JuliaFaith

Detoxing can cause rashes. Do you have a good detox protocol set up? Even with good detox protocol set up, my son had periodic rashes thruout parasite/lyme/mico treatment. We used an UNDA 270 Ointment, a homeopathic cream to put on rashes. He never had such a large rash.

Did just PM you a lot of info. (not sure if any of it is helpful). When my son started Valtrex it had a blue color on the outside which his dr. made me wash off. Did not seem to bother the meds. and was easily washed off when I first picked them up. Have heard that food coloring can increase hyperactivity. When my son was taking this he was also being treated for many other things so not sure if he reacted to it or not. He also had a continuous flair going on along with add'l flairs at times so difficult to tell. The Valcyte was more noticeable that way (flair of flu-like symptoms) but he had finished a lot of other treatments at that time.

Also with the silver, someone at our old dispensary took it for strep and he said it worked great getting rid of it.

Do not know about the strep, but mico. can be a co-infection of lyme.

Have you tried chlorella or Detox Deodorant (goes on bottom of feet; underarms; and around neck at night)? Also, interesting that you are talking about the liver. We are going to start GcMAF injections (hopefully next week) and just read on their Facebook site that the nagalese (the stuff you do not want a lot of) tends to hang out in the liver where it can easily cause havoc on the immune system. http://www.facebook.com/#!/groups/439553602725764/ Hope you find something that works for your daughter.

Have you done any parasite/worm protocols? These helped with my son's mood liability tons when he was first starting treatment. Did see them come back with a new PANS flair but slowly they are decreasing as he gets farther away from the flair. Son was also testing for KPU at the beginning of treatment so it seems like it would be important to look at this if you have not already. There are some great ideas on this thread. Hope you find a doctor that is more supportive and knowledgable.

So glad to hear about your daughter! Good news! Just one question, is it true that organic does not mean GMO free?

Can really empathize with you. My ds14 will have been thru all kinds of treatment for lyme, co-infections, bacterial, viral, and mold detoxing and still has flu-like symptoms going on 2 yrs. in Nov. Has not done IVIG. He has been seeing a natureopathic dr. who says he is testing healthy. Three months ago we did, what we think is the end of mold remediation, when he actually started to admit feeling better! This lasted 6 weeks until he caught chest infection,his PANS trigger. Not much improve since then. Also, when he started feeling better, my dh started seeing same dr. for chronic sinus bronchial issues and was feeling better (more than in several yrs.). Now my son seems to not be improving and my dh has been feeling like sinus infection is back. Not sure if father and son have something going back and forth. Dh on abx again and had 40 injections in face, chest, back etc. which has srarted making him feel better the next day (not a pleasant treatment!). So watching that scenario play out. Have you checked for mold in your home? Lastly, sorry so long, have decided to try GcMAF injections in hopes of speeding up recovery. These are from a blood product but are sanitized more than most blood products (so they say). Hope something in our story gives you something more to look at. P.S. Gluten-free too to keep inflammation down as much as possible.

Have heard that there is a reason for it and should not ask them to stop. Ya, counter-intuitive. Would seek out a psych. that is knowledgeable about it. Also would insist that person get blood tests for drug usage, i.e., pain killers, cocaine, marijuana, heroin etc. Just a few ideas that I learned at a conference.

So much great info. on this thread! Just wanted you to know that we have seen that wonderful doctor as well. After 6 months with her and IVIG our next choice, I decided to see a natureopathic doctor. This was a good decision for my ds who just did not respond to abx. or anything else and seemed to be affected by mold (in addition to everything else). Son did "start to feel better" 3 months ago and then he caught a chest infection which triggered a PANS flair. Two months later he is still not back to where he was before so we are looking at doing some GcMAF injections possibly (instead of IVIG). He is amazingly muscle testing pretty healthy which is good news. We are checking in with the 'dr. we love' again since it has been over 1 1/2 yrs. since we have seen her just to make sure we have not missed anything new with her treatments. My son is also having a difficult time after feeling ill for so long! We have got some recent help with this recently as well. PM me if you have any questions about our experience. Best wishes on healing!

Ok, we are the odds ones here dealing with a natureopathic doc. If doing abx make sure to include some probiotics taken at least one hour from anx. Test for KPU and viruses. Treat for parasites/worms ASAP. This should allow abx to work better. Lastly, make sure you have a list of detox ideas on hand to use now and/or in case of another flair of PANDAS symptoms. Oops, have a plan in case another flair from trigger happens. Son had flair after a year of treatment and I was not prepared Now it is posted on inside of health file: Great that your child is responding to abx!

Just another thought Ellen on the fish oil. Make sure it is clean/pure so you are not getting more heavy metals introduced into your system. PM me if you want a place to get reasonably priced salmon oil that has tested well.

Thanks for input S&S. Do you know the dates on the feedback? Have read that dr.'s were starting off at a higher amt. but have started doing lower amts. because of inflammation.

Did you try the Motrin full dose 3xday for 5-7 days and then 1 dose/day for 5-7 days? This helped a bit with my son's last flair even while on abx.

Sorry I do not have any dr. ideas. As for the tests to run, our ND does the 'TSH+T4F+T3Free' tests with LABcorp for thyroid. She is trying to get #'s below '1' on all of these even tho range is 0.45-4.500.

