JuliaFaith

We have also been on a similar journey in the last 2 yrs. (son has been ill for 2+ yrs.). If you look at my threads (prior posts) you can get an idea of what we have been thru with mold/lyme/PANS. The majority of his treatment (at least for the last 2 yrs. with ND) has been with natureopathic & homeopathic meds. He has done some bouts of abx but not more than a few months worth. Ds CD57 was 24 when we started treatment 2 yrs. ago and it is now 48 so seeing some improvement there. After final remediation (we hope!) in our house and anti-viral meds. this last summer my son started feeling better after over 2 yrs. of flu-like symptoms and initial PANS flair. At first I thought it was because remediation was just finished before that but now not sure. In hindsight, he started feeling worse at the end of that 6 weeks but we do not know if it was from a PANS flair (after several jolts to his body-yes literally) or virus coming back in full force. He is now back to those flu-like symptoms unfortunately but not testing for mold so we are still on a healing journey. It seems that with PANS, just getting the immune system working properly is the main thing we want to accomplish (along with treating and getting rid of as much other illnesses as possible). Since that has not worked yet, ds seems to have other things that keep popping up (parasites/viruses etc.). So we are still working on trying to get immune system to work, while trying to treat and deactivate other illnesses that keep popping up. He is also on a maintenance protocol for parasites/anti-bacterial/anti-viral that, apparently is doing as much as possible. We are seriously considering and waiting to start the GcMAF since the viruses have not subsided with quite a few med. approaches. Mold is a serious thing for anyone's health, so good that you are addressing it now. Let me know if there is anything else you would like to know. I am a little slow on posting these days while trying to be a teacher and all the rest to family.

We have also gone down this path before. My son has the 15-6-51 combo which means that he would not recover from lyme on abx use alone. He seems to be doing well keeping the lyme away after a few years of natureopathic; homeopathic; and allopathic (some abx) treatment. His biggest problem now are viruses. We have also done a few ERMI's on our home and have remediated as much as we can. Surprisingly, the last remediation was the attic. After remodeling entire house, it was the only thing we had not thought about. Apparently, 30% of home air is from the attic and we had some mold up there. Sealed off attic to inside of house and had new insulation put in (new roof added last year). Son did muscle test for mold again after all of this but it was during a time when we found a shower leak in our newly remodeled bathroom. We are hoping there is no more! Our dr. tried Dr. S's protocol in a round-about-way. She kind of said, everyone has HLA's but that does not mean that you will have problems so it is more of a tool in looking at several things. We tried VIP with no success, but it was before remediation was completely done. Probably best to follow Dr. S's protocol as I think we wasted some money on treatment because it was not done in the right order. My son is still taking chlorella & Fermented Code Liver Oil (was Salmon oil before latest flair) for detoxing. Never did the cholestryamine for him. My husband was on the cholesyramine for a while (after taking chlorella/salmon oil for a year on his own) but had to stop because his cholestrol levels became too low. DH is now doing thyroid meds. and dealing with sinus/chest issues but not detoxing. He is also, hopefully getting tonsils out soon because of all of this as well. Good that you found this out now as mold can create some huge health problems in even totally healthy people. Best wishes on treatment!

While waiting for test results from ND, went back to PANDAS dr. to see if she had any ideas since last big flair. Just got blood work back from both doctors today after latest flair and am so disappointed. HHV6 is HIGH (already done Valtrex and Valcyte) EBV is HIGH (it has shown as prior infection in the past but not active) Both of these viruses are activated. Son was 1 week into virus when bloodwork done. Would that have contributed to these at all? Vit. D is low again so cannot do GcMAF yet. Thyroid is all over the place: Sept. 5.55/Oct. 2.9/Nov. 3.74 (did increase meds after Sept. so not sure why it is going up/down) Did get a little good news tho about MTHFR being negative and mico p testing as negative. Also, starting neurofeedback in a few weeks which is supposed to help, over time, with a lot of residual PANS things (depression, thinking, sleeping etc.). Dr. said it works slowly, so that the further you get in treatment the better you feel. He will be doing this once a week. Have read that it takes about 18-20 visits for full treatment. Any ideas on these would be greatly appreciated. You all are great!

Ditto on mdmom's post (my son will also be 15 yr. soon ). Thank you for sharing your story. Had my son read it and he had a smile on his face when he was done. He now wants me to let him read any stories like yours. After 2+ yrs. of treatment he has had 6 weeks of 'starting to feel better' this last summer. We are now back to before and looking for more answers. Best wishes on continued success with healing for your son.

I tried it with my son for 2 weeks but it really bothered his stomach which was still not great from last flair. He had a difficult time digesting it so supplemented heavily with digestive aids. Then, he started getting diahrea so stopped (not sure if it as the camel milk that did it). I tried 1 tsp. (and cannot drink cows milk) and my stomach had a fit! On the flip side, I have heard from another mom that it has worked wonders for her sons. So probably worth a try for the low cost. Our dr. also said to try it.

