JuliaFaith

Was only able to view a bit of this conference but following are a couple of things that I learned: 1. If all else fails with Babesia treatment (Abx, Artemisin etc.) Cryptolepsis also works well. 2. Brucellosis is another co-infection not normally discussed or mentioned. 3. Babesia can be covered under insurance if PCR is positive (I believe this is a blood smear). 4. In terms of exercise, one dr. recommended physical therapy as a good starting point. If you push too hard with this it could cause a relapse. Wish I could have seen all of the conference. It was very good.

Ds was diagnosed with this, in addition to, mico pneu. This was after several neg. tests results from prior doctor. My son's ND has him using a nebulizer (~$100 from compounding pharmacy) with liquid iodine from Tri-Quench - Scientific Botanicals (3-4 drops). She told him to do this once at night for 1 year. He is almost at the 1 year mark so will see if done yet. From what I hear these pnuemonias are difficult to get rid of. This is just one of many treatments he does daily.

You can go to their website www.turnthecorner.org or e-mail them at medicalinfo@turnthecorner.org to get lyme doctor names for your area. This was mentioned at the Ilads conference.

This was on the lyme board, but thought someone on this forum may be interested. Not sure what time the PANDAS/Lyme speaker is on. Should be able to find out at the following thread: http://www.ilads.org/lyme_programs/lyme_events_video.html#page=page-1

You may want to PM EMersonAilidh on this forum who also lives in Texas, I believe.

PM'd you Susan.

Thank you for all your great information!

My son's CD57 was 24 when we started treatment for 'lyme' and all the other issues listed below. He also tested neg. on Mico several times with another doctor and tests. We took the route of visiting a lyme doctor first, before spending loads of money on testing. My thinking was, it can only possibly help but not hurt too much (psychologically because of all the dr. visits in the past). It was the best choice for us and saved us lots of money (initially anyway). Lyme doctors are not always 'in-network' so costs can be higher. But if it gets your children on a better healing track, then it is more than worth it. You seem to be on the right track. Best wishes.

My son also took the BEG spray and we had to keep it refrigerated because it had to be kept below 70 degrees (if I remember correctly). It burned at first but then he says that he just got used to it and finished it over the next 3 months. But it was always cold.

Whew! So glad to hear your news. Hope you get feeling better soon.

This is so timely! Was wondering about this. Thank you so much for the info.

Good to know what to look for if it is not working. He has already had one shot and had no reaction. Do not have the prescription yet so will see. The only side effects that I found on-line (so far) are excitability/tandrums possibly in the beginning. Really appreciate your feedback. Take care.

Thank you mdmom. Your post is helpful. Will give them a try.

1. First 2 days only: a. Biltricide - 1 tab 3xday with meals for 2 days. 2. Two weeks immediately after biltricide: a. Ivermectin - 6 mg 4xday between meals for 14 days. TAke during same time as pyrantel pamoate - see b. b. Pyrantel pamoate - 500 mg 1xday at bedtime for 14 days. Take during same time as ivermectin. 3. Two weeks immediately following ivermectin and pyrantel pamoate: a. Albenza - 1 tab 2xday with meals for 14 days. 4. Two weeks immediately following the Albenza: a. Alinia - 250 mg 2xday with meals for 14 days. This is one of Klinghardt's protocol in case your interested. They are also all prescription meds. Alinia is an abx and does quite a few other things as well. Just looked at notes for last Dec. and it looks like energy level slowly climbed after 3 weeks into this protocol. He felt a bit worse on Albenza for 1st 3-4 days but then back to higher energy and feeling better.

My son has issues with hypothyroid problems. He was treated with 'Armour Thyroid' prescription until just this last week. Now he is on 'Nature-thyroid' (non-prescription). Also, after doing some reading it appears that the adrenal gland is also treated along with thyroid problems. Cannot remember exactly why there is a connection but it seems if the adrenal gland is not working correctly it affects the thyroid as well. Son has been treated with 'Drenatrophin' and 'Adrenal Ven' (both are non-prescription). Just an FYI, my son's symptoms were flaring up after returning to public school after more than a year, and his thyroid numbers (TSH and T4) completely flipped in terms of high/low numbers. I asked the doctor why the thyroid would react to virus's in other people around my son, and she said that the thyroid very easily reacts to other things happening in the body. Hence, the flare-up of 'flu-like' symptoms which my son has had for over a 1 1/2 yrs. We are still waiting to get results back that might indicated 'mold' issues in the buildings/rooms (mostly the portables) that he was in for classes. Sorry if some/all of this does not make sense, it is difficult for me to understand as well.

