JuliaFaith

Just curious if anyone has had any success or any results from using the isopathic treatments. Our Dr. treated a patient who came in with PANDAS exacerbation caused by strep and he left the office 15 minutes later laughing! We saw the child. Stories of actual experience would be greatly appreciated. Thank you so much!

Our whole family is gluten-free. Originally it was started to get rid of ds12 stomach aches a year ago which worked within a few days. We naturally all just started on it and have noticed a few benefits. DS stomach aches cleared up (until his PANDAS exacerbation); my head is clear for the first time in years; lost weight around the middle area immediately (all my pants are too big now); dh cholestrol level went down to normal for the first time in years; can eat whatever we want besides gluten. Hope this answers your question.

We were told recently by an ND that my ds should have his tonsils removed. She really had no history to go by and was just saying this up front because typically there is strep involved. My son has never tested positive for strep, but has been sick for 8 mos. His MD and ourselves have decided not to take out tonsils, at least for now. He was diagnosed with a sinus infection at the beginning of this, but never had one before or since.

Thank you so much for posting your story! This is weird, but our dr. today said she was researching something and I asked her if she had heard of Bacillin and that is what she is researching! So we are following your story very closely. Thank you so much and we hope the best for your son.

Thank you for your story. So sorry about your neighbor, will sends prayers that way. Perspective, love, compassion, emphathy, the opportunity to learn from stressful situations, are all things to be thankful for this Thanksgiving.

Just heard about test results but do not know what they mean. Kryptopyrrol - 7.6 HPL - 133 Any ideas? Thank you!

We are gluten-free. My son had 3 mos. of stomach aches last year (b/4 PANDAS diag) and this diet made him feel fine within a week. He has been tested for gluten/dairy etc. and has shown no sensitivity to any of them. After the illness that touched off PANDAS his stomache has been non-stop bad (constant pain and nausea-worse after eating). I went on the diet just because it was easier and feel soooo goooood and my head feels clear for the first time in years. Also, lost weight immediately and can pretty much eat whatever now (except gluten). Another totally unexpected reaction was my husband's cholestrol level dropped for the first time in years way down! He still has a bit of gluten sometimes.

We took a 'heavy metal hair test' away with us after 1st visit with a Dr. in Klinghardt's office. Sent samples in a few weeks ago. We are waiting for results.

Thank you so much. We are currently waiting for CD57 results so very interesting reading on that. Put in the 'lyme' file for future reference.

It just so happens that I did some training on this yesterday (just a bit) and spending one-on-one time is really a great idea. Also, when you do have that time, see if you can get her to open up and tell you how she is feeling, if possible. My brother and I had the best conversations while doing the dishes when were younger. Teens are sometimes difficult to talk to in the best of times. Hope this helps somewhat.

Wow! Thank you for all the feedback. It is always so pleasantly surprising to hear about this stuff from others that have already tried it. What a wonderful community we have on this forum.

The comments on iodine usage here are very interesting. We had our first ND appt. for lyme a few weeks ago and she is doing thyroid testing, which makes sense now. Also, my ds is using a nebulizer with Tri-Quench (iodine) to breath in every night for Mico./mold and maybe Babesia. My son has not been diagnosed with anything yet so she is treating until she knows more. It sounds like there are many uses for Iodine.

Just heard of this today. Anyone had any experience with this? Oops just saw NancyD posted about this in Sept. Will check that thread!

The ND recommended 5mg of Melantonin before bed but we do about 4.5 mg (and we worked up this slowly). He is sleeping very well and even sleeping in sometimes which is really unusual. We got it at "Whole Foods", Brand: Source Naturals-NutraSpray Melatonin-timed release sublingual-orange flavor. We do 3 sprays under the tongue right when time to go to sleep. As for all the other supplements, he had to be off of them for 5 days to do the Urine test that I mentioned above, so not anything noticable except a bit more relaxed and sleepy during the day. Not sure if that is the Ketotifen... Today, a therapist recommended L-Theanin for anxiety (supplement) so will ask the ND about it next visit. The 2 supplements for lyme treatment are not even available in their dispensary yet (almost 1 1/2 weeks!) so not very happy about that part. Will keep you posted. Glad to hear that you are still checking out the lyme. It is really our last resort before doing IVIG.

