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JuliaFaith

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Everything posted by JuliaFaith

  1. DS was swabbed while asleep in the sinus for MARCons, coagulase negative staph, mold growth. The doctor was shocked that it came back positive with the first try. She thinks that since he was asleep the ENT was able to swab more deeply than normal. Have you done an ERMI to see if mold in home is 2<? After remediation we are going to do ERMI again in 3 months to make sure level is low enough for son to remain in the home. Just a thought.
  2. Beautifully put LLM! Thank you.
  3. My son's doctor said the C3A was indicative of lyme. Another doctor whose book I read on 'mold illness' thought the numbers on this test actually should be 0-940 range. My son's test was 157 and he showed post-lyme on a DNA test that was done at the same time. Now on the C4A, my son's doctor said it showed 'mold' indicative numbers. The range I got from the book (not son's dr.) is 0-2830. Son's test number was 2632 which backed up doctor's diagnosis of mold being one of the issues my son is dealing with. Someone else on the forum said this test reflects other things as well, maybe inflammation. Hopefully, they will add to this post. His tests were run thru the Nat'l Jewish Medical. These took a while to get back 3-4 weeks and had to pay out-of-pocket. But these same tests are being run again, right now, and they are being run thru LABcorp. Hopefully insurance will cover these this time around and they will be accurate. Son has also been diagnosed with lyme, babesia, pnuemona (2), thyroid issues, sinus staph (hopefully gone), PANDAS, that is all I can remember at the moment. It looks like your son is showing activity in both of these which could give your doctor more information on treatment. Not sure if having numbers on either of these is a good thing, but they are relatively low, which cannot be a bad thing. Oh boy, sorry it has been a long week!
  4. Another option, from the natureopathic side, is putting 3-4 drops iodine in nebulizer once a day (night) for one year. My son has been doing this for 11 months and his lungs are improving and showing signs of recovery. He was also diagnosed with Chlya pneu as well. Great improvement and hope to be done in another month.
  5. This may be too late, but I would also swab the nose while asleep and check for MARCONS, coagulase negative staph, and mold growth. We did this and had some more surprises of which some were easily treatable but helped my son heal faster and feel better.
  6. For my DS13, allopathy (Western), natureopathy, and some homeopathy, is what his treatment looks like. Sometimes people put natureopathy and homeopathy in the same category, but they are quite different. Just a thought.
  7. Wow - impressed with your son's progress. Hoping for continuing recovery and positive results! Thank you for sharing your good news.
  8. I ask about weather only because mold loves moisture. So if he were feeling worse after a spell of rain or high humidity, it would make me think mold was "blooming" vs. if he felt worse on dry, sunny days. So tracking mold-friendly conditions might show you a pattern. The trailers introduce a whole host of possibilities. Trailers aren't well ventilated, could be great incubators for germs or mold or formaldehyde or other toxins. I hate carpeted classrooms. My son was much healthier once he "graduated" from our elementary school (all carpeting) and moved into the intermediate school (grades 3-6), where all the rooms are tile. Of course, we also started treating for lyme etc then, so that had a lot to do with it, but he stayed much healthier, far fewer colds, when he got away from the carpets - I think they must be great little nurseries for germs. It's a tough call, because if he's enjoying the social aspects and growing in that respect, pulling him from school isn't the first thing you'd want to consider. In a perfect world, you could have him just go to classes in the building and not in the trailers for a few days and see how he did. But I can't see how a school would go along with that. If all of his trailer classes were in one half of the day, say in the morning, you could make excuses for a few days and bring him in late, see how he did when he only went to classes in the building. But I doubt it would be that easy. Just tossing out ideas. Hello again LLM: Interesting you what you mention about trailers. He was in several for 6 yrs. before he got ill. Some were temporary and are still there after 12 yrs. His 1st period is in one of the portables, so may be able to not attend that class for a few days and see if that helps. Great idea. Thank you so much for the suggestions!
  9. Interesting information about the BBB. He has never had strep before and tonsils are out. He definitely may have stress from the new environment/homework etc. I have to say that he seems to enjoy it all a bit too much. Also, he has stated that several kids have gotten sick and not showed up for classes. That was one of the variables (along with mold/EMF explosure) we were not sure about - his immune system and its' ability to deal with all of that. In the last 11 mos. he has not been around a lot of people and only had a stomach flu for 2 days so he has been lucky there. He is still using a nebulizer with iodine (once at night) and dr. added liquid garlic drops (Allimax) to it as well to ward off illness. Love this forum and great thinking in the posts. Thank you!
  10. LLM: These are good ideas. His symptoms are typically like when he 'flares' with new meds (flu-like symptoms) except he has not been on any for 2 1/2 weeks that are new. He has 6 classrooms and 2 of them are portables with carpeting. The other 4 do have carpeting as well. I have been in the building for over 8 yrs. and never seen any water problems. He is still on 60 chlorella/6 salmon oil a day but one thought was that his first dosage is 7 am. and the next is 3 pm. Was not sure if this is part of the problem. So difficult for them to take even vitamins at school. Why do you mention weather? Will start noting that. It was really sunny the first 2 weeks but the 3rd was cooler and cloudy. Thank you so much for the ideas.
