JuliaFaith

If there is not too many holes my dh uses the riding lawn mower exhaust. He puts a flexible metal hose on the exhaust and runs it for a while. This worked when we had fewer voles but now there are a lot more so does not seem to be very effective. He tried a trap that was on a youtube.com video but with no success.

We had air samples done on our home after ERMI mold test came back at '8' (trying to get it to '2' for good health). This was a big improvement from '14' last year but not enough. The attic was thru the roof high in mold! We just had the roof replaced last year and they put several vents on the top. Since these were not there before, the lack of them probably was the biggest culprit, along with water leaks, some kind of old bird nesting (have no idea how they got in!). The insulation was installed wrong which probably contributed to the mold issue as well. So we had someone come in and remove moldly insulation and close off any openings from the roof to the house to keep the air as clean as possible inside. They also fixed the hatch up to the attic so it is air tight. Read that 30% of our home air is from the attic if these steps are not done. Next step is someone coming to do blown-in insulation next week. Total cost will be around $5,000 for testing, sealing, and new insulation! So glad the temperatures have been in the 50-60's this last week! Deducting all of this remediation on tax return under medical expenses. Attached a prescription note from dr. to put with bills. We are hoping, like crazy, this helps move along the health problems my ds and now dh are being treated for. Trying to come up with creative ways to raise the funds to continue now, but glad that we pursued this for health's sake. A whole 25% of the population has a genetic make-up susceptible to mold illness (per Dr. Shoemaker). So when I see CD-57's that are really low on this forum, I wonder about mold exposure. Truly hope that families are exploring the 'mold' piece of the puzzle too. Ds is still taking valcyte for viruses (along with other prescriptions/supplements). It has been difficult for him since his back-to-baseline days are few and far between. But when he has his 'good days' he is very active and much better than when treatment began. Dr. gave him 6-9 months possible treatment time-frame. He is almost finished with 4 months. Still being treated for thyroid issues, but recently was taken off KMAF (homeopathic version of Nagalese treatment) and ADH (2 from Europe). These 2 did not muscle test well last visit. TGF beta-1 (inflammation) numbers have been high throughout treatment. Went down a little bit since last test 3 months ago. These were in the normal range before valcyte treatment began. Still doing heavy detox (chlorella/salmon oil/Detoxamine/epsom salt baths/detox deodorant). Thank you for your continual support on this forum!

Sorry to hear about your experiences, but you are being proactive in your health, which should bring continued healing. Do not know much, but have read that lyme and maybe co-infections wreak havoc on your organs (and, or course, other parts of your body). With that said, my ds14 is seeing a ND and he has been taking all kinds of supplements to support different organs in his body. One of them is for the heart called "Cratoxy (hawthorn berry)". He just takes a teaspoon in the morning. He is on 18 months of treatment and has been taking this probably for the past year. You may want to see a llmd (or ND who specializes in lyme) just for one visit to see what they think. It can be a clinical diagnosis from someone who specializes. Western blots were neg for my son and instead of spending $$ on Igenex testing, just took him to ND. Was the best course for my son since supplements have been expensive. Lyme is sometimes one of many things going on including co-infections. This is a great forum, so more experienced members will definitely have more information for you. Best wishes on your healing and journey.

Do not know what cloatridia is so cannot comment on that. But my son has been on probiotics since day one (several different ones). He had big stomache issues in the beginning, but they are better now, however the dr. still wants him on probiotics. The dr. also thought that yeast was a huge die-off, when he had it recently. She put him on Itraconazole for 3 months, now he is off of it. Has had to do this treatment about 3 times now during the last 18 months. Glad to hear you are treating.

