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Everything posted by Christianmom

  1. My son has HHV6 and if my notes are right, he was give "ultra olive leaf" by Research Nutrition for that. Two per day. Can't say if it is helping yet. He's only be on it for a little over a week. He will be re-tested next Friday.
  2. Suzan -- Here's the link: http://articles.mercola.com/sites/articles/archive/2009/08/04/Dr-Klinghardts-Treatment-of-Lyme-Disease.aspx I read the article further, and maybe I answered my own question. It says this: Most often several of the “co-infections” are already present prior to the infection with Bb or other spirochetes.
  3. I read this in an article by Dr. Klinghardt: "The list of significant [lyme] co-infections is limited: roundworms, tapeworms, threadworms, toxoplasmosis, giardia and amoebas, clostridia, the herpes virus family, parvovirus B 19, active measles (in the small intestine), leptospirosis, chronic strep infections and their mutations, Babesia, Brucella, Ehrlichiosis, Bartonella, mycoplasma, Rickettsia, Bartonella and a few others." There are many more infections here than are typically thought of as lyme co-infections, and I was curious if anyone has any thoughts on this. Is he saying, for instance, that ticks can pass roundworm? This is very interesting to me because my son tested positive for "hook worm" in his Metametrix testing. I was also wondering what he meant by "chronic strep infections." Is he saying that ticks can carry more virulent types of strep that are hard to get over and therefore cause chronic infection? Would this be the reason why my son's DNASE continues to rise while his ASO is normal? I would appreciate anyone's thoughts.
  4. Ladyjane -- Thank you for the encouraging words. We are praying that this doctor will be an answer for our son. I will pray for you and for your appointment. Please post what you find out.
  5. Hi LaurenK, We tried steroids three times with the most success the first time, though the improvement only lasted 2 days. Dr. T referred my son to CHOP for plasmapheresis, but Dr. Elia at CHOP would not allow it because my son did not meet her PANDAS "protocol."
  6. Just wanted to post that My son had his first appointment with Dr. Schwartz last Wednesday. I can not say enough positive about this doctor--phenomenal man. He is the first doctor we have seen that fully understood ALL my son's labwork--KPU, viral panel, Metametrix stool profile, hook worm and other parasites, Shoemaker mold panel, c4a, strep, Igenex, etc. He has been training under Dr. Klinghardt for 10 years and follows all his protocols. He as well will prescribe meds if needed. Again, he will follow Klinghardt's protocols for the meds. I can't describe the ART testing because it is so unique, but I will say my husband and I felt Dr. Schwartz was right on the money with everything he found. I have not slept so well since my son has been sick as I have since seeing this doctor. He truly gets it all--PANDAS, lyme, autism, KPU, severe OCD, etc. Dr. Schwartz is also a VERY, VERY kind person. (If you've ever met Dr. T, Dr. Schwartz is warm like Dr. T. He made my son feel very comfortable which meant a lot to me. After five minutes with him, I felt as if I had known him for a long time. He doesn't speak like a doctor, but like an equal. He wanted me to completely understand all he was doing and to be involved as much as possible. He answered all our questions in terms I could understand. His knowledge and experience alone made it worth the trip to see him. Dr. Schwartz as well has a wonderful assistant that is right by his side during the ART testing. She is extremely intelligent as well and very, very helpful. We spent 1 1/2 hours with her and Dr. Schwartz and then another hour with her afterwards as she further explained everything to me and told me what I was to do. So we were there a total of 2 1/2 hours! What doctor spends that kind of time with you? (Though I will say my son's case is complicated and did require more time than most might.) His assistant is also very organized which was a big help to me. She has called me twice to answer questions since the visit. She as well has two PANDAS/lyme/autistic children, so she understands stands all I have gone through (though my son is not autistic). She fully understands OCD. I will post again later as we have not started everything the doctor has ordered yet (waiting to get some things in the mail). But even with what we have started, my son seems to be showing some improvement. Hoping to have lots of good things to post soon. The only thing negative I can say is that his supplements are expensive. Not over-priced, but expensive, as they are of a high quality. Some are specifically formulated by Dr. Klinghardt. Dr. Schwartz's meds as well are not necessarily typical. For instance, one of the meds for parasites is from a compounding pharmacy near Dr. Klinghardt. So you may have to check that your drug plan will cover it. We did not question anything he suggested because my son is 16 and has been sick a long time. We didn't want to delay anything that might help in his recovery. But I think Dr. Schwartz would be very understanding of the financial side and would suggested the most important things first, if money is an issue. Dr. Schwartz's fees are very reasonable. Ladyjane -- Just wanted to mention that you might want to call and tell them you'd like to take a cancellation. My son got in sooner that way. Mention how sick your child is so they give a cancellation to you before another less-sick person.
