JuliaFaith

This sounds exactly like my son 3 yrs. ago. Anti-worm and anti-parasite treatment got rid of most of the fatique in just a few months. This was the first thing the doctor had us do before treating for everything else.

tpotter--sending you and your family good healing thoughts during this tough time. Best of all wishes for treatment!

Has your liver been checked? Read on, I believe WWW.betterhealthguy.com, that not being able to handle treatment may be a liver problem. Lots of good stuff on this site! Hope you can find a descent Dr.!

Just an FYI my dh endoscopy (had them done in the office after surgery) were $600+ per side of the nose. --expensive The 'deep nasal swab' is a large q-tip that is put deep in the sinuses and results put on a slide. --inexpensive

At my insistence, son's dr. asked for a deep nasal culture to test for - MARCoNS, coagulase negative staph, mold growth. This is not a pleasant culture to do while they are awake. We did find some things and treated for them, so glad that this was done during surgery. Surgeon said that tonsils would be checked for infections etc. but all they did was look at them, so not sure how you can be pro-active in making sure the culturing gets done for this. :-/ We only used homeopathic meds before and after surgery, maybe because my son had never tested positive for strep, plus abx never really did much for him. If you want those, just PM me, they are available at organic groceries stores. Best wishes on the surgery!

ProCalm is something that my son takes before bed. It has a probiotic and zinc and gamma Amino. My dh loves this stuff too. WWW.sedonalabspro.com

tpotter--Ditto on the ART (muscle testing). My son is not there yet, but would not be as healthy as he is without the ART testing done almost monthly to see what his body needs. Was a bit bizarre at first, but now with blood work confirming ART testing, I am a firm believer in a highly trained ART doctor!

Just a couple of thoughts from the 'outside the box' treatment. Have heard that red food coloring can cause problems with hyperactivity, both from my son's dr. and my mother (in the 60's-70's). My son had one prescription, where dr. had us wash off the red before taking the tablet. Increased tics for my son, means increased inflammation in his brain, PANS/PANDAS, so may want to consider anti-inflammatory at this time. At minimum Ibuprophen but it negatively affects the kidneys, I believe, so will want to keep an eye on that. For my son's current inflammation from his treatment (GcMAF), we are using Claritin and a supplement called 'Sage Memories' (have not received supplement yet), and fish oil is also real important for inflammation. As for peeing in bed, my son recently had a urinary problem where he had to go the bathroom frequently. It turned out to be an opportunistic bacteria in his bladder. Dr. said it is usually ecoli. but was another one in my son's case. He took a natureopathic supplement (Bio-Tech D-Mannose powder put in juice) and that got rid of it. Did a urine-test at Labcorp. to find out what was going on (my son said "take the cup in the bathroom and just go nuts! [scrubs] An MD would probably prescribe an Abx but hopefully one without red coloring. Take care.

Thank you so much for sharing your experiences (even if they have not been all roses!). Just read an article in the National News yesterday of testing being done in Russia by scientists where they have figured out that the '90% of unused DNA' in a humans' body actually responds to different frequencies and is able to communicate to the rest of your active DNA. They figure that what DNA is doing can be changed because of this finding. Fascinating stuff and supports using the Rife! Best wishes with the new lyme specialist, so sorry you have to travel so far!! Ours is 20 min. away but I always feel bad for the patients that have to drive/fly to get there! Take care.

Bio-film busting may be something to look into. Ds drank rock rose tea (biopure) during most of his lyme treatment. to make sure treatment could work. It seemed to have worked very well amazingly enough. Also, wondering how healthy sinuses and teeth (no silver fillings) are?

Have not tried amantadine. Ds has been on Valtrex in the past for several months but did not have any improvement per bloodwork. He is now on his second try with Valcyte (heavy hitter). Last year he was on it for 4-5 months and when we quit, he had his first 6 weeks of 'feeling better' then in the prior 2 yrs. He had several major disruptions to his body after that time (concussion etc.) and had a huge PANS flair-up. So that put us back at his previous, not feeling so well, baseline. Now that he is on GcMAF, which gets the immune system working again, he is having higher inflammation than usual. His OCD/intrusive thoughts went thru the roof (more than any other time in the last 3 yrs.) along with his other flu-like symptoms. So it appears the inflammation in the body definitely has a connection to the OCD symptoms. His dr. is putting him on a supplement called 'Sage Memories' to help with the brain inflammation along with taking fish oil.