The most interesting part of this article is the idea of the damage that lyme can do to organs etc. that are never treated even if the lyme is treated. Here is the link: http://vitals.msnbc.msn.com/_news/2012/05/22/11811061-jpmorgan-execs-lyme-infection-spotlights-need-for-quick-treatment?lite

When we first got ds14 dx he had to take abx if he had a cough appear at all. Otherwise, it would get worse and worse. Now after 18 months of lyme/coinfections etc. treatment, he seems to be healing like everyone else when he gets a cold, stomache flu etc. Have not used abx for colds for 18 months now but he is home-schooled so not around very many people. But every time he gets sick, he is back to baseline in the same amount of time as others in our family (non-PANDAS).

My ds14 had T&A almost a year ago now. He had never had anything but sore throats with no strep but doctor recommends all PANDAS kids to have them removed because they are a major blockage and major holder of all kinds of germs, infections etc. According to the doctor, he is healing extremely well, although we are probably still fighting mold issues in the home and detoxing with him. Removing the tonsils has probably helped in the faster healing. We also found MaRCONS in a deep nasal swab he had done during the T&A. Which was great since we could then treat that for the next 2 months and hopefully got rid of one more thing taxing his system. Dr. waited to see adnoids before taking them out. It took about 2 1/2 weeks for him to come back from the surgery. It was difficult when he had the surgery because he had been having flu symptoms for a year, so the rest was on top of that. He does not like to take naps, so when I brought him home from surgery, left my older son with him for an hour to get his meds, and when I returned he was sitting up asleep on his hand on the window sill. It was pretty funny looking. The fresh air helped his naseau a bit, although he had stomache issues before surgery, so surgery meds just made it worse. Dr. gave us a list of things to get and use right after surgery some of which are the homeopathic little balls you put under tongue (sweet tasting) for every possible side effect of the surgery. PM me if you want the list/instructions. Did not seem to have any "PANDAS-like" flare up or anything like that.

The biggest thing I hear you saying is that you 'have a gut feeling.' I have followed my gut feeling and it has been the best route for my son. Don't ignore it. We started with a combo of prescrip/natureopathic/homeopathic, and it has been the best thing for my son. He never had any success on abx before with PANDAS treatment and this was the best 'lyme literate' (Natureopathic Doctor) doctor that I came upon when searching on the internet, in our area. It has been the best choice I could have made for my son's treatment. He had horrible stomache pain as one of his many symptoms from day one. Did not know at the time that abx can make that worse, just followed my gut and it led me in the right direction. Now, after 18 months of treatment, my son has his HLA type done and I find out that because of his genetic make-up he would not respond well on abx alone (per Dr. S.). I would have never thought about this or known about any of it, if I had not followed my gut. We are still amazed at how lucky my son and his treatment has been. It has been expensive. If you decide to go in a more natural direction, ideally it would be great to find a doctor that practices using all types of meds/supplements so your child can benefit from everything that is available, not just one type of medicine. You need the best care possible for the multiple components of what you are dealing with. Sending you healing wishes for your family, I know you will do what is best.

Thank you for sharing this info. It may come in handy should we end up going in that direction again in the future. It seems my son had the lyme nosodes once. Not sure what they did. Best wishes on your periodontal surgery coming up and your continuing healing!

I have a 14yr son. He said that he would be interested in being friends. Let me know if she is interested. Maybe they could fb first.

Thank you so much for sharing! Interesting that every professional you talk to has a different approach to things. It seems that I have heard of a 'Duraban' sinus spray. Is that possible? Hope you have a nice day so you can get out of the house during treatment as much as possible. The place we had testing done thru, and are still waiting for results from, has recommended that we totally 'plastic' in the entire attic area whether or not we have mold because the air from the attic comes into the house from the canned lighting etc. and the air is not very clean. We also have my son who has been sick for over 2 yrs. and now my dh is who is getting treatment for sinus/lung issues which is part of this reasoning. This guy does EMF/Radio Frequency testing etc. too but we did not have those inspections done now since we are almost at the end of our funds. Can only deal with and afford doing so many things at once! I always wondered how homes could be built in the rain!