  7. If your child is in a crisis, and you can't get through, I would e-mail and flag it as high priority. He usually checks his e-mail often. He will usually try hard to reply, if it is important (even on weekends). Try to keep the e-mail short and direct. But otherwise, you will have to set up an appointment. He is swamped with patients.
  8. I'm sure you probably already know this, but Fed Ed. will pick the sample up at your house for no extra charge. You just call them and set up a pick-up time.
  9. So happy for your son, Nancy! Your posts are a great encouragement to me.
  10. I was told that I can get my son in much sooner with one of Dr. Horowitz's assistants than I can with him. Has anyone done this? Did you wish you had waited to actually get in with Dr. Horowitz himself? Thank you!
  11. I have an apponitment with Dr. Marc Schwartz of Jenkintown, PA for KPU/heavy metals/lyme treatment for my son. He teaches at the Klinghardt Academy. I was wondering if anyone has gone to him and what your experience was? Thank you!
  12. I was hoping someone else would reply, but I'll give it a try. Gene 1: DRB1: 03, DQB1: 02, DRB3: 01, DRB4 (nothing) , DRB 5 (nothing) -- this combination is not on the chart at all, so I would guess it is insignificant??? Gene 2: DRB1: 08, DQB1: 04, DRB3: (nothing), DRB 4 (nothing), DRB5 (nothing) -- this points to "no recognized significance" on the chart Not sure if this is right. Hope someone else chimes in.
  13. That's OK. I really do appreciate everyone's input and opinion. The high C4a may be elevated from strep or mycoplasma, and I am keeping that in the back of my mind. I don't want to just assume it is high from mold or lyme.
  14. Just wanted to update this thread with more information. The Labcorp TGF-B1 test number is 905036 as given on the Shoemaker "surviving mold" website. I thought it was incorrect because it doesn't show up on the LabCorp website as a valid test number. My local hospital told me tests that are sent out from LabCorp to other labs do no show up on LabCorp's public website. So the test number was actually valid, I just didn't know it. The hospital was able to look the test up on their computer. For me, it was profitable to go through LabCorp for this test because my local Quest does not do this test. So they would have had to send my son's blood from the local PA Quest to the Baltimore Quest. The Balitmore Quest would then have sent the blood out to the Cambridge lab. So it would have required more unnecessary movement of my son's blood plus would have raised billing issues. Both LabCorp and Quest send the blood to the Cambridge lab.
  15. No, not yet anyway. Still waiting for all results to come back.
  16. Oh, believe me I'm not ruling out strep or mycoplasma. Just not willing to stop there either, which is why I'm pursuing, mold, lyme, kpu, etc. My son was on antibiotics for a year with little change. He is off antibiotics right now because I felt his system needed a short break.
