JuliaFaith

We started with a 'PANDAS' MD for the first 6 months and treated with abx/steriods/nutrients. There was no improvement at all for my son. So, after some wonderful people on this forum suggested looking into lyme as a possibility, I decided to go to lyme dr. for just one visit before doing IVIG next. This was the best choice that was made for healing my son. We ended up with an ND (originally went to office because one dr. was a MD). Prior dr. told me to get the best dr. I could find and this was it and they were local. We lucked out and ended up in an office that treats the whole body with allopathic (Western)/naturopathic/homeopathic meds/muscle testing (and a few extras from Europe). They said my son 'had everything they treat' (except autism, I believe). It sounds like your ND is on the right track. After the first 3 months of testing/treating a few other things, she treated all of the issues at the same time. Dr. only used Alinia a few short time periods and mostly used naturopathic/homeopathic the rest of the time. Son has been on a probiotic of some kind and detoxing during the entire treatment. He is GF and organic foods only. A virus (HHV-6) has been more difficult to get rid of than the lyme/co-infections (we think it is no longer a problem now-off meds). It sounds like you have found another piece of the puzzle so you only have more healing as you move forward. Best wishes!

LLM - your story sounds similar to ours as well. Really enjoyed reading your post. Just wanted to add to Dedee's suggestion. We started out looking for an LLMD and inadvertently ended up with an ND (Naturopathic doctor) who treats the whole body and it was the best mistake we have ever made. This ND treats the whole body and uses every type of meds available (and some not available except in Europe). We have learned so much on this journey, a lot of it good. Best wishes on healing.

Lots of good info. here! The first thing our ND (natureopathic doctor) did for testing/treatment was parasites/worms treatment (have done 3 times so far), KPU & heavy metals (hair test covered by insurance) testing. She also uses ART testing. We then did blood work for hormones (TSH;T4F;T3Free), metabolic panel; CBC (blood cells, lymphs etc.), lyme (CD-57), viruses, inflammation(TGF-b1). Found lots of useful information in these tests to proceed with treatment. Best wishes!

So sorry about your daughter! Have heard of at least one homeopathic med for strep. FYI, we have really enjoyed our 'natureopathic Doctor (ND)' as she treats with all meds/supplements, including homeopathic/natureopathic/allopathic. I figure why not have the best of them all to help son get healthy.

Hey there, tried to PM you but your mailbox must be full! So sorry! Cleared some space.

My DH had the same symptoms and after 8 yrs. of it continuing to get worse, he finally saw my son's dr. recently. She did a CD57 test which showed '90' and her ideal is above '100' so she said he probably has lyme but that was not the biggest deal for him. It was high inflammation from continuing sinus/lung issues, hormone regulation (including thyroid), HHV-6 virus (same as son's). So while he may be getting treated for lyme, these other issues were just as bad or worse. He loves 'ProCalm' (probiotic/gaba mix) and so now both my son and dh on it. He is also taking B-12 injections (which he does himself) along with other meds/supplements/nutrient support. He says that the fog is slowly clearing and he is feeling better than he has for 8 yrs. He also had some other, rather painful treatments, which, if you really want to know about those just PM me. He looks so much better and people at his work have commented too. She said treatment for him would be 12-18 months. This is a ND that treats the whole body, not just one thing. I told him he is going to be like a 20 yrs. old when he is done and I will still be the same old age! Good luck!

Great questions! In my son's case, lyme was only one of many things going on so difficult to say for sure. He would get sick for 2 weeks with an illness, than be somewhat better for 1 week, then sick for 2 weeks, then somewhat better for 1 week, until he did not not get better (~6 months). He started with stomache aches one summer, then caught two flu's that fall/winter and then just came getting whatever illness was going around. It seems each illness just stayed in his body, at a different level, and never left completely. momcap - read recently on one of betterhealthguys.com conference notes that hormones can be a big factor in healing. My son is still on desmopressin and has been on adrenal/thyroid meds and possible others I do not remember.

After over 2 yrs. of treatment so far (and hopefully nearing the end), I have discovered a few things of which were very important in moving forward with healing. We tried 'allopathic - Western' medicine for 6 months (abx/steriods) with no improvements and were looking at doing IVIG treatments. Some wonderful forum members suggested that I look at 'lyme' as a possibility. I figured with IVIG being somewhat invasive it would not hurt to do 'one' visit to a lyme literate doctor. This brought us to a 'Natureopathic Doctor - uses all types of meds' and treats the whole body [first time ever going to one]. After one visit, we knew it was the right place (even tho we loved our PANDAS doctor!). It seemed that something had happened to my ds14 body to initiate the 'autoimmune disfunction called PANDAS.' So we had not only named what was going on, we needed to find out all the things that were making that happen. These doctors have systematically treated many things that were not working correctly in his body (several doctors had said 'he was fine') which included detoxing/prescription meds/nutrients/natureopathic meds/homeopathic meds/cutting edge medical discoveries to name a few. These kids (and adults) have many things going on in their bodies at once, which is why they are so ill. It takes a while to find all the pieces of the puzzle, but moving in the direction of the ND we see has made the process less painful (i.e., flare-ups) and, I feel, more complete for long-term health. This is just our experience. You are in a great place coming to this forum for answers and support and I wish you the best for healing.