Had to reply again after reading the 2012 conference notes on Dr. S on www.Betterhealthguy.com site. His comments on all of this are paraphrased and very informative. My ds's HLA is one that he says "patient will not get better until remediation of mold is done (less than ERMI '2')." My son has not had a 'normal feeling day' in over 2 years. So we are pursuing the mold issues until he gets/feels better and ERMI number is below 2.

Dr. did some of the mold tests. She did the C3a, C4a, HLA, VIP, MSH, TGF-b1 and some others of her choice. Since ds's first visit of ART muscle testing, she has indicated a high 'mold' level. C3a was in normal range, C4a was almost past normal range (she thought this had been higher before detoxing started big time). Did the HLA twice and it was exactly the same indicating "low msh" and "post lyme" and a 'type' that "will not heal with abx" per Dr. S. Apparently, these are areas he has a difficult time detoxing. There was one of his numbers in the 'mold' section but not sure what that means. After 18 months of treatment for lots of different things, and getting the mold count down in our house (not to 2 yet) ds is not testing for mold but is still needing lots of detoxing. Also, when a deep nasal culture was done while doing T&A dr. had them test for mold in sinuses of which there was no indicators. Dh had the TGF-b1 (high inflammation) test done by the same dr. and it was higher than they had every seen (40,000) so he is detoxing big time (he also has been the one removing mold in our house periodically for the last 12 years). If you read thru some of my prior posts, you can see that we are still trying to get mold numbers down in our house (2 or less) to make sure that ds can get better. Our most recent ERMI #8 (1st one was 13.7) which doctor said was not too bad for those that are healthy but for those that are ill for a long time, the number needs to be 2 or lower. Getting rid of the mold exposure is one of the main things that has to be done to get healthy again per Dr. Shoemaker. The first thing dr. had me do was order the book by Dr. Shoemaker "Surviving Mold" which was the best price on the website www.survivingmold.com Just another part of the puzzle we are trying to fix so ds and dh can heal.

This is not a pleasant subject, but parasite/worm protocol that my ds14 was on for about a 1 1/2 months altogether at begin of treatment, really helped with his fatigue, by leaps and bounds, according to my notes.

My ds 14 had T&A last year and just on a fluke, I asked if nasal swab could be done on his sinuses to see if MaRcons were present. He has never had strep or sinus issues but wanted to check while he was asleep as the procedure is not fun otherwise. It came back positive! Doctor was surprised she got a positive first try, but figured it was due to him being asleep and the ENT going deep. She said it usually takes several swabs to get a positive. We treated the staph with BEG spray for 3 months and am hoping it is gone now.

Love this receipe! So many things that bodies need right now. My ds and dh both take the Chlorella by Health Force (green food) and it tests really well and is a great detox. They take 20 tabs 3xday 30 min. before meals along with 3 capsules (3,000 mg) of salmon oil. This helped get my husband on the way to detoxing before he even went to see the doctor. Just had chlorestrol level checked and it is so low that the doctor does not want it to get any lower, and this is after years of high cholestrol!

We are also gluten free to keep inflammation down as much as possible. Our Dr. had Labcorp send C4a/C3a to Swedish labs the first time but now Labcorp does the testing.

Thank you!

Just for comparison purposes, about 1 year ago my ds14 results were: C3a - 157 (per dr. indicative of lyme) C4a - 2632 (dr. said this was probably much higher before heavy detoxing began) (indicative of mold per dr.)

