philamom

Okay, I now have the actual test results in front of me. It seems the Complement C3a & C4a were not done through the jewish lab (arrgh). But, I'm thinking since the C4A is low (180), this is not necessarily screaming mold to me, and the low level MSH points to inflammation...right?? The only comments noted on the results are: 1) HLA- In the context of a transplant, LabCorp strongly urges timely consultation with an HLA knowledgable transplant physician. 2) Melanocyte Stimulating Hormone- 32 Critical (written in red)...but the reference interval is 0-40. And not really sure what to make of the increased TGF? My dd has no asthma or lung issues. How does one go about getting tested for Marcons? That's the really deep nasal culture - right? ~thx

Ditto for the like button...so happy for you!

These are just my notes on the LabCorp sheet: -TGF-b1 affects the lungs and a gluten-free diet is recommended until numbers are lowered. (My son's was 9860 and he is being treated for 2 pneumonias in his lungs) -MSH----MaRCONS can destroy this. Dr. S says if this is below 35 and C4a is less than 20,000 you need a ERMI '2' or lower score on mold test -VIP----Inflammation develops in periphery (not brain) could result in inflammation that is attached to production of regulatory harmones - MSH, VIP Hope you have a good doctor to discuss these results. My dr. actually had a phone consult with Dr. Shoemaker about some of the test results (may have been the DNA part). DS is on 3rd month of MaRCONS spray (BEG spray-with positive deep nasal culture) and on 2nd month of VIP spray along with many other remediations for mold removal/remodel in our home. We found a bit of mold but not much and we are almost done. There were some questionable yellow dots on the back of a painting that had spent 3 yrs. in S. AFrica. Best wishes on treatment! Julia- I'm away with limited internet service. I do not have the results in front of me--only received some information via hubby. He said the C3/C4 was normal but not sure if it was done by the Jewish Lab until I see a copy. The C3A is 115.2 and C4A is 180.4. I do not have a doctor familar with any of this. I just asked asked a physician to sign off on the lab sheet. Lab Corp said the results go to Shoemaker's office. I asked for a copy as well at the time of the blood draw. I was really hoping all this would be negative! When I get home I plan to run the ERMI test and the KPU urine test. Two other results are creative protein at .3 and ACTH at 20.5 (both normal I think). I also got the results of the HLA but my hubby couldn't understand it...but we already know she is HLA DR4 positive from Dr. J. thx

Just received some of my daughter's Shoemaker lab results from Lab Corp: TGF Beta-1 (Transforming Growth Factor) is 5260. Normal range is <2380. *TGF Beta-1 can impair T-regulatory cell function, which in turn contibutes to the activation of autoimmunity, yet TGF Beta-1 also plays a role in suppressing autoimmunity(!). MSH (Melanocyte Stimulating Hormone) is 32. It says Critical... even though Ref Range is 35-81. VIP (Vasoactive Intestinal Polypeptide) is 21.1. Normal range is 23-63. Can anyone give me their thoughts on this.

I think you're right. Hope you feel better!

I pulled this from Neuropsychiatric Assesment by Dr. R BR: Burning is quite specific to NPLD (Neuropsychiatric Lyme Disease), but is also seen in herpes infections. The patient describes a sensation that a blowtorch is burning the skin. It can affect any part of the body. In some patients the burning migrates, while in others it remains in a given area. Both antibiotics and anticonvulsants relieve this symptom.

momaine- Isn't it the opposite--Doxy is stronger than Minocycline (Minocin)? Wilma- my dd has been taking Minocin (50mg) daily since December. Even though there is less sun sensitivity than doxy, do take caution when in the sun for long periods. Don't forget the sunscreen.

I've been in touch with a family whose daughter was in Rogers for inpatient treatment. They were very happy with her treatment. They worked with a Psychiatrist (Dr. Stephanie Eken) who understood PANDAS. I think they also did some of the family therapy via webcam. It's been a while since we spoke, but I would be happy to reach out to her if you would be interested. I don't believe she is on the forum. Melinda

Yes, and unfortunately, lyme treatment can be a slow process. Good luck with the Minocin!

Does anyone know if the tick twister shown in this video is still available? Anyone own one? It looks so easy to use. thx

Michael- yes, it's because of the way it was set up with my husband's employer. But, it is funny how my CD57 is not covered with Aetna and you have no problem. Jodie- I think it's exercise physiology - not PT, but I'll ask again. I will be stopping in on Tuesday to pick up something. thx

sptcmom- I asked them if there was any other avenue they could bill it under, but they said no. They were suprised my insurance (Aetna) didn't cover chiropractor, but it's the plan that my husband gets through work. I think most with Aetna have some sort of coverage. I will inquire again...thanks for the suggestions.

tpotter- I like the practitioner that I see for ART. He spends a good amount of quality time with you and is very thorough. I think Jodie has met him before. He is not treating my daughter though. I was originally told my office visits would be covered, but found out at my first appt. that my insurance does not cover any chiropracter care. So unfortunately, I don't know how much longer I'll be able to continue. His price per visit (after the initial consult) is only $75, but along with the supplements - it adds up. He did spend over an hour with me last visit (second appt) and it included a small massage with a therapist (if you choose) which felt really nice. So it was well worth the $75. And I do feel good! If only my insurance covered chiropractor . Anyway, if you decide you may want to book an appt. with him, there is a waiting list for the initial consult (does them on certain days) and then it is easy to schedule follow-up visits.