Mold toxins can stay in the body for quite a while-do not know for how long. My son has used 'Health Force-1500 chlorella manna tabs(chlorella pyrenoidosa)' for detoxing for over a year now and is still taking them. He was taking 20 (small) tabs before each meal (total 60 a day). With that said, 'chlorella vulgaris' is easier on the stomach. Chlorella is really good too because it detoxes 90% of heavy metals (according to a well-known dr.) and you get your greens. You could start with just one bottle and see how he feels. My dh decided to take these for a year (or 6 mos.?) and he felt great. My turn next!

We did 'hair testing' (covered by insur.) and found that vit./minerals were not being absorbed adequately. After worm and parasite treatment there was marked improvement in hair testing 3 months later. Have you treated for these?

Just found out that I chose Valcyte over GCmAF last year and in hindsight, I wish we would have just started GC. The Valcyte is actually more expensive right now than GC. Also glad we waited because Dr.s know much more about using it as a treatment than last year.

Totally agree with you on these kids connecting. He has connected with a few 'Pandas' kids on xbox but they were younger. He is in 9th grade and attends the K12 school too! What grade is your son in? Son has had the worst OCD ever (for him) at the start of his new treatment and school has been especially difficult. It has calmed down a bit but he is only doing 3 classes out of 6. He does do weekly neurofeedback which he says helps him focus better and seems to be helping a bit thru this present "healing crisis." We are in WA state and you? Thank you for your reply. Take care.

My son has been on the PANS journey for over 3+ years now and is currently doing GcMAF injections to try to get his immune system working again. This has caused him some additional inflammation and so doing school work has been a bit more difficult. He is currently doing an on-line free public school and I am the coach! :-0 Anyway, he has a medical 504 for his schooling which gives him some extra time for assignments. He is currently about a month behind in one class because of an illness and now treatment. The teacher of this class just gave him a "Student of the Month" award for April! Yes, mom was crying! This was so unexpected and gave my son a much-needed boost during a difficult time. So good to know there are caring and loving people out there willing to help during these difficult times that we are all facing. Here is hoping that you all will find people like this during your journey as well! Best wishes to you all on healing!

Have not tried GcMaf yet. It's on the list, but I don't want to try too many things at once right now and I get confused with what is doing what. Have you guys noticed any improvements yet? I hear that it is good for CFS also. What about side effects? Gcmaf and methylation process are on my list, but further down the road. Have not noticed any improvements yet, but it has been only 3 weeks. There are no side effects from the Gcmaf as it is already in your body. But as your immune system wakes up there can be inflammation. www.betterhealthguy.com has a blog about his experience which is interesting to read. Also, Facebook has a page where people post about their experiences in case you are interested. You can start slow. Some are starting at .01 mL and gradually increasing. Just heard from one person that if you are at .02-.03/week there are ASD kids responding so she figures it is working. My son started at .05 2xweek (every 3.5 days-which is a good way to go) and is staying at that dosage until he is ready to increase, so he can finish school. Twice a week is good because if your inflammation gets too high, it slowly goes down afterwards, and you can adjust next dosage accordingly. My son did react quickly to it with inflammation. He has had 3 yrs. of flu-like symptoms and exposure to some mold as well (just heard from dr. that the mold and viruses co-exist symbiotically!). Best wishes on your treatment.

trintiybella--Mimosa Pudica powder is one that we used for parasites. One dr. said to start slowly (i.e., 1/2 tsp 2xday). We did treat for worms first which used prescription meds. Started with biltricide (2 days), then Ivermection/pyrantel pamoate (2 weeks), then Albenza (2 weeks) (Dr. Klinghardt protocol). Some of these treat parasites too.

