justinekno

When our lab doesn't run the test themselves, I always notice on the results page that it will say, "performed at ______ lab" so I always assumed if they don't run it in-house, they outsource it so i would think that any lab should be able to draw the blood and ship it out to a partner lab?

I'm going to have my older non-PANDAS child watch it so that he can become more familiar with it. He is away at college all year so he's not living the life of PANDAS like we are at home. I don't think I will have my PANDAS son watch it because it might make him more anxious. I don't know, I guess I need to watch it first before I make a true decision.

no, but we use the white pills.

We use it for symptoms related to herxing but I believe it acts similiar to bentonite clay in that it captures the toxins in the body.

We have our first appt with a Lyme knowledgeable dr that does work somewhat with Dr. Jones so I am trying to get educated before the appt. Thanks for this info.

Okay, here's a silly question. What is the difference in Chronic versus Acute Lyme?

My son is also on zithromax and has been tolerating it. We use a probiotic (MindLinx - dairy free) twice a day and S. Boulardii (twice a day) too. Our dr also has my son taking Activated Charcoal as needed.

Okay, now I'm really confused! I thought the CD57 was the marker in the Lyme world? Unfortunately, my son and I are both just starting to head down the Lyme path so I recently had the CD57 done for myself. Since the CD57 isn't used for kids, I am intrigued to find out if the C3D can be used in the same manner for kids. My son hasn't had the C3D test done.

The ANA (Antinuclear Antibody test) I was referring to is the one that is a screening test for some autoimmune diseases. I've attached the link but not sure if I did it correctly http://www.labtestsonline.org/understandin...s/ana/test.html

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In reading the definition, it seems like if you've already had the ANA test done, which I see some people (ourselves included) on this board have had done, then you wouldn't need the C3D test done?

This reminds me of my older son (non-PANDAS) who had a heart murmur while I was pregnant with him. I was monitored overnight, as a precaution, and told by the dr at the hospital that most babies in utero have a heart murmur at some point but it's just a matter of the timing of it happening during an ob dr visit. I wonder if that's the case with the general public. The murmur was never heard again and 17 years later when he had some extensive heart monitoring done, (he was fainting which turned out to be related to low blood pressure but dr wanted to rule out heart problems) everything showed up fine.

I definitely agree with this. We have done extensive testing, blood, stool and urine, to have a better understanding of my son's deficiencies/needs. All of our supplement use is guided through our dr. I recommend the book by Kenneth Bock, "Healing the Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders". It was very helpful as I was trying to figure out what direction we needed to go in. I would take it to my son's dr's appt and reference parts of it to our dr. He would then help me decide if the particular test or supplement was needed for my son.

It did not burn his skin but there is a "heat" sensation when you first put it on but the bottle says that is to be expected. I just made sure I got the oil only on the wart and not the rest of the area then we would quickly cover it with a bandaid to prevent it from running.

My ds(10) is on zithromax also and takes the following: probiotics - twice a day. Mind Linx brand (dairy free) S. Boulardii (good yeast) Vit C & D - immune system B-6 - tics, anxiety, helps absorb Magnesium Magnesium - tics, anxiety Enzymes - twice daily MB12 - focus, energy Folinic Acid - help absorb MB12 Zinc - for low zinc levels This is what we do for now but we have an appt next week with an immunologist to review labwork so this list may change somewhat.

I don't have much to add but wanted to tell you that I hope you're feeling better soon. As far as supplements, we always up the Vitamin C and D when feeling lousy. Maybe try some Oil of Oregano that Stephanie recommended on my post about warts? She used it this weekend for a stomach flu and said it helped.

Thank you so much for the initial suggestion. It will definitely be a staple in our medicine cabinet from now on!

A couple of weeks ago I posted about my son's warts. We used the Oil of Oregano and applied it topically for about 2 weeks (not every night but most nights). We applied the oil at night and kept them covered overnight only. I am happy to say that they are now GONE! It was truly amazing stuff! Other than smelling like a salad dressing it was a fairly easy treatment. Once again, this board came through with ideas! Thank you!

I think you have to give yourself a huge amount of credit here for perservering and not giving up. I'm so glad you are making such great progress. I wish your son the best with his upcoming surgery.

It didn't really tell me anything differently than what I already knew from the email they sent earlier. It was a handwritten note outlining the results. She did include the article, "Mimicry and autobody-mediated neuronal cell signaling in Sydeham Chorea" which I hadn't seen so that was helpful.

I received the packet in the mail today.

I haven't received anything in the mail either. I will post if I do.

I made the appt through the receptionist but initally she asked to call me back and when I didn't hear back in a few hours, I called again. She said they are extrememly busy right now with calls and apologized for not getting back to me sooner.

We have an appt in a couple of weeks with Dr. B. This will be my son's first appt with him. For those who have seen Dr. B., did you do anything special in terms of providing info/lab results to him prior to the first visit? I am wondering if he is receptive to an email ahead of time with all of the information and if he responds.

Was your daughter already on antibiotics when she did the tests? My son was on antibiotics when we did the western blot (cdc) and he was positive onlt for the 41 band. I'm wondering if the antibiotics impacted his result. We had herxing while on zithromax and now we're thinking we have some lyme-like disease going on as well as PANDAS.