JuliaFaith

My son was having similar issues. His doctor suggested that we put a drop of hydrogen peroxide in each ear after a bath. This really helps. I know because I do it too. We have also had really good success with "Manuka Honey". I know it sounds funny but it works in the ears, nose, and throat. We make a 4 oz. jar of distilled water and add about a tsp. of the honey for ears and nose. I also add 1/2 tsp. to cooled tea (don't want to fry all that good stuff in it) during colds and coughs. Have a note to buy 35+ next time. There are different numbers on the jars. Our 8.75 oz. jar was about $35 but is lasting a long time and we use it frequently. It seems like the www.goodhealthguy.com is where I first learned about it.

This looks really interesting. Thank you for sharing. :-) Hope to see it on Monday.

You make some goods points Hopeny. It could be that a 'mold' component of neurotoxins was a big player in my son's PANS (in addition to vaccinations/genetics etc.). To me the lyme and coinfections are always there but the immune system has to be able to keep them deactivated, just like viruses, which is the difficult part. This is why our focus has been on supporting the immune system and now trying to train it to work well again.

We where looking at IVIG when I decided it was time to look at lyme first. In my son's case, I was glad we did not do IVIG. My son's immune system would have picked up anything that the IVIG would have had to offer in terms of bacteria and viruses etc (which our doctor confirmed). He was also initially not a responder to abx or steriods. With that said, we are using a blood product now that has been carefully cleansed per the company that makes it. So we do have a chance that something else could be contracted but now he has been through 3 years of treatment and building up the immune system so we are hopeful that he could handle it now. Also, it seems, in extreme cases, IVIG's have been really helpful to get a child to a better place so that they are able to handle other treatment. I always go with my gut when looking at all choices and it has paid off very well for my son.

We started out seeing an integrative MD who we still see for some things. Now my ds sees a doctor who follows Dr. Klinghardt and have treated for parasites around 4 times now and we continue to detox heavy metals still. After parasite treatment the first time (about 2 mos. treatment) there was an immediate improvement in ds anger issues. My son has progressively improved with treatment. He is testing pretty healthy. My son has an immune issue (PANS) so even if he is testing healthy one month, he sometimes needs support the next. Albeit, son's treatment is a bit unusual compared to most on this forum. We have systematically treated parasites/worms (worms only once); bacteria; viruses; and mold. We have addressed methylation and biofilm. We have used allopathic meds (prescription-i.e. abx), natureopathic, and homeopathic. Abx use has been 3 months here and there but not the entire time. Klinghardt treatment is out-of-the-box but he treats aggressively for those with chronic health issues and has great success doing it (as other doctors do as well). Follow your gut and you will choose the best path for your son. Best wishes on healing.

Hello--At last visit to Doctor, she said that ds was showing a little bit of Babesia/mico (with muscle testing) and put son on 100 Mg Minocycline 2xday plus a homepathic abx called Cryptolepis (10 drops/day). Now 3 weeks later he picked up a cough and when I heard it getting stronger, I switched to 500 mg mino 2xday and e-mailed doctor. Coughs used to be the started of a PANS episode but not sure if that is still true but with what doc. said 3 weeks ago figured mico. could be part of it so started stronger treatment. Funny thing is, the doctor (who I now see) also said 'my Babesia' was showing up a little even though I was symptom free. She put me on a homeopathic abx called C.S.A. Formula. She directed me to slowly increase. When I first started it gave me the worst headache so I backed off on dosage which got rid of headache. Still do not have any symptoms but will probably be taking this for a while. Was surprised at how strong a homepathic med could be! She said since I was reacting then my body needed it. My son did not seem to react to his homepathic abx. Now we are both on 'maintenance levels' of our homepathic abx. No increasing for now. So maybe all you need now are the supplements and maybe try a homepathic abx.? Something slow so you do not rock the boat? See what your doctor thinks.

We live in the Seattle area and will PM you some doctors we are still seeing.

Great that you had this done for long-term health. Hopefully he feels better every day! Lots of fluids and liquid soups for protein and minerals. Smoothies were son's fav. Lots of liquids so there is no excessive bleeding. Took my son 2 weeks and it was pretty much over. Those 2 weeks he was sore and uncomfortable. Fell asleep in the window sill with head on hand looking out right after surgery. Did lots of movies too. Keep healing!!

Ooops...double post.

Inexpensive anti-parasite: Boil a few cups water, after done boiling add handful of chopped cilantro and let seep about 10 min. After it has cooled down, add a spoonful of organic miso. Quite tasty. Drink daily per Dr. K.