Hello again Fixit-just left you a message on PANS site now am here again. Sorry. With the thyroid tests: TSH/T4F/T3Free; the dr. is looking for all of these to be below '1'. TSH was creeping up again recently so I increased dosage a bit and at last visit, dr. said that is exactly what she would have done. We are also on GF diet. FYI - You are an amazing mom!

Wow! Did you figure all this out on your own? Very impressive! My son has been and is on a similar road. He has been thru at least 3 parasite protocols in the last 2 yrs. of treatment. It seems every time son starts biting nails, dr. puts him on another parasite treatment. The end of son's last parasite treatment ended with 4 weeks on Alinia last month. Whenever my son is on abx (not Alinia) she always puts him on 'Matrix Minerals' from bioPure which sounds similar to your approach. This last time (at current flair) she had him sip the following every day (still on it): 1 cup water Matrix Electrolytes Matrix Minerals M-water UNDA 243 (I think this is for cholestrol...) Galactose powder (methylation help) In the past she just had him take the minerals in water. After 1 1/2 yrs. of trying Valtrex/Artemisinin etc. for HHV-6 virus with no improvement showing on blood work, I decided to try Valcyte (stops virus from replicating). Son was on it for about 5 months and then tested that he did not need it any more. He was taken off of it immediately. Had 6 weeks of 'starting to feel better' for the first time in 2 yrs (from flu-like symptoms). He then caught a chest infection and sent him into a PANS flair and has felt like he did before the Valcyte once again for the past 3 months. I wondered if the flair had not happened if he would have continued to feel better, but he just told me today that before the flair he had started to feel worse but did not want it to be true so did not say anything. Your son may have a different experience, for sure, and I was not sure if you would want to know all this but it seems better to know than not. We are waiting for HHV-6 results back any day and Vit. D to see if son is ready to start GcMAF injections as I believe this is his only option (besides IVIG). His current protocol is similar to your sons right now too: Chlorella/Fermented Cod Liver Oil (good for digestion) Thyroid meds for Hypothyroidism (130 mg a day) MILA, vit. A, Vit. D, brazil nuts (selenium) Ketotifen (gut repair from flair) Probiotics Liposomal for maintenance: grapefruit juice Lipo-Health (autoimmune/methylation) Artemsinin (400 mg)(anti-viral; anti-bacterial etc.) Mimosa Pudica (anti-parasite) Curcusyn (anti-inflammatory - open capsules and add) TGF-beta 1 still high (s/b 2,000 but son's is 4,500) so trying to get reduced before GcMAF injections. He drinks 1/2 before breakfast and 1/2 before dinner. Best wishes on continued improvements! Thank you for the great articles! P.S. Forgot to mention that he also does a nebulizer with iodine/garlic every night before bed so I found your iodine comment interesting as well.

My ds has been thru at least 3 parasite procols in 2 years. Currently, for maintenance, he is taking Mimosa (biopure) 1/4 tsp. day. His immune system apparently has had a difficult time keeping these at bay, hence the maintenance dosage. For someone without a problem keeping them at bay, a dr. recommended a 3 month treatment with different dosing.

Thanks Kathy N. So far he just feels worse but I think diarrhea has stopped. Your very sweet. Best wishes for healing.

Thanks for the info. Kathy. My son is on it for 14 days and then on Vancomycin for another 14 days. Insurance surprisingly covered both but the Vancomycin will be over $100 for my portion so must be really expensive too. At the beginning of all of this (2+ yrs. ago) son had an endoscopy that showed an inflamed small intestine. That was it. So the Xifaxin may be helpful. Dr. has him on a mineral drink while he is on these.

Thank you SF mom, your so sweet. Will definitely look into it! Take care.

The fermented foods are supposed to be really good for digestion per a book I read. Interestingly enough, dr. just switched from salmon oil to fermented cod liver oil(Green Pasture). Has Omega 3, 6, 7, & 9.

My son is on his second run with this. The dosage was 4xday. Start slowly with one before a meal and go up over several days. Took about 2weeks to level out. It caused son to be moody because he was sleepy. Found this out the hard way when he had to be off several days because pharmacy closed. I immediately started him on high dose again after 3-4 days off and it was not a pretty picture so backed off and started more slowly which worked much better! Now he takes one before every meal and at bedtime. Pharmacist said we could work up to 8 a day but have not tried that yet.

This sounds oddly like a GcMAF discussion I was part of. Dr. said if nagalese #'s are high it is like ur WBC are your body watch dogs. Nagalese comes in and feeds them steak and they fall asleep. They still show up fine in bloodwork but are not actively doing what they should be doing.