Not sure about all of these tests, but one of the first things our ND did was to do a treatment for parasites/worms. In 11 mos. my son has been thru 2 of those treatments. Before we came to the present doctor, my son's last doctor had him on curcumin to keep inflammation down as much as possible. I believe this kept him from getting more ill (not better, but not worse). Good you are getting some information that can be instrumental in getting treatment started. Best wishes.

Thank you 'Suzan' for your input. Just feeling good might help get this boy back to school next semester. Best wishes to your family.

Have either of you looked at EMF's? They have quite an influence on mold (faster growing by 600 times, I believe) and other things. We just put in Stetzer filters all around our house. Was surprised to find that the room my son spends most of the time in was the worst of all the house. After putting them in I immediately felt some kind of relief in my sinus area. Was pleasantly surprised since this is very new to us. Thank you Familyof5 for your information. It will be very helpful as we proceed forward. Best wishes for you and your family.

Can you include me on this info. too? We redo ERMI test on our current house in 3 months to see if we can stay here.

DS was recommended to take these for treatment. Have read that they only help child be more 'normal', but doctor said that it should also keep him from reacting from viruses around him. It was recommended that he take 5 mg every day, but my son said he would do it every other day for a month. After that, it would be twice a week. From what I read in one article, it said that taking the injections for 2-3 years can help with actual healing of symptoms. Also wondering if this is the methylation treatment that was briefly mentioned on this forum? Any ideas or information would be greatly appreciated.

When and with what does your daughter take the CORE? When my son started on CORE, it was advised (by doctor) that he start with 2 capsules with a large meal (lunch or dinner) and work up to 4 'as tolerated.' Also, to watch for stomach upset. If this is happening, you may want to go back down to 2 for a while and see if that helps.

[ Juli - who did your MARoNS test? I thought my son had everything tested for sinus, but this is new for me. Fortunately, he is doing well now with IVIG, but he will not be on that forever... Thanks for the info! Our ND (lyme doctor) asked if the ENT doing son's T&A could do the test while he was asleep. It is a deep nasal culture and she asked for the following tests to be done: MARCoNS (super staph), coagulase negative staph (infection), & mold growth. Dr. (not ENT) was surprised when the staph came back positive the first time since she has to do the culture several times usually to get a positive. We figured it was because he was asleep so they could go really deep. Yuk! Lyme doctor then ordered the BEG nasal spray to treat. Hope this helps. Best wishes on healing.

My son was put on a 'gluten-free' diet first thing when diagnosed with PANDAS just to keep inflammation down as much as possible. He tested neg. for allergies to gluten, dairy etc. so still doing dairy. I also went on the diet to make things easier and my head cleared up so much and I feel so good that I'm not sure if I will ever go back. It is much easier now that we have been doing it for a while. Our grocery bill is higher though with gluten-free products and organic. The organic is to keep toxins as low as possible. Will be interesting to hear what the thyroid specialist says. Have you had a deep nasal culture done for MARCoNS, coagulase negative staph, and mold growth? My son has never had strep or sinus infections and he had the staph come back positive (had it done while under for T&A)! Was treated for 3 months and hopefully it is gone now. His energy went thru the roof during/after treatment. Hope you find out some answers. P.S. Have you heard of "Eating Too Many Goitrogenic Foods causing a lump"? http://thyroid.about.com/od/gettestedanddiagnosed/a/thyroid-levels-fluctuating_2.htm

T4 was high on testing so son was put on thyroid med. (Armour 30 mg) for hypothyroidism (10 mos. ago). About 3 months ago it was increased to 60mg. Now he is testing high on TSH (before it was normal) so was put on 'Nature-throid' 65 mg a day. Have heard that lyme can cause all of this but not sure why with 11 mos. of treatment tests are showing worsening of the thyroid not better. Hopefully will know more at visit next week. He is seeing an ND lyme doctor. Will try to post any additional info. that I learn at this visit. Just an FYI, he was having some 'flare-ups' recently along with exercising a lot more so not sure, if anything, the exercise has to do with it. Have heard that exercise can cause 'flu-like' symptoms for people with thyroid issues. Best wishes for your daughter.