http://www.epiphanyhealingarts.com/Lyme_Recovery_2013.html

Just brainstorming, but was there any smell of mold at Rothman? Have you checked his TGF-Beta 1 blood test to see if inflammation is causing it? Ever since my son started with PANS he has had stomach pain after eating and some nausea. The more treatment for lyme etc. the better his stomach felt until his last PANS flair and it came back immediately. The pain has slowly decreased after that until he started with a treatment that can cause inflammation and it is bothering him again. So it could be his PANDAS reacting with inflammation to strep or reacting to biotoxins in a mold building. Best wishes on healing!

My son is currently on Valcyte and when he says his symptoms are worse, I look at his back and sure enough he has raised, usually white bumps on it. I look the next day and they are almost gone and he seems to feel a bit better. It seems to correlate with detox is what I believe.

Just a thought as we are currently trying this, but have you looked at GcMAF.eu at all? We are mostly trying it for viruses and immune system. Did notice when son started on it 2 weeks ago, his OCD got as bad as it has been, along with body inflammation. This told us that it was working but we are going slow on dosage until he is ready to increase. It seems expensive, but at my son's dosage it is much less (and much less than IVIG if you have to pay for it). Cost is for 2 months worth, but it will probably last us 4 months or more. Best wishes on your healing journey.

We are about to finish my son's 2nd week on GcMAF. After his first injection, his flu-like symptoms were worse and instrusive thoughts that had just started before GcMAf were getting worse. He was also a bit sleepy (from someone who never admits being tired!) We are doing 1/2 dosage 2-times a week. This seems like a good way to go. 2nd/3rd inject. intrusive thoughts, initially, were pretty bad, but seem to be settling down a bit now, otherwise no increase in symptoms. Took to ND to have dosage checked to see if we should reduce. With muscle testing, she did not see any signs of infections, so it must be 'the immune system waking up.' She tested the entire vial (2 mos. worth) of Gc and son tested 'strongly' for it! Surprising since usually it is only 1 day of dosage checked at a time (not entire bottle of treatment)! Recommended taking Claritin or Claritin D for inflammation. Son's says Claritin helping a bit but thinking of trying Claritin D to see if it helps a bit more. The curcumin I had him taking was a 'no'. Advil tested 'neutral'. Dr. highly recommended that we stay on current dosage of Gc for now. Symptoms are not getting worse, at least. The symptoms do seem to slowly calm down as we get farther away from inject., and the beginning of treatment. Have read that it takes a couple weeks for system to settle down after initial inflammation (which usually happens in 2nd month not immediately!). ND asked what we usually do for PANS, so put son on 2 wks. Zith to see if that helps. PANS dr. (MD) says "healing crisis" and is following along with progress. She thinks that Zith will not help if no infection present. Interesting to get 2 drs. advice... Will cont. for 2 weeks anyway, since he did have a urinary infection recently and not sure it is gone. 4th injection tomorrow. We are hoping that inflammation will settle down a bit as we continue thru this. Oh, did notice yesterday 'several white lines on arm' (like if you scratched it with your nails) but those are gone today and now has one on leg (says he did not scratch). Strange. One ND said '2 months' treatment, another said '4-6 months' treatment, so not at all sure about length of this process. Also, there is a conference, that started yesterday on GcMAF, in Germany and there are some really great things that are supposed to be announced there so waiting to hear. If anyone wants to read about others' experience with GcMAF there is a Facebook page that is full of info.

Naturoepathic and homeopathic are different. Our experience in ND has been allopathic/supplements/tinctures. So all types of medicine. Whereas, the homeopathics I have seen do mostly tinctures. We have had good success treating lyme etc. and bacteria with ND. They do treat the whole body and expect it to heal by doing so. We do see our PANs dr. for nuerofeedback and for PANS flairs a bit still. Our PANS dr. does include some supplements and homeopathic medicine in her practice, as well as, abx and steroids. Steroids turned out to not be good for son because of lyme and lung issues. Best wishes on healing.

Awesome!