  11. He did say that he is really tired the day before he started feeling worse. He did school all summer thru an on-line school but being in a junior high (after 1 yr. homeschooling) is new. Thanks for the input.
  12. ds13 was holding steady doing great until he returned to school. Went 2 1/2 days to school and then had a 'flare-up' for the next 2 1/2 days. Thought it could be the Alinia he was on and since it was near the end, thought it might be the 28 cyle on some of spiro. Then went to school 3 days the next week and had 3 days feeling ill again. Thought it might be the excessive exercise because he was biking to school, running in p.e. and started soccer again. Now, he injured his calf muscle last Sunday, went to school Mon/Tues. (on crutches) and was home feeling ill again the next 3 days. Now I believe it is not the exercise, but am starting to think it may be the school. Posssibly mold? He seems to be enjoying school quite a bit and has several new friends etc. Have a doctor phone consult on Tues. (She is out with a new baby.) Any ideas would be welcomed?
  13. When we did our remediation we took all the precautions recommended - plastic taped up double; mask etc. even on rooms we just cleaned. We did not see any mold in our house but our ERMI test came back high (of course I cheated and took a swab of the heater filter too). So we started the cleaning taking all precautions, just in case, and did find a little bit of mold in our kitchen & bathroom, so it was good we took all the precautions. My ds doctor knew we were doing all of this, and she covers all scenarios with treatment (Found this out when he had tonsils removed!). We did propolis (also helps raise MSH) in the room my son spends a lot of time in which happens to be close to the kitchen/bath. This helped with mold spores, along with open windows, and also had "matrix microbes" in a spray bottle (mixed with a little water) and every time anyone came out of rooms or whatever, I sprayed that in the air. It also keeps mold spores from spreading. Even sprayed it in the rooms he was in. Now that remodel is coming to a close, I have backed off on spray bottle. Our doctor said she would cover up the mold and not remove it if possible, but we did not think there was mold, so did the remodel on that assumption. There are mold spores everywhere in the air, so impossible to get away from them completely, but you are probably correct in thinking that the remediation is kicking up some more symptoms. It seems we started the remodel after tonsils were removed and had already been treated for MARCONS and on Month 8 of lyme treatment. He is actually showing improvement after all of this and his C4a tested at 2632 a few months back (have heard of others in the 10-20,000 range). These kids are all at different places of healing so is difficult to tell why something is going on but mom's intuition is usually pretty close to right on. Keep up the good work and healing will be forthcoming. You seem to definitely be on the right track. Just wish the healing would happen faster!
  14. How wonderful for your entire family. Will send good thoughts your way for continued healing. Best wishes!
  15. Mold was part of the issue for my ds13 as well. We did a top-to-bottom cleaning only because we had removed mold in the past and wanted to make sure there was no cross-contamination when removed originally. Dr. said even past exposure to mold could be either all or part of the mold issues problem. He attended school in a portable for 6 yrs. which could have had mold issues. We have carefully removed a few small spots of mold (enclosed area etc.) as we have remodeled our upstairs. My dh has done most of the work and we are finally seeing the light at the end of the tunnel. Dr. said that she would enclose the mold instead of removing it but we did not like that idea. Is there some way to 'plastic off' the mold until you can get it out? There is a book on Amazon, I believe, on doing mold removal yourself. Mostly, plastic off area, wear a HEPA mask, and treat the item removed as toxic (enclose it in something before removing to outside). Afterwards, wipe down and vacuum (with HEPA vacuum) walls etc. This has not been an easy task by any means. We are so tired of doing this , but have a mold-free (as much as possible) and was able to get rid of lots of extra things. We are planning on the doing the ERMI test again in a few months to see if mold is down to a low level. We also have added a HEPA air cleaner in son's room and a propolis diffuser in the family room. Also, Dr. said outside air would be the best thing beyond these. Ds is also detoxing with chlorella/salmon oil. 20-chlorella/3-salmon oil 3 times a day before meals. He has been on a fungal prescription med. for at least 6 mos. too. Sounds like you have been working on the getting rid of the mold. The big thing is getting rid/away from mold so healing can happen. If you think something may be a problem, it probably is. Best wishes on working towards recovery and following your intuition on figuring out all the pieces of the puzzle.
  16. Heat really gets my dd agitated. She has gradually increased exercising and seems to be doing really well with it. It seems like just the heat can really agitate her even without exercise. Maybe you could have him try to gradually increase his exercise tolerance in cooler places (like an air condiditioned gym, or if you have room at home get a treadmill in a cool area) and have him exercise daily to build up to being able to tolerate PE. At his age he may adapt quickly. I have read how several of the lyme docs recommend to start slow with the aerobic actvity and build up. My dd started with swimming and was running 3 miles on the dry sand on the beach with JR lifeguards in just a couple of months. Thank you for the ideas. Our weather just turned much cooler which should help. Trying to keep a very athletic 13 yr. old from doing too much is not an easy task. He did do quite a bit of swimming this summer which probably helped with his endurance that he has right now. We were in a lake canoeing and he insisted on swimming alongside the canoe on our way back to the launch rather than riding in it. This was at least a good mile. No keeping this guy out of the water if we are anywhere near it! I wonder if the lyme spiros do not like the heat either?