From our ND (Natureopathic doctor) perspective when I asked her about IVIG: She pointed to the people in her clinic doing IV treatments and said a lot of them have had blood products that brought other things along with it that has made them very ill. We still like to think that it is still a possibility if we need it in the future. So glad IVIG has worked for some, but our dr. said it usually brings short-term relief. We are now looking at GcMAF, another blood product, but highly sanitized, to see if it might be an answer since my son has been sick over 2 yrs. now. His symptoms have been flu-like, with some OCD thrown in. He had about 6 weeks of 'starting to feel better' after doing heavy duty antivirals. But now after PANS flair the viral problem may be back. Will know soon from blood work. Our Dr. also says that Mothers seem to have good gut feelings about things and she listens very carefully as I go thru the various things that I read on this forum and that I am thinking about. It usually costs more for the visit but it is also helpful and probably steers the treatment a bit. Hopefully for the better! So long story short, you probably did the right thing! Best wishes on finding answers and healing!

Just for you Michael. This was a direct quote from someone affiliated with First GcMAF company: "Some nagalase is derived from bacteria. It is thought that some gut bacteria create nagalase. Bear in mind that nagalase is simply a defence mechanism for invaders - this enzyme is efficient at compromising the immune system by preventing the production of GcMAF in the liver, by simply stripping one part of the molecular chain of the Gc protein. It is an easy and efficient way to make sure the macrophages are not activated and the invaders are not destroyed by the immune system. Lyme is helped by GcMAF and is in part a bacterial infection" Son is going to start on 14 day prescrip. of Xifaxan so maybe we should get nagalese tested again afterwards? Dr. then wants him to take Vancomycin (since insurance covers most of it). These both go after gut bacteria and could possibly lower nagalese...do you think?

Have heard that warts are viral. Have you had viral blood panels done on him?

So glad you found out about this! Nasal abx-resistant staph (MaRCONS) is also something to look for and is fairly common. A deep nasal swab (ouch!) can test for this.

Good point. Son is mostly on the GAP diet already. We have done 'hair testing' to ascertain vitamin absorbtion and seen much improvement in the past. Most of son's vitamins right now are D3/D/chlorella/Fermented cod liver oil/MILA. Trying to make sure Vit. D is up for GcMAF injections in the near future. We are working hard on getting the gut in a better place (since last flair) before doing the GcMAF as the injections can increase gut inflammation. Off to pick up veges. from a local farm.

Just realized every time son has been on abx dr. has put him on minerals. This time around we are putting the following in 1cup of filtered water: Matrix electrolytes 1 tbl Micro minerals- 2 tbl M-water- 1capful Unda 243 - 15 drops Galactose- 2 tsp. (helps with methylation) He is supposed to sip thruout day.

Good info. In this thread. What gut issues are we looking at is a good question. Son has nausea off and on (day by day) for over 2 yrs; stomache pain after eating now after latest flair (same thing with initial flair); yeast issues in private area that has been treated in various ways for months now and is still ongoing. When he first got sick an endoscopy was done and all they found was inflammation in small intestine. The mentioned abx will be 2 weeks each. Dr. was also curious that dh has been traveling and one of the abx treats'travelers diarhea'. Also wondered about our well water since the company has had a few findings of bacteria that could be bad for immune compromised individuals. Son is taking ketotifen which is suppose to help heal the gut but have never had much improvement if any on it. Thanks for all the great ideas. Sorry took so long to get back on.

Great to hear the homeoK is working for you! This is interesting on several levels. My son tested 'no' for homeoK MAF that he had been taking before and after starting on Valcyte. Would be interesting to test for this again now that he is off Valcyte. Also interesting what you said about adrenals/thyroid. My husband started treatment for thyroid and other inflammation issues about 8 months ago. His nagalese was 2.7 and inflammation was 40,000! Pretty high numbers. He did some treatment for 6-8 months (still doing thyroid)/sinus infection and had his nagalese & inflammation checked again. His nagalese was 2.0 and inflammation 8500. His dr. (same as son's) had never seen nagalese go down that much without GcMAF. Had another discussion on the GcMAF Facebook page about bacteria increasing nagalese. Have you joined that page? Anyway, thanks for the input, still hoping for continued healing for you. Take care.

You have good questions but I do not know the answers. I did read about using the Claritin for inflammation issues when doing the GcMAF injections which we are hoping son can start soon. Maybe someone else on here will have some ideas.

Son is still having gut issues 10 weeks after flair. One thing we heard to try is Claritin or Claritin 'D'. Some people have one work and not the other. Maybe this has already been mentioned here. We are trying it starting tonight! Will start with Claritin first because have heard the Claritin D can cause hyperactivity. The others are prescriptions of which have not heard of before: Xifaxan (see if insurance will cover) Vancomycin (2nd choice if insurance will not cover the other one) Anyone tried these before for the gut?

We just got a great story from dr. on describing how the nagalese works in your body. My son's WBC/RBC etc. tests look great. Think of your WBC as dogs protecting your body. If your nagalese #'s are too high (differs depending on practitioner) it is like they are throwing your dogs steaks and putting them to sleep. So while the nagalese is protecting all the viruses/bacteria etc. the WBC are not working as they should be. The GcMAF (there is already some in everyone's body) helps destroy the nagalese; viruses; bacteria; & toxins. We have to get blood drawn again, apparently Vit. D have to be normal before starting GcMAF treatment. Our recent tests for some reason did not have it.