Wow, some great info. on this thread. Hate to say it, but we have been thru all of it. :/ One thing that struck me was the conversation about hair test. My ds first hair test, 3 years ago, his heavy metals showed somewhat high. After 3 months of detoxing, his levels had gone up substantially and I was really concerned. The doctor told us that was what she was looking for because it showed that ds was getting rid of them! I was surprised! This was before all the methalation testing so it was a good indicator that he was detoxing heavy metals properly. We also did nagalese testing and found his higher than the norm by quite a lot. We are currently doing Gcmaf injections to get it down which it has. We are hoping that this treatment will train immune system and it is lowering viral numbers for the first time in 3 years. It is supposed to last for your lifetime once finished. Ds will be done when this vial is empty. Oh...one last thought. Parasite/worm treatment done 3 years ago helped a ton in terms of anger...oppositional behavior etc.

http://www.youtube.com/watch?v=L_sVBLNyMng If this does not get you to the presentation, can just go to youtube.com and type in "Autonomic Response TEsting" and look for Sept. 15 presentation. The last 10 min. or so really get into the how/whys of the testing. This presentation was given by Dr. K (MD) on Sept. 15. It has a lot of interesting information in it no matter if you are interested in looking at an out-of-the-box treatment/diagnosis approach or not. Do not believe he mentions in the video, but I believe he does blood work to confirm all the diagnosis as well. The very end also has some really interesting info. when questions are asked. My son has been seeing a doctor in his office for 3 years now and I learned more about how/why they take the approach that they do. My husband and I also started going to the same doctor this year and are very pleased with diagnosis/treatment (even if some of it hurts! i.e., injections). It seems that you can never have enough information in which to treat the chronically ill. Best wishes on healing!

Sorry, do not know about the doctor visit info. Glad to hear you had tonsils removed. They were described as a "bottleneck for bacteria, viruses etc." so you are moving in a positive direction for healing! When my son had his tonsils removed, the doctor recommended the following for sore throat (not sure if you can take any of these): Slippery Elm lozenges Throat Coat Tea Homeopathic Mercurius 30 C: 3-4 pellets up to every hour while awake for pain. DO NOT USE this if you have amalgam fillings! "Broths, smoothies, protein drinks as tolerated. Well cooked and pureed soups and stews can be a good way to get minerals and healing nutrients including electrolytes and protein to keep your energy up as you recover." Best wishes with Dr. Najjar! Take care.

So great to hear this!!! Thank you for posting! Have started to believe that this is an under-utilized area for long-term health care in our country. =)

So good to hear your news!! Take care!

Wow that is terrific!

Forgot to mention that Dr gave us some leeway on artemisin dosing. Samento is pretty strong too. Sorry if typing bad but on phone and self-correct keeps changing words!

Artemisin was really tough for my Ds the first year. He started out at a low dosage too. It is an anti-malaria herb. The Mimosa Pudica is an anti-parasite. Taking all this at once will cause massive die-off so hopefully you have a good detox system in place. We started out treatment with probiotics and nutritional support while doing just anti-parasite/worm treatment for first month or two, did KPU test, then started adding in the 'anti-bacterials' and anti-virals. We also drank rock rose tea for the first year at least to kill biofilms. At the first visit, the Dr said we had to do everything she requested as the treatment was like a table with 4 legs. If you removed one there could be major difficulties. Best wishes on continued healing!

WWW.bad bugs.org/blastocystis

Viruses were tough to get deactivated for my son. He was on several supplements and prescriptions with no abatement. Valtrex and Valcyte were the last 2 that we tried. Valcyte stopped viruses from replicating and my cost with insurance paying for most of it was $175/month. Last summer when he was done after 4 months of treatment son felt better than he had in 3 yrs. He had a PANS relapse and felt bad again. Now this year, he was on Valcyte for 6 months, and we started gcmaf about 4 months in. He is still doing GCMAF but off Valcyte and feeling better. Will be interesting to see next blood tests. Valtrex did not seem to do anything for him, even after treatment for parasites and bacteria. But it was a good starting point along with supplements and homeopathic tinctures.

Hello-Sorry you for what you are going thru but glad you have some good dr. and forum support. My ds15 presentation was similar but treatment has been a bit (ok maybe a lot) different than most on here as we have gone the natureopathic route (abx, supplements, homeopathic tinctures etc.) which was the best for us as we had a mold toxin component that had to be dealt with as well. Our dr. treats the whole body not just any one infection. Two things that my ds has been on since day 1 have been a probiotic (one without strep in it-for stomache support-1 hr. after/before abx), detox-getting rid of heavy metals, herbicides, insecticides etc. ( chia seeds [easiest to start], chlorella [hard to digest]; milk thistle; charcoal; clay; etc.), and gluten-free [reduce inflammation]. Any supplements are very high quality in order to keep heavy metals and insecticide etc. away from child. These are all very easy to begin right away and have been extremely helpful in my son's treatment. Also, for how you are feeling right now--can totally relate. It seemed at first when all this happened I went thru the same feelings as if my son had died, which was horrible, but now 3 yrs. later, I can see how it has made him a stronger and better person and am greatful for that. This illness has changed our whole family and it has been difficult, but it has changed all of us for the better. Best wishes on your healing journey!

My son was put on desmopressin (prescription) for this today along with the D-Mannose. He had been on this earlier in his treatment so interesting. Is testing very good on everything else.

Could it be 'Group B Strep'? Just saw this recently and wondered if it would show up as 'strep-positive' on test.

D-mannose, a supplement at vitamin store works amazingly well for my Ds. Has stopped quickly on this but will still continue supplement until seeing Dr. next week. Last time this happened did a urine test and found a bacteria so did abx and D-mannose.