JuliaFaith

In addition to the bentonite clay thread, my dh and I are using that ($10), while our ds13 was just started on the BioPure Calcium Bentonite Living Clay. It is 43 mil. years old and it says that it has "tremendous drawing power." 1 tsp in 8 oz. of water/juice 2xday, 1 hr. after breakfast and 1 hrs. after lunch.

Since my son seems to be flaring up more these days, I give him water with a little organic lemon or lime juice to drink practically all day for detox. This along with an extra epsom salt bath seems to help. He is also doing a bunch of natureopathic/homepathic type things as well.

Since my son seems to be flaring up more these days, I give him water with a little organic lemon or lime juice to drink practically all day for detox. This along with an extra epsom salt bath seems to help. He is also doing a bunch of natureopathic/homepathic type things as well.

DS is also using GSE in a 'cocktail' along with Artemesini, quintessense, virescence, neem, and raw egg yolk. It is the worst tasting thing ever, but he sings a Tenacious D song which gives him strength to drink the aweful stuff. lol Great to hear your treatment is winding down. Hope this continues for you.

Before ds13 started lyme treatment, he had a "PANDAS Exacerbation" which took us a few days to start to treat because dr. was out of town. We started abx 2 days later but by then his symptoms were getting bad fast and he had a headache that was 'stabbing' and it lasted 5-7 days. Slowly went away (not the original headache). Went to emergency room per dr. and they did absolutely nothing except give him tylenol and turn bright lights on to talk to him. This was at a Children's hospital. One of his continuing symptoms, before this happened, was a dull everyday headache.

Thank you for sharing this. It was good for my older son to see so he could understand what his younger brother is going through. Best wishes on recovery.

It has taken me a while to get there with the 'chronic infections' as well but with all I have read and experienced so far, it sure seems likely. Thanks for your input and thoughts. Julia

Thank you so much for sharing this interesting article. It makes me think that our doctor is definitely on the right track. Just found out today that some of the supplements we are taking are actually made by the lead doctor at our clinic (BioPure) and are some of the same kinds recommended in this article. Best wishes on healing! Julia

Tried to PM you but your mailbox seems to be full.

My Ds13 is seeing a doctor in Klinghardt's office. Every time we visit, there are car's from other states in the parking lot and sometimes people being dropped off from the airport so I feel very lucky to be there. There is a process to get in to see a doctor in the office (ex. call office mgr. back and discuss whether you are eating 'organic' and believe in natureopathic/-homeopathic options). We are now using abx after treating without for 3 months. You can read my past threads to get treatment ideas, but really, every patient has different needs and the protocol is specific to that person. My son's protocol changes with every visit depending on his ART testing and his progress. We were recommended by a previous dr. (PANDAS) to go to the best lyme doctor possible because my son had very little improvement with treatment. I am very glad that we were able to do that. There is a doctor in Seattle that seems similar to Klinghardt and one I would consider. Will PM you an old list of recommended dr. from Klinghardt and the one from Seattle. Best wishes for your child!

Second that on SFmom Reply. Thank you for all you do on this forum! Looking forward to your full recovery! Julia

Did you say that the dr. had been called? I've heard that a sore neck can follow strep after it has been going for a while.

Tried to send you a second PM and it looks like your mailbox is full.

So glad to hear you are starting treatment! On the herxing issue, my ds13 has had 3 flares just in the last month which lasted 1-3 hrs. each. They happened around midnight for some reason. He is on his 3rd month of treatment. For flares, his dr. recommends epsom salt bath, ibuprophon (sp), and benedryl (for itching/rashes). Last time we acted quickly on bath & ibu and it last 1 hour instead of 2. His energy seems much better but other symptoms are the same (flu-like). His Dr. just recommended he get his tonsils removed since his improvement has been slow. She also recommend Cranial Sacral Therapy (sp). Just having a plan, in case you have a flare, is very helpful. Detoxing is a great way to get ready for treatment as well. Will PM you an article on this. Take care and keep us posted.

We order vitamins (liquid) from Youngevity.com The vits are excellent and have heard the owner speak a couple of times. The site is a bit flashy and somewhat difficult to navigate but the products are all really good.

DS takes 1/2 capsule in the morning and 1/2 at night. He is also on Augmentin. The Tindamax are in capsule form so he gets half the inside in the morning and 1/2 at night. He likes eating and crunching on the little balls. They are 100 mg for the whole capsule. Sorry for the the vagueness, quite busy.