  17. My son's "Shoemaker" tests are coming back and here are the results (plus the results of a few other tests). KPU -- positive (30) DNASE -- high (960) ASO -- normal Mycoplasma -- slightly high C4a -- high (8000+); C3a -- normal MTHFR -- "a single copy of the C677T mutation" HLA DR -- "mold susceptible" from one parent MMP-9 -- normal ACTH -- high (80.1) cortisol -- normal (not sure if this test was run correctly, may have to re-do it) My question is about the ACTH result? Shouldn't it be low if there are problems with mold? What does high ACTH mean? Dr. T suggested that the high ACTH may be causing my son's OCD. He said that ACTH is closely related to MSH and that MSH problems can cause OCD. Also, the only thing that has ever really helped my son significantly (though only temporarily) were steroids. And steroids reduce ACTH. Which would explain why my son gets relief on steroids but nothing else. But what is causing the high ACTH? Mold? Dr. T suggested that although ACTH is normally low in mold patients, this would be at the more chronic stage that Dr. Shoemaker usually sees. In other words, my son may have mold problems, but it is only in the early stages so the ACTH isn't being lowered yet. Has anyone's child had a high ACTH? What did you doctor say about it? Still waiting for results from MSH, VIP, TGF-B1, VEGF, and CRP. Thank you!
  18. JuliaFaith--Thank you for your long reply. Very helpful information. I will look into all all the things you mentioned.
  19. Philamom, here's the link for the chart: http://www.survivingmold.com/diagnosis/lab-tests And here's the instructions to decode the number: Instructions for Using the Rosetta Stone for HLA DR by PCR • On a lab report, there are five categories of results. Each patient has two sets of three alleles, unless DRB1 is 1, 8, or 10. Those will only have a DQ, and no DRB 3, 4, or 5. Everyone else will have a DQ and one other allele from DRB 3, 4, or 5. • You only use the first two numbers from each line of the report. • If there is one entry, instead of two, the patient is homozygous for that allele. • The categories are translated: – DRB1 = B1 – DQ = DQ – DRB3 = 52A, 52B, or 52C – In DRB3, 01 is A, 02 is B, and 03 is C. – DRB4 = 53 – DRB5 = 51 – In DRB1, if the first two numbers are 03, rewrite it as 17. Your 7/3/53 was very similar to my son's -- mold susceptible. He also had one normal gene.
  20. Thank you JuliaFaith. So my interpretation was correct--one gene for mold, one gene normal? Does this rule out chronic lyme? Also, I was wondering if by mold you mean specifically "black mold" (i.e. toxic mold). Or should I be eliminating all mold? And how do you know the difference? What do you use to detox? Is it effective? Are the natural detox things like chorella as effective as Cholestyramine? Who is your doctor? OK, I guess I reached my limit of questions for one post
  21. Here are my son's results on his HLA DR. I'm not sure how to interpret. Can someone please help? DRB1*07:01 DRB1*08:01 DQB1*02:SS DQB1*04:BD DRB3*- DRB3*- DRB4*01:ARYE DRB4*- DRB5*- DRB5*- This is what I think it is showing based on this chart: http://www.survivingmold.com/diagnosis/lab-tests Genes from parent 1 (probably me): DRB1: 07 DQ: 02 DRB3: --- DRB4: 01 (translates to 53 on the chart) DRB5: --- From the chart this means to me: Mold susceptible Genes from parent 2: DRB1: 08 DQ: 04 DRB3: --- DRB4: --- DRB5: --- From the chart this means to me: no recognized significance
  22. I read this article today and thought it might apply to my son. It is called "Disorders of Tryptophan Metabolism:" http://www.associatedcontent.com/article/2729975/disorders_of_tryptophan_metabolism.html?cat=5 My son's tryptophan was high on his recent amino acids test. He is also has a single C667T MTHFR mutation. Here is the part of the article that interested me: Acute Intermittent Porphyria In this disease there are psychiatric symptoms. It seems that a key enzyme in the metabolism of tryptophan is low in this disease. This causes tryptophan to accumulate in the brain and cause psychiatric symptoms. Tryptophan pyrrolase breaks down tryptophan in the kynurenine pathway, which is the main pathway of tryptophan metabolism. Another pathway leads to serotonin. There is no deficiency of serotonin in this disease. A factor that is low in porphyria is required by this enzyme. Porphyria is treated by heme, which is the factor. I was wondering if anyone has had this test done, which lab ran it, and did it give you meaningful information. Thank you!
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