Ds is still in a PANS flair (8 weeks) now. Had 6 weeks 'just starting to feel better' (1st time in 2 yrs.) before flair. Wondering what these test results could mean: TSH: 5.55 (HIGH)- thinking I should increase thyroid meds to 2 a day (1st prescribed by dr.) instead of the 1 1/2 we went with because son did not feel good on 2. CD57: 48 (was 24 1 1/2 yrs. ago) Not at 60 so wondering if should continue on Babesia/lyme treatment or could it be mico? Lymphs: 53 (HIGH) Son was fighting chest infection at the time but these #'s have been high since original PANS flair. Have heard systemic toxicity - any ideas? TGF-b1: 4420 (<2000 range) 3 mos. ago it was 11,000 so improvement but still showing inflammation - have heard this # can change from day-to-day...also mold indicator so thinking that is not part of this flair? Antistreptolysin 0 Ab: 6.8 (normal) Have never seen this but may mean that body is going after strep if high? -Begin. of 2nd week on camel milk. Really only seeing nausea every time he drinks it so has some ginger which helps. Maybe some mood enhancement possible... -Ready to look at GcMAF again to hopefully speed up healing. Anyone else tried? Any ideas would be appreciated. Thanks ya'll (had to say it since my dh just arrived in TX).

Ds is still in a PANS flair (8 weeks) now. Had 6 weeks 'just starting to feel better' (1st time in 2 yrs.) before flair. Wondering what these test results could mean: TSH: 5.55 (HIGH)- thinking I should increase thyroid meds to 2 a day (1st prescribed by dr.) instead of the 1 1/2 we went with because son did not feel good on 2. CD57: 48 (was 24 1 1/2 yrs. ago) Not at 60 so wondering if should continue on Babesia/lyme treatment or could it be mico? Lymphs: 53 (HIGH) Son was fighting chest infection at the time but these #'s have been high since original PANS flair. Have heard systemic toxicity - any ideas? TGF-b1: 4420 (<2000 range) 3 mos. ago it was 11,000 so improvement but still showing inflammation - have heard this # can change from day-to-day...also mold indicator so thinking that is not part of this flair? Antistreptolysin 0 Ab: 6.8 (normal) Have never seen this but may mean that body is going after strep if high? -Begin. of 2nd week on camel milk. Really only seeing nausea every time he drinks it so has some ginger which helps. Maybe some mood enhancement possible... -Ready to look at GcMAF again to hopefully speed up healing. Anyone else tried? Any ideas would be appreciated. Thanks ya'll (had to say it since my dh just arrived in TX).

So good to hear your news! Enjoy every minute. Its' these small moments that carry us thru everything else. Look forward to hearing more continuing great news!

Just want you to know that it is great to hear your positive progress. May it continue until you are back to good health.

Son's dr said it is detoxing. After over year of lyme \ coinfection treatment have not seen any more rashes.

While my son was being treated for viruses, he was also being treated for lyme, babesia, mico, etc. So there were many mini flairs going on so not sure if the Valtrex was part of any of that. He did seem to feel worse on the Valcyte for several days a month. Sometimes for 3 days, some for more. Did have higher TGF-beta 1 (inflammatory marker) #'s during the treatment which dr. thought could be from anti-viral treatment.

My son was on Valtrex (and supplements) for several months for another virus that showed high on tests. Did not improve and ND believes in treating everything that shows up so the overall load on body is low so when an illness happens body can fight it better. She then gave us the choice to do Valcyte (big anti-viral that makes it so virus cannot replicate) or GCMAF. Decided on Valcyte. After about 4 months she took him off it. Son started to feel better after 2 Yrs. Then he caught chest infection, his PANS trigger, 2 months ago and has not made it back to that new better baseline. Dr. said he is testing healthy with muscle testing. Waiting on blood work to see if he is keeping those viral numbers down. If not next step is GCMAF. So it seems that you may want to address the virus. Maybe not all viruses are created equally tho? Sons was HHV-6. We have not been measuring titers just mostly how son is feeling so hopefully that approach will work for you. Best wishes in healing. Sorry about typos hard to type on phone.

My sons dr. asked about frequent urination frequently! He did not seem to have it but he was on desmopressin for quite a few months that treats it. Best wishes.

Have not heard that and son has been on the strongest.

Just posted recently about my son's 'big PANS flair' after a chest infection. The infection went away pretty quickly but the OCD, cough, stomach pain right after eating, nausea, muscle aches, bad thoughts, and noise (tic?) are all still there after 6 weeks but seem to be slowly getting better. Took him in for dr. appt. and she says he is basically testing well medically which was good to hear. Took him off a lot of supplements and kept him on some. Stayed with: Salmon oil/chlorella; Ivy Calm/Bronchfest (lung inflammation); Rhizinate (digestion); Alinia (20 days-finish parasite treatment); Brazil nuts (selenium); Chia seeds (vitamins); yeast suppositories (normally used by woman); Vitamin A drops; thyroid meds; ketotiphen (stomach distress); Grapefruit juice with Lipo-Health (detox), Artemesinin, Mimosa Pudica. She is still recommending GcMAF since healing is taking so long. Also waiting for blood work to come back to confirm ND's muscle testing. ND also jumped on the 'camel milk' idea right away. She said "try it!." Apparently, there has been some dicussion about it in her circles recently. So will be trying some here pretty quickly. Decided to go see our PANDAS dr. after 1 1/2 yrs. to see if she has any new ideas on the PANS front. Our last visit with her she was recommending IVIG. I figure all the medical stuff will take a couple of months and then will make any decisions at that time to see where we go next (hopefully not bankrupt!) Finally, we saw a therapist today that was great! She said that any kids, especially ill ones, need 3 "Fun Factors" every day, (i.e., fun things to do). So we are writing a list to show her at next appt. One I read about in a book was the 'Silly Walk-Monty Phython' which you can find on Youtube. Goofy! Since son is 14, she also recommended as many 'friend' visits as possible every week. Our 'PANS' doctor refers patient to her so she knew about PANS which was great. She also mentioned that the recent concussion could be causing some of the neg. thoughts as it can sometimes take a year for brain to recover. Have always thought my son needed to wear a helmet 24/7! Take care and keep healing!