds like 3 months as well).

Did you do any of the other tests as well (HLA PCR+MSH+VIP, TGF-1, TSH+T4F+T3Free). Will be interesting to hear the results of these tests.

Thank you for the info. Very good to hear about some of the products we were recommended to try. His cocktail is still the same "viressence/quintessence" no propolis. The bee venom was just for lingering pain from tonsillectomy and a slight knee strain from soccer. I have a knuckle that may have arthritis that has really been swoolen and aching. One application and the next morning the swelling/redness was practically gone. Can use it for 10-14 days before taking a break from it. As for the MSH, I believe the VIP spray may be very helpful with that based on Shoemaker's book. According to a excerpt from his book, some patients had relief in 15 minutes! He also states that it should only be used after prior steps are taken which I will post as soon as I can. DS doctor believes that a buildup over the years of certain toxins could be the result of his illness. We have removed 3 rooms in our basement of mold over the past 10 years. So not sure if we are dealing with continuing 'mold illness' of if once his toxin levels are improved will not be such a problem. Difficult to figure all of this out. Glad you were able to attend Dr. K conference.

DS just started on BioPure Chlorella vulgaris. He has to take 20 pills (small green) 3 times a day 15 min. before meals. He does not like the taste. Dr. said we could mix in a smoothy. Oops - See Michael mentioned this already. Lots of liquid recommended.