It seems that going thru all that we have gone thru, enjoying the small (and large) moments more than ever, is actually a positive outcome of all of it. So happy for you!

Just happened to see your post and thought it would be easier for me to reply then for you to search on the forum. My ds14 did have a tic in his throat when treatment started 19 mos. ago but I thought it might have been from the 2 pneumonia's in his lungs. Not sure tho. It stopped pretty quickly after starting treatment with an ND (Natureopathic Doctor). He was put on Valtrex for a long time along with some anti-viral natureopathic meds. (from BioPure). After 14 mos. of treatment dr. said son had gotten rid of 'big bugs' (ie. lyme; pnue etc.) but not the small ones (viruses). So we had the choice to do injections of GcMaf (a new treatment at ~$900/2 months - no insurance coverage) or start on Valcyte. This is very expensive (~$3000/month) but insurance, after approval, paid for all but $150/month so we went in that direction. Dr. warned us that patients usually do not feel great on the med. but after they are done, they feel great. Now, after 5 months of treatment he was just taken off of it per muscle testing. Dr. said it would be 6-9 mos. of treatment originally, so we are very happy! Son was 'baseline' for first 2 months of taking it but after that had almost continuous flare-up until about 3 weeks before taken off of it when out-of-the-blue started feeling good, better than ever. This happened to coincide with removal of the last bit of mold in home (attic) so not sure if that was the final thing needed. Dr. usually follows up with blood testing to make sure so anticipating that coming up. My son is feeling better than any time in the last 2 1/2 yrs. (I know this because he actually has started saying it, whereas, before he never would). PM me if you have any add'l questions. Best wishes on continued healing!

Thx for your kind words. Heard about the Alinia thru another patient. It might just be in the US. I ordered it thru Canada since my insurance would only pay for 6 days and the non-generic cost was way too much. The one purchased in Canada was generic hence the much lower cost. My guess is that the original patent is running out so pharm co. cannot make as much $.

Did have a hard time thinking straight and went the opposite way was supposed to so pulled over and called emergency crew. They were great. You are a very strong person too going thru all you are experiencing! Thx for all you do!

The cause of the bike wreck? Music, 14 yr. old, big rock in the middle of the path are just a few ideas dh and I came up with. Interesting about the thyroid. He does remember flying off his bike. Still treating throid but tons better than start of treatment (believe it went from 10..to 3...last time he was blood tested). This is after 19 months of treatment Thank you for your kind words.

Duplicate.

Alinia induces parasitic larva die off in the brain and the die off reaction can cause seizures in some people as per my learning. Dr Kling sometimes will give a tiny dose of prednisone maybe 10 mg to a patient on Alinia kind of similar to what Dr Kovacevic does if needed if patient starts vomitting and cerebral reactions. I've seen similar reactions in my patients on Alinia but no seizures. Havent had to use Steroids yet. I start off with muscle testing the dosage and recently one 42 year old woman tested at 3 days on and 5 days off of Alinia 500 mgs BID and thats what we did and she's been fine. Previously she was doing the standard 500 BID daily and the brain fog was debilitating. Additionally I also recommend Galactose to help drain the ammonia from the brain. For my DS we did 5 days on and 10 days off at 250 mgs BID. plus for brain drainage we did galactose and glycine. Just some of my experiences. sptcmom--so glad you are on this forum to explain things better. Myself, coming from a non-medical background, I do my best but it is not too great. Interesting info. on the Alinia and brain drainage. Have heard that Alinia has many properties and can help quite a lot in different areas of healing. Have you heard that Alinia will no longer be available soon? It was several months ago when ds was on the Alinia for about 4 weeks, but had no apparent problems with it. Good info. to know about the seizures possible on Alinia. Love the exactness of the muscle testing! It is so amazing! Every dr. visit is such a learning experience and I am pleasantly shocked and in awe of the results! Best wishes for your ds and so glad you are helping heal others. After all we have been thru, I so admire people like you that take care of healing people as a daily job!

Just wanted to say that following your gut was probably the perfect thing to do. Good work! Our dr. always listens to our 'gut' feelings before doing her testing/evaluation because she believes it is very important in healing. 3boysmom makes some good points about testing to think about. My thinking in the face of IVIG was what could it hurt (and it cost less) to go to a LLMD? Just one visit. That one visit (and several afterwards) was 19 months ago and my son is at 95% or better. Reacts to illness like everyone else so far so keeping fingers crossed that will continue as well. Also, unbeknownst to me, mold was an issue in our house. So, sorry to give you so much to think about, but this seems to have tipped the scales positively on healing for my son (and dh). With an immune system not working properly (PANDAS/PANS), it is amazing what can work its' way into the body. Six months before my son got ill and never got better, he also had about 5 vaccinations. Best wishes on healing, it sounds like you are doing a great job thinking about all the puzzle pieces and moving in the right direction.

