JuliaFaith

Thank you, Michael, for your feedback. Do you recall the dosage?

My ds14 is taking this again. Last time he flared for 5 days, baseline for 2, flared for 4 days, baselined for 2 etc. until flaring for 2 days then had T&A. So he never really finished with it. He started again 3 months ago and has only had a 2-day reprieve here and there during that time-frame. The dosage recommended by the dr. put it at 200-400 mg a day. So I started out at 200 for 5 days then went to 300 for a few days with no flare-ups. Then, as soon as he started on 400 mg the flare-ups started and continued. Someone on this forum had pulsed their dosage but cannot remember who it was. Just to give him a bit of a break, I went down to 300 mg and that did not help, so went to 200 mg which has given him some time to recoup a bit (and do some school work) since he is almost back to baseline. Realize this must be good for him (Babesia?) but trying to find some middle ground. He sees dr. again in a few weeks. I figured since she had 200-400 mg that we could work with it a bit. I do make a 'cocktail' with other juices/herbs with the artemisinin. Any ideas would be welcomed. Thank you.

For heavy metal detox we started with the following (per dr. instructions): Detox Deodorant - Apply to bottoms of feet daily at bedtime. If well tolerated, apply to underarms and neck Green clay (good toxin binder) - 1 tsp. completely dissolved in organic berry juice at least 30 minutes before meals or 1 hours after meals twice per day. Follow with 8 oz. of water (it seems he also took this away from abx) Now that we are 1 year in this protocol, my son is still doing the detox deodorant, in addition to, 3 salmon oil and 20 chlorella 15 min. before meals 3xday. No more clay, for now anyway. My dh started using the salmon oil/chlorella as well, just to try it, and feels so good he is continuing it even tho he has not been diagnosed with anything (not yet anyway). Good to hear you are tracking down treatment and finding some good doctors to work with on treatment. Best wishes.

Interesting because my dd9 who is supposedly toxic with heavy metals had no high metals in her hair sample. We'll keep a watch on that! It may be the case if the metals are staying within her body rather than detoxing out. Interesting.

If this is from a hair sample, my son's dr. was glad to see his heavy metal numbers rise on the 2nd test because that means they are being detoxed from the body. Not sure about the tests.

DUT - FYI on the Rosetta Stone inform., someone on this forum put it plainly when they said that it just means your daughter may have a more difficult time detoxing mold. My son's doctor said that everyone has something come back on this test. Needing help to detox in that area is helpful if other tests are pointing in that direction as well.

This is a just a guess based on the instructions: DRB1: No recognized significance DQB1: Mold DRB3: (01) 52A Mold Hope healing is going well with you and your family.

Have you had any luck treating for viruses? We are kind of stuck trying to get rid of the 3 my son has been diagnosed with having.

Just a heads up, the BEG spray does burn when you start it. My son got used to it (or it stopped burning) after a few days but several on this forum have commented on it. Good luck!

MARCoNS (Multiple antibiotic resistant, coagulase-negative staph). Per Dr. S these destroy MSH. My son's staph was found in the sinuses and treated after that. Sounds like for S&S's child it was found in the gut.

My son has the same symptoms when he is out of breath or just exercising. He is just not getting enough oxygen is my belief. Have read that it is typical with Babesia, pnuemonias, viruses, just to name a few. Have read that if the TFG-b1 is high the lungs are affected. This is one of Dr. S's recommended tests. Also, my son has high hemoglobin and hematocrit levels which can indicate low blood oxygen levels which may be related to viruses. Read about this somewhere - just have the notes on the test result page. Someone more knowledgable may have more info. on this.

My son did not respond to much of anything before going to a lyme-literate doctor. Our last chance at PANDAS treatment was IVIG but I decided to bring him to an Llmd before going that route just to make sure we were on the right track. What the heck, it was just one appt. It was the best choice I ever made. As you can see by my signature line, we have found many things since then and are treating with many successes even though he is not there yet after one year of treatment. Best wishes for your little guy!