Oops - the test I mentioned is $55 plus overnight mail not 100-150.

Thank you for all you do and all you have done!

Hi Dut: Just realized yesterday that the urine test my son is doing can give an indication of lyme and/or co-infections. The test we are doing is thru "Vitamin Diagnostics", 540 Bordentown Avenue, B6, Suite 4930, South Amboy, NJ 08879. I believe the cost is $100-150. The name of the test is "Kryptopyrrol Random Urine." Dr. Klinghardt's protocol is 5 days with no vitamins/minerals prior to test and a 24-hour collection (yuk). Let me know if you need add'l info. Have not been on top of this due to another family crisis occurring. Found this on the web-have the entire article saved but not the website. Let me know if you want me to e-mail you the entire article. "Our ability to measure CD-57 represents a breakthrough in LB diagnosis and treatment. Chronic LB infections are known to suppress the immune system and decrease the quantity of the CD-57 subset of natural killer cells. As in HIV infection, where abnormally low T-cell counts are routinely used as a marker of how active that infection is, in LB we can use the degree of decrease of the CD-57 count to indicate how active the Lyme infection is and whether, after treatment ends, a relapse is likely to occur. It can even be used as a simple inexpensive screening test, because at this point we believe that only Borrelia (Lyme bacteria) will depress the CD-57. Thus a sick patient with a high CD-57 is probably ill with something other than Lyme, such as co-infections. Really high numbers can indicate other co-infections. Range 60-360 with normal being 200. Best wishes.

The Dalai Lama (sp?) says to always look forward what is past is past. Each day is an opportunity for learning and becoming a better person. It sounds like you have many opportunities for that right now. Live in the moment and learn what you can. Easier said than done, which a lot of people can identify with on this forum. A lot of us are struggling right now with all of this but it is important to keep it all in perspective. Good things seem to come out of bad. Just realized the other day, that thru our struggles, others we know, are learning from us. Actually had a parent tell me that! So try to keep learning and in doing so you may be able to help others in the present or future. Best wishes on a quick recovery, now that you know the direction to go towards for healing. If you cannot afford treatment, ask for help and you may find that it is there. Contacting a LLMD and talking to them might be the first step.

Thank you so much for your story. We are 8 mos. into not much resolution at all but resently went to a LLMD and are starting treatment. We are not sure what is going on yet but hope to discover something in the near future. We have not done IVIG yet, but will if there is no resolution/solution with the LLMD. Best wishes in continued recovery!

My son had strep in his gut (not his throat) and suspected Lyme and the LLMD we were seeing at the time did recommend a T&A. Supposedly the tonsils can harbor bacteria/become an absess and then no matter how much abxs they give you, they sort of get blocked right there at the tonsils. We did proceed with it and I can't say that it made a dramatic difference, but who knows what it would have been like had we NOT taken them out. The biopsy did reveal deep crypts consistent with recurrent strep (I swear I only knew of 1 strep infection!!!). I think the problem with our kids is that they do not respond to strep the way a healthy person would, so sometimes you don't even know they have it. I am actually scheduled to have mine out because I am not responding to abxs for strep. Right now my cultures come back negative but the tonsils are swollen and the throat is read. My PCP sent me to the ENT who readily said I should just take them out. It is surgery, they do have to put you under, and the recovery is not fun. It's not an easy decision. How do you find strep in the gut? My ds has had gut issues big time and all his tests have come back neg. My husband was just was referred to an ENT today for continuing sinus infection and may be in your shoes soon. My ds pcp is not liking the tonsil removal idea which is why I put it on this forum.

Boredom seems to give you time to reflect on things in life. Hope to have some soon. Glad to hear you have that opportunity. I have also been to many art openings which are great if the art is interesting. Take care.

This ND that we just saw is recommending tonsil removal but ds has never been diagnosed with strep. She seems to think that did not matter. So wondering if anyone else had any experience or heard about this. Any information about this would be helpful. Thank you!

Only have a second, but the blood work we have done (a lot) looking for infection (which we have not yet found) all went to this new ND we are seeing. She was very glad that it was done and we had it available to bring with us. Best wishes.