Thank you for your replies. Very greatful! Elizabeth: Thank you for the info. on Arteminisin/Grapefruit seed extract. My dh had used the grapefruit seed for sinus infections at one point. Dr. has us mixing the following into a 'cocktail' 2xday: Artemesinin Quintessence Virescence Neem Grapefruit Seed Extract Raw egg yolk (organic, local) Ds hates drinking it but the amt. of tablets that he was taking has decreased substantially. Thank you as well for the info. on tonsils. I was really against it at first but now not sure. Fixit: Interesting to hear different perspectives on tonsil removal. Our first day at this dr. (one in Klinghardt's office) she told me that any child with PANDAS should get tonsils removed. Now 3 months later (in addition to 1 yr. of very little improvement) and very small amts. of improvement she recommended it again. She said that even though he has never had strep they still could be harboring infections. She also said it usually takes her 6 months to convince parents to go thru with it and tonsils are usually in really bad shape (not sure if a surgeon would say otherwise). All of his tests (except PANDAS) have all come back normal but he just is not improving much and waiting a year seems like enough. When Ds13 heard the dr. mention getting tonsils out, he wanted them out the next day! What a surprise! Throat has been sore and swollen for the last year. We are going to see an ENT next month so will posting. Take care. Julia

DS is on 3 months of therapy so far, mostly for parasites/worms. Now that he is showing some signs of getting rid of these we are moving onto lyme treatment more aggressively. He is now on Augmentin (875 mg - 2xday) possibly for 3 months. Along with the abx, she wants him to take supernatant (2 caps 1xday). We are continuing with most of the nutrient support (CORE, Vit K2, Vit. A, EFA, Calcium, Selenium) and added on "Lithium - orotate." Have not researched this yet. Took off UNDAS, FloraStor & Beta glucan, and replaced with: Artemesinin Quintesesce Grapefruit Seed Extract She has us mixing these with some current supplements to make an antimicrobial 'cocktail'. We are also doing the 'hair analysis' again and 'blood draw' for CBC, ASO, & Chem panel (to check liver/kidney function). Because my ds is not progressing as quickly as she would like, she highly recommended that he get his tonsils removed. DS has had 3 flares in the last month each one lasting between 1-2 hours, so glad that they have been minimal. If you know what any of the new supplements are for please let me know. Thank you!

Are any of these available through Canadian pharmacy? Just saved ~$375 on prescription (Alinia)there that will be mailed out of the UK and we should receive in 2-3 weeks. Oh, savings was twice amt. mentioned above since prescription was for 60 tabs. instead of 28. Marks Pharmacy 877.888.9265 My dr. faxed my prescription straight there and they e-mailed me a form to fill out and I faxed it to them on toll-free number.

Here is an article that I posted recently about the CD57 test. http://www.latitudes.org/forums/index.php?showtopic=12182&st=0&p=101945&fromsearch=1entry101945

Susie: Researched her about 4 months ago so do not remember where I read it. It may have been posted on the internet from a prior patient, not sure. You could also call her office and ask. Also, Vitamin Life 3, 425-869-7000, has at least one worker that seems to know about Dr. Marra. With Vitamin D, sometimes it is not good for lyme. My ds was originally put on it then taken off because of some tests that came back. I did not understand the explanation from the doctor at all. Best wishes.

We do not have any personal experience with her just heard thru a Lyme organization in Oregon that she is good with kids. Also, saw on her website that she uses the Marshal protocol which there has been some discussion on this forum about its' effectiveness. We were going to go to her until we got in to see a Dr. in Klinghardt's office. On one of his on-line discussions, he states that the Marshal protocol does not always work. The workers at our local Vitamin Life store seem to know who she is as well. Will ask them next time I go in (soon) and see if they know anything else. On another note, we stepped away from our PANDA dr. (we still see her bi-monthly) who we absolutely love and it was the best decision we could have made since ds was not progressing at all (that we could see) under her care.

DS13 was diagnosed with PANDAS and treated for a 'rare parasite' that is in pools, rivers etc. He never progressed with abx or steroids like most "PANDAS" patients. After trying that treatment for 6 mos. and reading the forum on here I decided to take him to see a lyme doctor. At the first visit (before tests etc.) she told us that he probably had lyme. By the 2nd visit all the tests along with the diagnosis pointed in that direction. We are now in the 3rd month of treatment and I am so glad that we went to the lyme dr. She is an ND but insurance covers most of the visits. Insurance does not cover the natureopathic meds. but those can be run through an HSA plan, if you have one. The head dr. (MD) in this office believes that the high amount of parasites (worm/microscopic parasites) are the main cause of the body breaking down and causing all kinds of symptoms, including auto-immune disorders. He thinks that by treating these parasites that the body will eventually begin to overcome the high amount of parasites and start getting rid of them on its own and heal itself (depending on damage that has already been done). Just another viewpoint. Hope this helps. All of this just makes sense and, for me, made it easier to understand what we are up against in the battle to heal. Best wishes.

My ds just had a bit of a flare where he was feeling a bit worse for 2 days and had a purple rash on his chin (along with red rashes on his hands and all-over itch). It went away within 3 days along with the worsening symptoms. Today he now has another purple one on his neck. They seem to only last a few days and then go away. Not sure if it is herxing?