It is a 'double-edged sword' - you want to find out what is wrong but the more you find out the more complicated healing gets. So know where you are coming from. If it is any consulation, the MARCons treatment was much shorter than any of the other treatments my son is in the middle of, and seemed to bring him out of the fatigue he was experiencing. Insurance even paid for the BEG spray! Best wishes and keep posting so we can follow your progress. //By the way, I found old stool test results given by another doctor before we started on the lyme journey that had staph/strep in it but the doctor said not to worry about it. My son, as far as we know, has never had a strep throat.

Ds was becoming very hyperactive recently and with home schooling it was getting difficult. My stress level went up, the more hyper he became. Then was just happening to look at ingredients on one of his supplements for adrenal support and therefore, thyroid support (AdrenaVen), and noticed that some of the ingredients are like caffeine! I immediately halved his dose and the change was amazing and my stress level went way down. Then he flared, so I went up 50% (was on 2-morn and 2-lunch) which is 3 a day, thinking that may have caused the flare. This increased his hyperactiveness pretty quickly but maybe not as much as when he was taking 4 a day (I gauge this by how crazy I feel ). Mentioned this at the dr. appt. and she said it could be his body does not need it anymore, but the lab that did blood draw forgot to do these tests. So back for more blood draw and will see what the outcome may be.

My son's doctor has asked him a few times if he has frequent urination issues (which we have not noticed). But his ADH is undetectable which, I believe, is why she prescribed Desmopressin, which treats frequent urination. Not sure if there is any connection.

Thank you for all of your input. The Gc treatment sounds a bit too new for us right now. Hopefully, some other options will present themselves. The autohemotherapy is sure interesting. Will put that on the list to ask dr. about at next visit. Keeping the nebulizer with iodine/garlic going until the viral and babesia load goes down.

Just a recap: Son went back to school and his flare-ups lasted longer and longer after going to school. Now I bring him to the library and the next day he is flaring all day. He gets a little exercise and feels bad the rest of the day. These flares do seem to be a 'bit different' from ones in the past. Had doctors appt. and she said he is muscle testing well, however, his test results show that CMV, MONO (which we never knew he even had), and HHV-6 viruses are not subsiding like they should be. He has been on Valtrex and Viressence (herbal) mixture for close to a year now but is still showing high in these viruses. Doctor has tried twice to get valcyte approved by insurance with no luck. She is going to try a third time and that is all (and she does not usually deal with insurance at all). If insurance does not approve the valcyte ($1-2,000 a month!) she is recommending a new drug called 'GC MAF' which is $900 for 10 injections (once a week) with no insurance coverage. The betterhealthguy.com is trying it and blogging about his experience and has an article on it. Anyone know about these or are trying something similar? I did bring a list of 3 viral meds. that I picked up on this forum (FAMIR, Engystol, & Viragrphis) but she said these were about the same as the ones he has been on for a year. Any ideas would be greatly appreciated.

Any good news is great to see! My ds13 still wants to sleep with mom or dad. We are hoping that this will change soon...

My sons #'s: TGF-b1 - was 9800; Now==2200 VIP - was <10; Now= still <10 MSH - was 11; Now =17 Doctor thought TGF-b1 was probably much higher before we started remediation for mold. Your child's numbers actually look much better than my son's. Thought the comparison would be interesting.

We were just discussing this with DNA testing recommended by Dr. S. If your test comes back a certain way, it could mean that your body as an inability to identify and excrete mold & lyme toxins. Then, in turn, does this relate to the mythlation issue?

I wonder if cleaning your family room (vacuuming/washing/vacuum with mask & Hepa filter in vacuum) would make that room lower. Want to plastic it off and have a fan going out the window if you do. We cleaned our whole house (whew!) because of possible cross-contamination per the chemist at Mycometrics. Left large furniture in the room and covered it with a sheet during first cleaning and then removed sheet and vacuumed & washed. Just an idea.

