jjl

Cobbie, We had an IV Port line installed in our son and he used IV abx for 6 months, including Rocephin. The port is much much less susceptible to infection and no issue with the child messing with it, but it does require surgery to install. Another plus is that a port can be left in for 2 or 3 years if need be. On the hypoperfusion, you may want to consider HBOT. That is a great way to mitigate hypoperfusion. I do not frequent the boards that much. You can pm me if you would like more info. I would appreciate a copy of the Columbia study also. Thanks, John L

Not sure why the bubbling with belching. Yeast maybe? Can you discuss with the DR about this? Are you still doing the biofilm protocol ( for 5 months?). Allie, yes we are still doing the biofilm protocol, but the doctor is evaluating this. We were also doing Alinia. It very well could be yeast or with the biofilm busters it could be others things. Hoping for relief soon. John L

Thanks, we did try some baking soda and water and that seemed to help a little. John L

He does have some OCD, and maybe that is part of it, but the core issue really looks like a GI issue of some type. I say this because (sorry) it sounds like bubbles coming from the stomach and is odoress (sorry again). As far as asking him, well he is minimally verbal with asd, so that is out. We do talk to him and ask him questions, but that is after he starts belching. So, it is tought to figure things out when you can't communicate with him. That's why I am trying to see if others have dealt with this sx. Thanks for your insight. John L

Random question, but does he swallow air a lot as a habit?? It is mainly belching. Some times he does swallow air and sometimes not. Two yrs ago he was doing this, it was more air swallowing than belching and he was put on 4 cycles (4 months) of Mepron for Babesia. That helped, but it has come back. Like I said though, this time it is more belching, seems to be more of a GI issue than a Babesia issue. BTW, he has been on Alinia so maybe that is hitting the Babesia and we are seeing spin off sx from that. Thank you for the question. John L

Our son had a port installed and did 6 months of IV abx tx. Now he is on a break doing natural abx for a while. You can pm me if you like. John L

Nancy, Our LLMD is quite aggressive with biofilms using Natto, Interfase+, and Wobenzym. Have not tried the Bolouke yet, but I am sure that is next. One son having a positive rx so far and the other negative. Time will tell. John L

I have heard that some say vit D can hinder lyme tx, but I have not seen any direct correlations shown regarding this. However, there are a ton of ref on the ill effects of low vit D levels. Just go to vit D council for refs. I know there is some controversy on this, but for the most part, I am seeing docs recommending vit D in their briefings. My whole fa,ily was under 20 (not good at all) and over the last few yrs we all got above 50. John L

Our son has lyme and co-infections and has been treated for 2.5 yrs with minimal success. He has several sx, but one sx, belching, has been getting worse over the last few months. I know that this can be a sx of lyme or general GI issues but I am wondering if any of you have seen this sx spike and what you have used to help reduce it. One potential reason for the increase is our start of biofilm protocols 5 months ago. I guess it's possible that breaking down the biofilm could release more bad bugs which can cause GI sx. Any thoughts or experiences are appreciated. Thanks, John L

Sorry you have to go thru this, but it sounds like you can improve your health afterwards. One thing I would say (from my own experience) is that I would not put too much into ERMI testing. I had it done and the results were questionable. When I asked detailed questions I did not get great answers. Then I looked into it more and found out that there can be inconsistent results. I had a company come to my house with a microscope to evaluate tape samples as well as air, vent, and inner wall samples (1/2 day). It was way more info than that general ERMI test and all of my questions were answered. I am sure ERMI has it's place now and will probably be a top choice in the future, but I would not put all my eggs in that basket for something this important. The company I used to compliment the ERMI was EnviroHealth Consulting and boy am I glad I did that. I truly hope you are mold free in the near future. John L

The only thing the school needs to know is that he has a chronic illness that happens to be called Lyme. They do not need to know his medications or when he is starting or stopping. It is controversial and cannot do anything but cause issues down the road. Telling them that certain meds may cause issues is inviting them to make recommendations to stop meds, and they are not qualified to do so. We are in a similar situation and the school held an IEP and forced a move to a functional class which is what you are talking about. I could have fought it with a lawyer, but I took a step back because he was not doing well with the teacher at the time. Our son lasted one day in that functional school and went into a regression. So, we made the decision to push the lyme case and request for in-home hospital care which means we qualified for in home teaching. The reason that we did this is because our lyme treatments were getting more involved with rotating combinations and our son was riding a roller coaster like all others with good days and bad days ( a lot of herxing). We did not feel that a long term ride like that would make for a good learning environment for him and of course we were only getting bad reports daily anyhow. So, we decided to take control and give him the best care we could while not exposing him to a bad teaching environment which only stressed him worse. We could have pushed for many hours a week of in home teaching, but we are very busy with his abx schedule so we decided on one hour per day, which works for him. My wife wife administers the medicine and works with him also. The 1st yr of lyme tx brought a couple key improvements, but he did not progress overall like the LLMDs thought he should. Since he has autism also and his lyme is congenital, that makes him a neuro lyme case so the docs independently recommended we try IV abx therapy. After looking into it for 3 months, we agreed and we are two months into IV treatments. That is a big commitment, but we agree with the docs that he needed that and we have heard good reports from those who have tried this route. I tell you this story because since he is on in home hospital, we have the flexibility to try all kinds of different treatments without having to talk to the school about them and without worrying about whether he will get bad behavior reports every day. The largest benefit though are that our son does not have to deal with the stress of going to school while he is undergoing daily abx treatment. In addition, he does not have to be exposed to the constant barrage of illnesses at the schools. If you don't think you can handle a daily in home schedule, then maybe you can get some help. It is difficult and you really have to be organized about how you approach it, but there are many parents out there taking this route. Not because they want to, but more because they feel it is the best route to help their children heal. School is secondary at this point for us, at least for now. Hope this gives you another perspective. Best of luck in whatever path you choose. John L

Thank you for the replies. We will try them. John L

Has anyone used Detox Footpads? If so, can you tell me what brand you used and whether you think they were helpful. Thanks, John L

Thank you for this information. Sounds very promising. Can you tell me what brand and where you purchase this herb? I appreciate it, John L

Thank you for posting this video. I was so interested that I contacted my niece, who's husband is from France. Her husband was actually able to contact the mother in the video and ask her if she is willing to chat with me. She said she is willing to chat, so I sent her a letter with some background on my family and some questions about the treatments her son received. Also, my niece's husband said that the researcher in the video is one of the most well known researchers in France as he has received the nobel prize as co-discoverer of HIV. This is important since he has now turned his sights on researching autism and lyme treatment. He received funding through ARI for a study with autism and his treatments. Here are some related links. John L http://montagnier.org/Autism-the-microbial-track http://www.nature.com/news/2010/101208/full/468743a.html