JuliaFaith

Great article!!! Thank you for posting. Totally describes our journey with mainstream medicine and my aggressively seeking other answers (as some of you may know). We just ran out of salmon oil, and doctor said it was ok to use Nordic Naturals Salmon Oil or Prenatal DHA. Have not really discussed with ds that he is taking prenatal DHA right now (already had it) for good reason.

Several years ago an acquaintance had difficulties with out school on help for her son. She went to an attorney who knew the terminology to use in meetings and had great success with it. At first the school district did not want to help at all. Not much funding in this arena so you have to be aggressive in getting anything (in our state anyway).

joybop--ya, really weird huh? We are probably one of the 'more outside the box' people on here. His flair was at the end of GCMAF treatment which can cause inflammation. This along with his normal trigger (cough) caused a med. flair. He was over the cough in a few weeks but has some residual OCD (that happened to be around during GCMAF too). It has been only 2 months, and usually it takes 3 months (or up to a year for large flair) for all his symptoms to disappear (we hope since his baseline has improved substantially since GCMAF treatment). Have read that it takes this long to heal brain.

We left 'adenoid removal' up to the surgeon per our doctor. She did remove them. Our improvement is/will be long-term. Some saw improvement right away, but for us it was just another step in getting/keeping son healthy. As you know, not everything we do is immediately obvious but can have long-term positive effects.

A couple of visits ago to doctor (not our usual), my ds's tonsil area (they were removed) where muscle-testing as an area of concern. My son was having a small flair at the time that I suspected as PANS. She confirmed the PANS flair and prescribed abx (which I had already started) along with supplemental support for the cough which has always been a red flag for flair. Told doctor son had never had strep and she said PANS can still test where tonsils have been removed. That is why I found this information interesting.

Joybop--these are just bullet notes taken at a conference. If you go to the site you will see several notes on different doctors that are presenting. So this was taken out of context and is just a quick note on what was presented at one moment during the conference, second hand. Sorry if it was confusing.

"The tonsils are the beginning of the GALT (Gut-associated lymphoid tissue) which is 80% of the immune system. The tonsils program the entire system. Some may have had their tonsils removed but can still have problems. Microbes live in the tonsils and tell the lymph that the bugs are not a threat. You then end up with cross-reactions like PANDAS (now PANS) or in adults joint and cardiac Lyme. The immune reactions go away when you deal with the tonsil issue. Sinus, nose, tonsils are all the same tissue and must all be considered." - See more at: http://www.betterhealthguy.com/physician-s-round-table-2012

We also have been seeing an ND for 3+ years that uses ART testing every visit (the lead doctor is an MD). Our whole family goes to this office now because, I figure, where else can you get your whole body checked in one visit. We have also seen blood work come back perfectly aligned with the ART testing so that has also verified the ability of the doctor. Insurance pays for about 40% of visits which are not too costly. The supplements are the most expensive part of the treatment but are much less than IVIG. Our doctor is on the West Coast so may not be convenient for you.

"Lyme spirochetes utilize vitamin D3 to stimulate their own growth. It helps the spirochetes to multiply much faster." - See more at: http://www.betterhealthguy.com/klinghardt-conference-lyme-and-other-chronic-infections#sthash.QAS2rDU3.dpuf

WWW.bolenreport.com The right column has all the articles pertaining to DD. They are suing the "quackster" (sp?) site.

http://www.bolenreport.com/feature_articles/Doctor's-Data-v-Barrett/Doctor's-Data-v-barrett.htm

Happy holidays Dut to you and your family! Best wishes for everyone's new year of healing!