By now you know that the DNA tests for markers that might indicate the patient's body's ability to detox from mold & lyme. Probably does not tell you that you have it. If you do the ERMI test, it will give you a long list of molds and indicate the level of each that was detected. The top section of the test are typically indoor molds and the bottom half are typically outdoor molds. Usually the outdoor molds are not the concern as much as the indoor. Everyone has mold in their house. They are all different colors and present differently. I researched the ones that tested the highest in my house and saw pictures and descriptions of them (only about 4 different kinds). To detox, my son does: 20 tabs. of chlorella 3xday along with 3 gels of salmon oil (taken at the same time) before meals; Detox deoderant; daily epsom salt baths. The Cholestyramine is a prescription so may be able to get it paid for, whereas, the chlorella & salmon oil are not. My research on cholestyramine turned up some interesting side affects which made me glad that my son is using chlorella, but everyone does what they have to do to get healthy. My dh started taking the chlorella/salmon oil and feels so good he is continuing too (has not been diagnosed yet with any of this). My son's doctor works in the same office as Dr. K which is great because they all discuss their cases with one another so it is like a whole team is working on your health issues. We have the opportunity to see Dr. K but he works with 2 other doctors in the room (one of them is my son's current doctor) and is much more expensive. It is good knowing that the opportunity is there if we need it but testing is showing improvement so we are staying with the current doctor. My son's doctor did have a phone conference with Dr. S on the DNA results. She seems to think that everyone has results come back but not everyone is going to be affected by the results (according to Dr. S that is 25%). Was recommended by dr. to buy Dr. S new book. I did not read his chapters on lawsuits but the rest of the info. was interesting (just wish there was an index so I can find certain subjects again). Sorry it took so long to answer your questions (older son just had shoulder surgery). Best of luck with all of this. We redo our ERMI in another month to see if it is low enough to stay in our house. FYI - There was a study (cannot remember who did the study - maybe one of these doctors) where they put mold in 2 petri dishes. One of the dishes was put in room with high electric magnetic fields (EMF's) and the other one was not in a room with high EMF. The mold in the high EMF room grew 600 times faster and was more much more toxic than the other one. Also, the schools in Europe do not allow wireless electronics in the schools because of their high EMFs. This may become more of a topic in the future...

S&S may be on the right track regarding detoxing or inability to detox. For four halotypes (number results), the dr. indicates that they indicate the inability in identifying and excreting mold & lyme toxins. These are: 15-6-51 (which my son has tested) 16-5-51 11-3-52B (dreaded - not sure what this means) 4-3-53 (dreaded) On another note, our ND says that everyone has some of these come back and that it is just another piece of the puzzle for treating but may not have any impact on whether you get these or not.

My Ds is seeing an ND. She uses allopathic (abx), natureopathic, & homeopathic approaches. Son has been on abx once, but has also been on Alinia which seemed to have some abx properties along with a lot of other things (i.e., anti-parasitic etc.). He is now using Berberis Formula, which from my reading appears to have abx qualities as well. It seems that the natureopathic meds (herbs) that we have used are treating many things at once, which has worked well too. Have you tested for MARCons? Nasal swab? Not sure what doctor you are seeing but an ND may be an option. The cost for the natureopathic is expensive which is difficult. Did just find out that our FSA savings account thru dh work allows these over-the-counter meds. but you have to have a prescription, so that saves you at least 15% or more. Our insurance only pays about 25% of doctor visits (out of network) which is not great either. It is possible to slow down treatment which would cost less but would take longer for healing. On another note, my son did the DNA testing and Dr. S states that people with his halotype (per test) do not get better with Abx alone - so this was a good thing to learn, after the fact. Have seen you on here for a long time so I am hoping you find some answers and healing soon. Take care.

It is looking like 'mold' could be an issue. May be wise to look over your house a bit. Keep detoxing if you can, until you discuss with doctor. Mail me if you want the Dr. S Overview of his recent conference from the Lymeguy website. Best wishes!