Thanks so much Mar for your note. He is doing fine. Cannot even see scratches on his face after 6 days and just got a small cast today. He saw his ND yesterday and got a bunch of injections on his head which were not pleasant but are supposed to help keep scar tissue to a minimum. This is one brave 14 yr. old! Helmet was possibly a life-saver! While at dr.'s asked to have his Valcyte (anti-viral) tested before refilling it again. He is done! This has been a long continuing battle so very happy the viruses seem to be under control now. Just working on throid/detox now. Thinking that dr. will do blood tests next time around to confirm everything. Hope treatment is progressing well for your family. Take care.

Hi Susan: I wish you had more direction from your dr. From our experience, I just trusted the doctor and then researched everything she had done when I got home. Still finding out stuff about ds prior treatment methods and why they worked. Does your dr. have a methodolgy that they are not sharing with you? It seems our dr. did not tell us everything for fear it would be too much to handle at once both mentally and physically. It has taken me 19 mos. to find out the majority of things he has been treated for and I presume some things I do not yet know. She has referred to my son as "having all the things they treat" a few times with fellow dr. in the room, which has made me a bit nervous. Now with that said, my son was on Viressence and Quintessence (BioPure), I believe, longer than any other treatment (except nebulizer for pnuemonias). These were listed under "microbials" (includes viruses). She always prescribed nutritional supplements, detox supplements, GI support, and any other support needed at the time (immune, kidney, adrenal, cardiovascular, anti-inflammatory to name a few). She described it like a table with 4 legs. If you leave out 1 of the legs the table falls (i.e. flare-ups etc.). All these 'natural' meds/supplements were so new to us originally, but I cannot believe how well they work! My son just took homeopathic meds. (little balls that are sweet) for injuries etc. and his face is practically healed in 5 days (he landed on it in a bike wreck where he was knocked out!). We just got 'Traumeel' for trama today (homeopathic) to sprinkle on his tongue every hour or so for the next week instead of taking ibu/tylenol which was showing stress in testing on his organs. PM me if you want to talk or you have any add'l questions, will give you my cell #. Oh, and wrote the following in PANDAS forum: "My ds14 goes to an ND and treatment for mico has been using a nebulizer with iodine and now liquid garlic every night. Will be on it the rest of treatment to get rid of mico and to keep lungs healthy. Lungs are tons better than beginning of treatment and has not had and any lung issues with colds etc."

Both my son and dh are on Procalm that contains GABA and probiotics together. They take 3 at night. My dh loves it because it makes him feel so much better. My ds14 goes to a ND and treatment for mico has been using a nebulizer with iodine and now liquid garlic every night. Will be on it the rest of treatment to get rid of mico and to keep lungs healthy. Lungs are tons better than beginning of treatment and has not had and any lung issues with colds etc.

My dh says cholestrol protects the brain from toxins according to son's dr. So maybe her toxin level is high? My son eats eggs several times a week. He is a couch potato when not feeling well which has been a lot in the last 3 months, however, in the last 3 weeks he has been feeling much better every day so has much more active. Putting supps in smoothies is a great idea! Chlorella is made from algae. It is a great de-toxer and has some "amazing"properties when mixed with salmon oil. There is powdered chlorella that could be put in a smoothie. PM me if you want the brand that tested well (and 1/2 the price of a few others that tested well).

well geesh, the ldl is "borderline high" according to your link, but that high HDL is great. Since HDL is factored into total cholesterol, it is driving that number up. If you look at his total cholesterol to HDL ratio 249/74 =3.77 ...that is pretty close to ideal. http://cholesterol.emedtv.com/cholesterol/cholesterol-hdl-ratio.html What is his diet like? how old is he? Does he take fish oil? Interesting article. Thanks for sharing. Son's diet is eat everything (now that his stomach feels good again) . He is GF and all organic. We have our own vege garden and buy into a local garden for veges. He loves the carrots when fresh out of the ground. He is 14 and takes 3 fish oil 3xday (along with chlorella) before each meal. My dh took this and had to stop because his cholestrol got too low so could be a contributing factor. We buy whole pig so eat a lot of organic fat. Big meat eaters in this family. He also loves anything sweet. He can go thru fruit like you would not believe. Have read articles on children and their need for sugar (hopefully healthy) in their diet. Cannot remember the details though.

How high we're they? I wasn't terribly concerned last year, but now at 288 with sky high LDL, I have to wonder what is going on! I wonder if that is the 'total #'? Do not know how to read all of this myself, except that the HDL is the good number and can offset the bad LDL a bit. Here are my son's numbers: HDL: 74 (ok) LDL: 151 (High) Triglycerides (fats carried in blood from food you eat): 121 (normal) Total: 249 (High) Here is an interesting article on it: http://www.webmd.com/cholesterol-management/guide/understanding-numbers

My son's chol has been on the high side all during treatment. Dr not concerned. Read somewhere the cholestrol helps protect brain and other things I cannot recall. Also, it seems you are on the right track with less carbs. When we went GF my dh's went down quickly which his dr. seemed surprised by. Less carbs had to be the answer (he had tried several yrs before reducing fats with no success ).