One simply thing that has helped me personally with detoxing and feeling better is Chia seeds. I know, it sounds hard to believe but it is a great detoxer. All of them, except MILA, are not ground, so had to grind them for my son because the whole ones where not testing well. MILA is $60/pd. whereas, whole Chia seeds are much less. Personally, I feel much less 'old' (even though I am ) taking chia and it is a great natural detoxer. We do 1 Tablespoon a day in water/juice/smoothie. We are all so toxic from the environment, this will help lighten that load so that the body can focus on healing. It seems every little bit helps when treating a chronic illness. My son's babesia/mico just started showing up again during muscle testing after not showing up for over a year (he was taking cryptolepis like 'rowingmom' because he was 'muscle testing' for them before he actually caught the cough). Coincided with a medium PANS flair after a cough. So supporting the body and immune system as much as possible has been a one of the main focuses (as well as anti-bacterials/anti-virals etc.) of our journey for the past 3 years so we can, hopefully, keep things de-activated so son can be symptom-free and healthy (fingers crossed). Personally, I appear to be the healthy one in the family, and I am also muscle testing for babesia (DH too!). I am asymptomatic but still on herbals to keep it from becoming a problem. Not sure how long it will take? Not sure if son is reacting to us... We are all HIGH in the HHV-7 virus as well. So not sure how much this affects son with PANS? So many questions, but few answers! RA runs in my DH's family as well. Seems like a good LLMD is your best bet. One visit could be all you need to get started on being healthier (happened to son). I wonder if the joint pain is from lyme and that you do not have RA?? Lots have been diagnosed with RA only to find out they have activated lyme. So many questions--hope you get some answers soon! Sorry to rattle on so much!

The TGF-b1 is an inflammatory marker, which our ND does not worry about if under 10,000 (at least in our family). It can change from day-to-day. Also agree with mama2alex that mold issues (which your son is susceptible) can cause as many issues as lyme.

http://chronimed.over-blog.com/article-lyme-disease-a-look-beyond-antibiotics-dietrich-k-klinghardt-md-phd-67183654.html Not sure how long it will be available. I am printing it out for future reference. The "References" at the end are also very interesting. Thought it might start a provoking discussion with you experts out there. It provides a 'checklist' if you will, of steps that this doctor takes for treatment of lyme and other chronic health issues. Have never heard of the 'KMT 22 TENS' unit that he talks about. Following is one item mentioned that may be of interest to those of you with strep issues. "C. Next we attend to the chronic strep infections, which often coexist with the herpes viruses. No other treatment has been as successful as Pleo Not (penicillum notatum) from Pleomorphic-Sanum followed by a 6 month course of Pleo Sancom (antidotes for aspergillus niger and mucor racemosus)."

sf_mom-- We ended up doing ds injections at night because they made him so sleeping and moody. It is supposed to help if they get physical exercise afterwards but it just did not work for us. The moodiness usually came 2 days later which was strange. I wonder if the 2xweek injections might have been better for your friends' son, but soooo good to hear he is showing improvement! Wonder if he has had his CD57 looked at? Thank you for the update. :] Once every so often my son said he felt like his had a 'cold' for about a week and then would feel better. Could not tell from looking at him that he had one. I believe it was his immune system battling some of those two activated viruses that have been hanging around for a few years, one of which has decreased on blood work since he started the treatment. Will be interesting to see what the next year brings.

Been posting experiences with GcMAF. My son got a 'cough' which signals a PANS flair. Last time he took 2 weeks of abx with cough and had his tic show up after the cough was gone (about a year ago). This time, he took 2 weeks abx, and stopped, then 9 days later after taking Gcmaf injection, his tic and PANS flaired. Not major but not minor. I stopped gcmaf after that and had dr. appointment soon after. Doctor recommended stopping Gcmaf for now and picking it up again later. I reminded her that his nagalese was .87 two months ago and she said to just stop it completely. My DH is taking the rest of the injections (about 1 months worth since his nagalese is a bit high). Over a week and a half his PANS symptoms are slowing down and he is on Augmentin for 28 days. The unbelievable part is that he has been swimming at least 3 times a week during the flair! He has never been able to exercise during a flair before. His main symptoms have been OCD, some anxiety the first 2 days, and tic in his throat. Just having things change, is really good to see. Oh, and his other MD is now doing nagalese test for herself/husband/some patients to see if more healing can come from it. Keep healing!!!!! This should be the 'forum' montra! :-]

Love this thread and so timely too!! Thank you. :]

So glad to hear of both of your successes!! It is so much easier to go through treatment (even during the most difficult parts) when you have trustworthy doctors to help you through every step of the way! This is HUGE!! Ophelia--when I heard of your trip and changes, the first thing that came to mind was that "things happen for a reason" and what our medical office believes that "coincidences also happen for a reason." They may be on to something! Best healing wishes and heartfelt good healing thoughts are coming your way!!!!