  17. My ds had this test done and from what I read/told by drs. the C4a test is an indicator for mold. The C3a test (range 0-940) is the indicator for lyme. Mold has been an issue for some on this forum. We are still doing 'mold remediation' because of this test coming back high (2,632) for my son. His dr. said that it was probably much higher at an earlier time. We did the test after about 7 mos. of treatment for lyme, borrelia, babesia, mico, thyroid. Also tested positive for MARCONS which a large percentage of patients have if 'mold indications.' Best wishes on your health.
  18. Michael - You know, for the 1 1/2 yrs. he was really ill, any little exercise would make him feel worse. So I feel grateful now that he can do all that he is doing and rarely feel bad the next day. P.E. is a concern for him now too. He said this morning that the PE teacher may ask the class to run a mile today. He did not know if he would overheat and does not want the kids to know he is sick, so he was trying to figure out how to get around it without 'looking weak.' This is his first week in Junior high school. We are just taking it one day at a time and rejoicing in the positive. Hope you are doing well after returning to work. Take care.
  19. Ds is starting to feel good enough to exercise now (after at least 1 yrs. of no activity while ill). After swimming most of the day in 90 degree weather, he felt horrible so we put him in air-conditioned car and fed him ice. This helped him feel better after about an hour or 2. Now, a few days ago, he biked to school, did PE, biked home (uphill 1 mile), and then went to soccer practice a bit later in the heat. By the time he came home (after practice was over) he said all his symptoms (flu-like) were worse and did not go to school the next day. The cooling down did not work. Not sure if it is all the exercise at once (I think he is trying to make up for the last 1 1/2 yrs. of no exercise. ) or the heat. He does have an extra 10-20 lbs. of weight on him, maybe from thyroid issues. He was on Alinia at the time, which I wondered if that was part of it. Any ideas? Thanks.
  20. Sptcmom--Thank you. Really appreciate your contributions to this forum!
  21. A few months back, I spoke with a CRT doctor who discounted everything that I was currently doing to help heal my son. It shook me to the core, because it made me doubt the path I had chosen for my son which I so firmly believed in. After further evaluation, I decided that the path we were on was the right one and healing is happening. I appreciate reading about anything and everything so that I can make as informed decision about my child's health as possible, no matter if it makes me doubt what path we are on temporarily, because it is about my son's healing. I can pick and choose any information that is presented and make my own decisions about what step or dr. or anything to take next. In my opinion, the more information presented, the better. Thanks for reading.
  22. Your points made are very interesting and scary at the same time. This whole journey has been like that I suppose. I do appreciate hearing your feedback on all of this. One question that came to mind is "how do we know when the immune system is doing what it should be doing?" If we cannot tell by symptoms because they may have disappeared, and most testing is not that great or accurate, then what? Also, are you also saying that most people on this forum have problems with detoxing? Whether genectically or otherwise, and therefore, should continue detoxing their entire lives? Ideas would be welcomed. Thank you. Julia
  23. Can only give you our experience with bee venom. Son had sore knee so we tried it on there but the burning was too intense (should have read the directions better because when it starts to burn it is time to massage the area which helps). He only would try it once. I have a knuckle on my right hand that swells up if I use it too much (i.e., gardening) and it gets red and swollen. Put that bee venom on there one night and woke up to a knuckle that looked almost normal. All the redness was gone and most of the swelling. It says on the tube we bought ($50!) that to get good results you can use up to 14 days. Have used it several times since then on my hand and it works really well. Interesting and varied uses for it too.
  24. Just an FYI, my ds13 did an on-line school last year for 7th grade. It was much better than trying to get the school district to provide more than 2 hrs. of tutoring and running back and forth getting homework etc. He was very ill so the on-line seemed our only option and it was free. On another note, it was the most difficult thing I have every had to do. I also have been a teacher, but dealing with his illness and trying to get him to do school work was very difficult but seemed necessary. His rages have only ever been directed at me and were only about school work. Thank goodness those were reduced substantially after a few months of treatment and things got better, but I do not know how many 'contracts' we wrote up together to solve the school 'crisis's' that we encountered. I jokingly told a friend today that after that experience, I could do anything! Now, after 11 mos. of treatment he has returned to 8th grade in the jr. high. Has not been in a public school since the last qtr. of 6th grade so he was a bit anxious. His first day, hopped on his bike and rode to school and had a great time. I did errands afterwards and completely fell apart emotionally in the car realizing how far we had come and how joyous it was to see him go back to school! We are hoping for continued healing and continued public school. Best wishes on making the decision that is right for your child. You will know what is best.
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