Jump to content
ACN Latitudes Forums

Christianmom

Members
 View Profile  See their activity

  • Posts

    473

  • Joined

  • Last visited

  • Days Won

    2

 Content Type 

Posts posted by Christianmom

  3. Dr. Klinghardt and Co-infections

    in PANS / PANDAS (Lyme included)

    Posted

    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.

  8. Dr. Marc Schwartz -- Jenkintown, PA

    in PANS / PANDAS (Lyme included)

    Posted

    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.

  9. current Dr T patients

    in PANS / PANDAS (Lyme included)

    Posted

    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.

  14. HLA DR testing back

    in PANS / PANDAS (Lyme included)

    Posted

    Hi - sorry I normally hang out on the PANDAS forum but was hoping someone would be kind enough to decipher my dd's HLA testing. I've been to the link and read the explanation an dthink she's ok and not susceptible but would someone in the know be good enough to confirm it for me.. just too dumb I'm afraid...

     

     

    DRB1 03:JRFR

    DRB1 08:01

     

    DQB1 02:SS

    DQB1 04:BD

     

    DRB3 01:XX

    DRB3 -

     

    DRB4 -

    DRB4 -

     

    DRB5 -

    DRB5-

     

    Thanks for any info :)

     

    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.

  16. Quick help please!

    in PANS / PANDAS (Lyme included)

    Posted

    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.

  18. ACTH test results back -- son's is high

    in PANS / PANDAS (Lyme included)

    Posted

    What makes you think there is a problem with mold?

    Your high C4a could be inflammation associated with infection-

    and you've got high strep titer, and high myco.

    Is he on antibiotics to try and bring down those infections?

    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.

  19. ACTH test results back -- son's is high

    in PANS / PANDAS (Lyme included)

    Posted

    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!

  22. HLA DR testing back

    in PANS / PANDAS (Lyme included)

    Posted · Edited by Christianmom

    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.

  23. HLA DR testing back

    in PANS / PANDAS (Lyme included)

    Posted

    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 :)

  24. HLA DR testing back

    in PANS / PANDAS (Lyme included)

    Posted · Edited by Christianmom

    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

  25. Has anyone run a porphyria test?

    in PANS / PANDAS (Lyme included)

    Posted

    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!

×
×
  • Create New...