Such good news, hopefully his healing continues and you can enjoy more "normal" time. Know exactly where you are coming from.

Here is an older thread about it: http://www.latitudes.org/forums/index.php?showtopic=16806&hl=kpu#entry134762 KPU was tested along with H.Pyloria.

SF Mom-- Thank you for the nebulizer idea! Will try it! Will be really interested to hear how the ozone helped with your viral and mico. numbers look. My son's nagalese was 1.3 at the beginning of the gcmaf as well. Doctor was really impressed with how quickly his went down considering his low dosage. She attributed it to all the work done before hand. She also said that viral numbers may always be there, they just want to make sure they are not too high. I need to clarify what 'high' means in her mind because she seems to have different ideas about blood work results than the labs. Curious about the ozone treatments. What exactly are they? My husband had some ozone injected into his sinuses for long-time issues and it helped a lot even though it was not his favorite treatment. It was done to replace abx as they did not really work for him any more. They also used procaine in some areas. The injections are amazingly effective. Sugar water injections were used on the top of my shoulders because they were bothering me, but they only used sugar water. After 2 treatments, if I get shoulder pain it is under the areas where those injections were done not in the injection areas. May have to have more done in the future. Apparently, a doctor in maybe New Zealand discovered using sugar water and its' effectiveness. Not sure how that happened. :-0 Son has never been interested in the injection side of things and only agreed to have the 'head of thorns' when he had a concussion. There have been times when the doctor would have loved to do more injections on him. Take care.

My son is on Kavinase right now and has been for a few months now, NeuroScience brand. Here is a link to some reviews on that brand. I did read that you want 'Pharma grade.' He falls asleep in 2 min. and does seem a bit more relaxed during the day after he started taking it. http://www.iherb.com/product-reviews/NeuroScience-Inc-Kavinace-Serotonin-Gaba-60-Capsules/38717/?p=1 Thanks for the info. on the show! Will definitely have to watch.

For those of you interested in the gcmaf, here is a copy of the letter I sent to www.gcmaf.eu for an update on my son's treatment. It is a requirement for treatment which adds to their studies. It is my belief that the healing will continue even when we are done with the treatment as it is supposed to last your lifetime [not sure if that is true for all diagnosis]: My son (15 yrs.) started on gcmaf over 6 months ago now. He had already been through 3 years of treatment prior to starting gcmaf and is still taking some supplements (detox, fish oil, thyroid meds, desmopressin, recently minocycine as well). My first goal for trying gcmaf was to reduce high viral numbers (that had not gone down over 3 yrs. of prescriptions/supplements/homeopathic tinctures). Valcyte was the last prescription tried in which he had 6 weeks of 'feeling better' for the first time in 3 years and then went back to 'before' baseline (flu-like sypmtoms). This was two summers ago. My second goal for gcmaf was to train his immune system to work better (i.e., PANS). He has been treated for several things which indicate that his immune system was not working well. He felt ill just being around others that were ill. His nagalese was 1.3 at the beginning of gcmaf treatment-it is now .87. He will be finishing his second vial and then stopping in a few months. He has been on .05 mL 2xweek for the entire treatment. His CD57 was 48 at the beginning of gcmaf-it is now 70. Took 3 yrs. with treatment for it to go from 24-48 before gcmaf. His viral numbers have been mixed. EBV and HHV-6 have been the two that have been testing HIGH for 3 years. His last blood work showed the following: EBV 4.0---Past: 3.6; 3.0 so not very impressed with this yet. HHV-6 2.89--Past: 4.34; 3.64 so this has shown improvement. Lymphs 45--Past: only one was below this at 41.1 (over a year ago), but the rest have all been 46-55. Not sure if this is significant but will take it. Not seeing much with the immune system yet. He is in the middle of a cough which has always triggered his PANS which it has this time as well (per ART muscle testing and some symptoms). Before this cough, he has felt better lately, than in the last three years (except for end of Valcyte two summers ago for 6 weeks). It has lasted over 3 months now. For the first time since my son got sick and never got better, he is referring to 'when he was sick' in the past tense, starting to exercise, and play soccer again. We are hoping for continued healing.

Hopefully, this sudden change in doctors is actually a good thing and contributes to your healing!! Best wishes on our trip and getting answers!