I'm sure there was an overwhelming amount of questions asked, and unfortunately, not enough time to address them. I wish they would have extended the discussion.

For anyone who missed this, there will be a full transcript of the discussion posted at mcall.com/healthchat shortly.

bumping themorningcall.com

Ok - thanks!

Are you giving your daughter the Lutimax to help with OCD?

I don't have any experience with Babesia treatment, but I think Mepron (anti-malaria drug) is usually used, combined with antibiotics. I'm sure others will chime in.

Nebulizer/vaporizer was thru Bee Healthy Farms at www.beehealthyfarms.com We are using the BioPure salmon oil but tried another top-of-the-line brand that did not test well. Dr. recommended and I just ordered some from another company located in Bellingham, WA, called Vital Choice. They were 1/2 the price not including $5/shipping per bottle (not sure if the dosage is the same). You may be able to punture the capsule and add it to your son's food. My son is 13 so not sure what your son's dosage would be. Thanks for posting the site. I'm taking the alcohol free Propolis Extract. Now I know where I can order it from.

Here is the one on Children's Education - if anyone is interested. The issues cost $10 each (the issue includes what's listed below). Lyme Times Children's Education Issue #45 A Family Doctor's Perspective on Tick-Borne Diseases in Children Partners in Education Leaping Lizards & Menacing Mice A Summary of Good Communication Skills The Homeschooling Option From Public School to Homeschooling 504, IDEA, IEPs Advocating for Your Child as Part of a Team Neuropsychological Testing Cognitive impairment in Lyme Disease Centers for Disease Control Study The Treatment of Lyme Disease & Child Protective Services Teenagers with Lyme Bibliography of Lyme Disease Studies in Children Lyme Disease in the Schools Value of In-Service Training in IEPs and 504 Plans Lyme Disease Is No Fun: Let's Get Well Lyme Disease Education Field Trip Notification Lyme Disease Research Center at Columbia Lyme AID 4 Kids About CALDA | Contact Us | Website Policies | Donate Now | Join Calda | © CALDA

Here is what you get for $10 dollars...all in one issue. It can't hurt to have on hand. I think I'm going to order a copy - just in case. There's also another issue on children's rights with education (IEP,exc.). Lyme Times Insurance Issue #39/40 Two Standards of Care Choosing, Using & Losing Insurance Formularies Sources of Your Health Care Coverage & the Relationship to Your Rights Best of Class - Arguments & Rebuttals for Insurance Denials The Game PLan Insurance Documentation Form Letters Appeal: SPECT Scan Denial based on Medical Necessity Independent Medical Reviews Using URAC To Curb Denials & Appeal Claims How to Represent Yourself in Court FAQ The Treatment of Persistent Lyme Disease CALDA Lyme Times

Home > Health Live Health Chat THIS FRIDAY: Lyme Disease chat with Dr. Lawrence Zemel and Dr. Daniel Cameron Share19 Comments 0 July 1, 2011 Chronic Lyme disease: Does it exist and should it be treated with long-term antibiotics? Join us for a live chat Friday, July 1 at noon EST (11 am CST, 10 am MST, 9 am PST) about Lyme disease, including the controversial issue of whether patients should be treated with long-term antibiotics for chronic Lyme disease. Morning Call health reporter Milton D. Carrero will chat with representatives from the two main organizations managing the treatment of Lyme disease in the United States. Dr. Lawrence Zemel of the Infectious Diseases Society of America and Dr. Daniel Cameron from the International Lyme and Associated Diseases Society will answer your questions. Send questions in advance to milton.carrero@mcall.com. Dr. Lawrence Zemel is Chief of the Division of Rheumatology at the CT Children's Medical Center and Professor of Pediatrics at the University of Connecticut. Dr. Zemel is a graduate of New York's Brooklyn College and SUNY Buffalo followed by residency at Buffalo's Children's Hospital and fellowships at Tufts-New England Medical Center and Boston Children's Hospital. Dr. Zemel, works in the field of Pediatric Rheumatology and Pediatrics, and has expertise in multiple areas, including Lyme Disease, Antiphospholipid Syndrome (APS) and Juvenile Rheumatoid Arthritis. Dr. Daniel Cameron graduated from the University of Minnesota School of Medicine and Public Health followed by residencies at Beth Israel Medical Center and Mt. Sinai School of Medicine in New York. Dr. Cameron is widely recognized for conducting epidemiologic research while practicing medicine. He has been viewed as a pioneer in Lyme disease as an author of practice guidelines, analytic reviews, and clinical trials. He currently sees patients in his private practice in Mt. Kisco, New York while continuing his research and writing. He maintains the website LymeProject.com. themorningcall.com [info. on bottom right corner]

Nancy- there is a comprehensive guide to fighting Insurance Co. produced by CALDA (California Lyme Disease Association) for $10. It's the Lyme Times Insurance issue #39/40.

Thanks for posting. This segment was recently aired on Nightly World News.