justinekno

We got three no's - our pediatrician, integrative dr, and LLMD (wow, we have alot of dr's!) regarding the vaccine. We have not run into flu vaccines being mandated here. We also do Vitamins D & C and wash hands ALOT. We try to eat alot of fruit and vegis, exercise daily and avoid late nights.

Silly question but what is the best way to test for mold allergies? I have a lab slip for blood work but I'm not sure if it's for a specific type of mold only.

Does anyone have information on muscle testing or maybe suggestions on where to look to get educated on it? Even though the concept intrigues me, I would like to have a better understanding of how it works. I read through a couple of posts on the board about it but I'm trying find more detailed information.

Wow that's a lot of vitamin c! Another reason I asked was because it seems like when I give my son vitamin c, his eye tic seems to be more active. Trying to figure out if that's truly the vitamin C or my crazy imagination once again. He is only taking 250mg a day.

I'm curious to see what people's experiences are with Vitamin C. It seems like there are different schools of thought on whether or not it is helpful for people with Lyme. I haven't directly asked our LLMD although he hasn't said to stop taking it either. I will plan to ask at our next appt but thought I would ask for experiences.

It is scary but you are doing all the right things. Your son will definitely thank you some day. Just keep doing what you're doing. I'll be praying for you and your family.

I recently had my cortisol levels checked (along with other thryoid testing) by our integrative MD. This was done through a blood test where I had to fast after midnight and have blood taken at 8:00AM and then go back at 4:00PM (I could eat in between this time) and have blood taken again. My cortisol AM levels were low amd the PM ones were normal. My dr said that your cortisol levels are like a gas tank where they should be full in the morning and slowly go down throughout the course of the day. She asked if I was overly tired in the morning, which I am. She says that this suggests I am not getting enough good sleep and she said I could try Melatonin but she first suggested yoga since I have noticed that I sleep better when I exercise daily. So far - so good There was no mention of any kind of "medication" being needed. Also, just to give you an idea of our experience with our LLMD, he is very sensitive to costs and will check a test for insurance coverage before sending us on our way to have it done. He hasn't ordered a ton of tests (although we came to his office with so many lab results that he didn't really need to!) but he has been very up front about the costs. I think any good dr should be sensitive to money issues, especially in this economic climate.

Melinda, Thank you for posting your story. We are at 3 months of treatment and so it's nice to hear some encouraging news. I'm so glad your daughter is doing better.

That is wonderful news that you heard today! I am so happy for you and your family.

I put it in about 4 oz of OJ in the morning and then cranberry juice in the evening. It's really hard to stir because it clumps together so I stir it with the handle of a wooden spoon (a spoon just wasn't doing the trick not to mention that sound was sending chills up my spine - like nails on the chalkboard!). Then my son drinks it really fast! He's a trooper but I think he knows it helps to keep him regular so he just drinks it. Thank you! How's the taste?

It's called Tru-Fiber. I buy it at our LLMD's office but they have a website too (not sure if you can order off of it though). www.trufiber.net. The stuff works like a charm! It's recommended to take with Theralac probiotics or any high potency probiotic which we do.

We do antibiotics before school and charcoal after school at 3. We then do antibiotics again at 6 with dinner and then probiotics and boulardii at bedtime (8:00). Our LLMD said probiotics work better when given last thing at night. Two days a week my son doesn't get home until 4:30 so we skip the charcoal on those days. We do a fiber drink twice a day too which also helps with detox. He takes that in the AM and at bedtime.

When you say substance, what does that mean? I find this concept very interesting but know little about it.

I was getting the pain in one of my toes and stopped the doxy thinking it could be ligament issues which I know some antibiotics can cause. I'm not sure if doxy is one of those. My toe pain did stop but then again, if it was herxing and I stopped the doxy, it could be either. Hmmm.

Did you have to appeal or just make many many calls? Do you by any chance still have your explanation of benefits to see what coding they used? Aetna read me their procedure for when a modifier code is used and it basically tells them to revert back to the procedure they use when the same service is done twice which is to only reimburse for one. Drives me crazy! Yes, after many calls explaining to them that if was two distinct tests, they covered. We had the Igenex testing done on my dd in July, and again in Sept, and on myself in November.

Did you have any problems with aetna paying for both Igg and igm? I even resubmitted with modifier code and they still would only pay for igg and not igm.

Does anyone know where this book can be purchased?

I have never heard of her but we went through a similiar situation with our current LLMD where I wanted some feedback on his experience (he too had some experience with Dr. J). I emailed ILADS and they were able to tell me a little about him and I also posted on Lymenet for people to PM if they had heard of him. I got alot of great feedback which helped make me feel better. Did you receive the name from ILADS?

Has anyone used for Lyme? My son's liver enzymes are slightly elevated and I am concerned because my husband has liver disease (non alcohol related - autoimmune) so this scares me. Our LLMD consulted with a well known LLMD and the general consensus is that the elevated enzymes are due to bone growth. I did see bone growth as being a reason when I researched earlier. All of his other liver numbers and other bloodwork (CBC) was normal so the dr's are not concerned. He was off of the antibiotics for 4 days prior to the test and the dr doesn't feel that zith and bactrim would cause the elevation. I read that zith can but the nurse at his office said that is usually with long term (years) of use. I am just not comfortable putting him back on the antibiotics but if the elevation is due to bone growth or detox (we've done none) then going off antibiotics won't make a difference. Our LLMD suggested using the glutathione as a detox. I'm wondering if we can use it but without the antibiotics. My son has had a rash on his arms and face the entire time he has been on antibiotics and now it is going away. I don't know how that is related but it must be somehow.

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I had Lyme 4 years before my son was born. I had the classic bulls eye rash and was treated with Doxy for 10 days . My son recently tested positive with IGenex (one band shy of CDC positive for both igg and igm). He is currently being treated but I have somewhat put my own testing and treatment on hold for now. I do have an integrative dr who is treating me with supplements and also testing me for thyroid issues but when I look at the questionaire in our LLMD's office, I have so many of the symptoms. We do not know if my son has congenital Lyme or not. We live in CT (where the deer would come to my mother in law's front door to eat the holly bush which we thought was so cute - ugh) and spend summers on the Cape so he could just as easily have picked it up too.

I can't really add much to these results other than I think the Bun test measure hydration. My son's was abnormal and Dr. B. said it was due to dehydration. Also, from our personal experience, Dr. B's office won't go over any bloodwork over the phone. Their policy seems to be all labs are discussed at the visit. I think if you asked, they would tell you that you should come there. I think it's good to get the perspective of an immunologist and Dr. B is getting more and more familiar with Lyme so he could help point you in the right direction.

I was reading through some of the detox recommendations and have to admit this is a little overwhelming. We are only one month into our Lyme treatment for my son and haven't really done any official detox. In the interest of starting out small, can anyone recommend a couple of good "beginner" detox products? We are seeing our LLMD for our second appt next week so I would like to be a little educated when I talk to him about detox options.

Thank you for posting this. Quite informative.

Did anyone have metal testing recommended by their LLMD? If so, what company did you use and how were the results?