Well, $850 later (inspection was $250) we had 6 air samples done. I thought air sampling was not useful, but apparently it can help pinpoint a problem room/area. There was concern about our laundry room which has the water heater, washing/dryer, and heating unit all in one room. It seems we need to seal the duct work a lot better and anything else that is not sealed well, mostly the dryer and heater. He also recommended having a timer on the fan and running it on a regular basis along with opening the window as much as possible. The humidity gets above 60% sometimes when multiple machines are running in that room. Above 60% is not good. Also, outside heater intake and exhaust tubes are right next to each other. He said these should be at least 8 feet apart. Sampled the attic which he said should be sealed completely from the rest of house since air up there is not very clean (whether or not there is a mold problem). That means sealing lighting and plug-ins etc. that are on the floor underneath the attic. Also said that his fees/sampling costs are tax deductible if prescribed by doctor! Remediation costs as well. Will double check this with IRS rules but sounds good to me! Oh, Familyof5, just realized that heater air intake is on the floor almost right underneath the entry to our attic. Ummm...inspector said there could be some remnants of mold in the heating system (after having it cleaned) but did not take samples on it at all. Mar, glad you are finding your way through this mess! Keep us up-to-date on your progress if you can. Just taking it one day at a time... Thanks for your replies.

Received ERMI mold testing results back after a full year of cleaning/remodeling and very discouraged! The result is '8.28' versus before it was 13.71. This is in the top 25% for mold. We are either going to have to move - finding a low-ERMI score in our area will be next to impossible OR have a remediation guy coming out tomorrow. He was referred by doctor and does a full inspection ($425) for mold/EMF/Radio frequency/sleeping area etc. but at this time, we are just going to have him do some mold testing ($100 per sample plus his $50 fee). He mentioned doing the attic which we have wondered about. Apparently, if mold is high up there, they totally enclose the area so it cannot penetrate into the house (~$800). After going over the house with my dh to make sure I was ready for this guy, I realized almost every room in this house has had water damage at one time or another. Some of it is speculation from prior owners since they did not mention any of it. My dh has replaced almost every wall downstairs just in case there was mold! Here we go again!

We did TSH already and it was 2.8 I believe. Should we test further? DS is 14, testing CD57 on him should be reliable by this age, correct? I had mine run already and it was very low. C3a/C4a -- are these markers for inflammation? I really want to run a lab to help confirm that as i think inflammation is a big component for my son. On the TSH, just for reference purposes, my ds14 was 10.34 at the beginning of treatment and is now at 3.8. His doctor wants it to be below '1' before she stops treatment. He is also taking desmopressin to treat other hormones that must be in balance in order for thyroid to heal. My notes on the C3a say it is an indicator of lyme. On the C4a they say that it can be elevated in any infection. So if high there is still an infection present. It is also used as a 'mold indicator' by Dr. Shoemaker along with his other recommended test. TGF-b1 is an indicator for inflammation. My DH had the highest number the dr's office had ever seen recently (40,000). Doctor said this # can fluctuate quite a bit day-to-day but not that high. My ds was 9860 at the beginning of treatment, then 2000 in the middle, now 12,540 while treating viruses. My son had his CD57 done when he was 13 yrs. and it was really low (25). We may be retesting that again after 18 months of treatment. Inflammation seems to be a constant for most on this forum. Just our experiences and my notes from the last 18 months.

E-mailed you.

Testing for viruses, and thyroid along with associated hormones (TSH, T4, etc.), would be two that I would highly recommend just from experience. Along with the CD57, C3a, C4a, TGF-b1, lymphs, BUN (liver). These are in addition to lyme, co-infection testing. Hope this helps a bit.

I read of kids starting an abx and within days see a difference - that has never been us. I read a lot of things that have never been us. I suppose I have no other choice but to continue on. I hope your ds is doing well. This sounds eerily like our story. As you see below, ds has been diagnosed with several issues. He also had HLA testing done per Dr. Shoemaker and we found out he is not genetically likely to recoup with Abx alone because of his genetic makeup. Also, mold illness has been an issue for him (and now probably my dh). We just did another ERMI test to make sure our house is healthy enough to continue living in after cleaning and doing a bit of remodeling. Waiting for results any day. We were lucky enough to have found an ND who uses prescription/natureopathic/homeopathic protocols so abx has only been a small part of his treatment. Feel lucky we found this doctor before doing the genetic testing. Keep looking, you will find/treat everything eventually and will be so happy that you were persistent in getting the help you need.