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Everything posted by jjl

  1. 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
  2. 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
  3. Thanks, we did try some baking soda and water and that seemed to help a little. John L
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. Thank you for the replies. We will try them. John L
  13. 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
  14. 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
  15. 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
  16. Thanks Michael. I will look into the Nrf2. Have you ever tried the Systemic Enzyme Therapy (SET) as mentioned in the Top 10 Lyme Treatments. This book indicates several good properties of SET, one being anti-inflammation. But the book is older and I am curious to see if people have had success with this therapy over the years or if it never really helped. John L
  17. I am trying to find out what everyone is using to combat inflammation. If you are using natural anti-inflammatories, can you please list what they are and which one you think is most beneficial. Since inflammation is a big player in lyme, it is beneficial to know what everyone is having success with. Any info is appreciated. Thanks, John L ***** Thank you to all that replied. This is good information. Happy New Year and best wishes for good health for all in 2012! John L
  18. tpotter: I am confused by your statement "We did the IV abx, because he was extremely sick at that time (spleen enlarged, wbc low, liver elevated, very high ASO titers.)" I thought that you were not suppose to do aggressive treatments like IV abx if any of the blood work was out of range? Of course, I have read that some LLMDs favor IV abx for neuro lyme because they need to be more aggressive with that. I just thought you couldn't do IV abx when your body is stressed (ie. out of range markers)? I'd be curious to hear what you were told bc we are considering IV abx. Also, what type of symptoms did you see that are related to spleen and liver? One last question, did your son ever have an allergic reaction to oral Flagyl or Zith before trying IV? Pretty scary stuff. I am happy you resolved everything. Thanks, John L Actually, I don't regret doing them, because it was the IV cleocin that actually confirmed for us that we were dealing with bartonella on top of everything else (the stretch marks faded dramatically, but didn't go away completely...he'd had these stretch marks for several years.) Because of that, we tested him with Igenex for co-infections, and Erlichiosis finally came back positive (and the symptoms were a direct match with many of his more severe physical symptoms.) We are also assuming that there is babesia, because of the spleen, liver and white blood cell symptoms. We wouldn't have known any of this (and I was ready to d/c treatment for lyme, because I wasn't seeing results, and wasn't certain anyway that it was lyme or co-infections...the WB only had 1 positive IgG band.) We did the IV abx, because he was extremely sick at that time (spleen enlarged, wbc low, liver elevated, very high ASO titers.) It was actually the allergic reaction to azith and flaggyl as IV abx that he had. We had started him on the IV cleocin for the strep infection, but when the stretch marks started fading, I called the LLMD, and he said that if we could, see if we could extend the tx (IV abx was approved because of the spleen, strep and liver by a local dr.) and add azith. We tried, and he immediately had difficulty breathing. Had to stop immediately, and give benedryl. We waited a few days, and tried flaggyl (at the suggestion of the LLMD), on the 2nd day, he had a huge red hive on his throat, and then severe difficulty breathing. Went to the ER for that one. Again, had to stop Kept going a few more days with cleocin, then stopped. He did a total of 7 weeks of IV abx, and I do think it made a definite difference. If we could have not had the reactions to azith and flaggyl, we'd probably be home free by now, but we are still fighting the co-infections (at least bartonella, and possibly the other 2 as well.) And, we are stuck using oral abx again, but can't even use azith or flaggyl (which are a big deal in bart treatment.) So, no, I don't regret doing it, and I'm sure I would try again if I didn't know what was going to happen, but I just wanted to warn you that it's pretty heavy duty. I know that it's terribly frustrating, and money is getting horribly tight for most of us, but personally, I would get my son the treatments he needs at this point, and then just fight the daylights out of the insurance company. Also, as someone else mentioned, if you get it done at a large hospital, they will set up a payment plan for you.
  19. Laura, Loved your post and happy for your progress. May I ask which viruses you treated and what treatments you used? I think our two boys need to address viruses and I look forward to hearing how you treated them. Thanks, John L
  20. Michael, The problem is standing water in any type washer, but it is worse in front loaders. We had a top loader and I could not believe how much mold there was. I researched the different types and bought a new top loader. I could have tried the shock treatment, but our mold issue was so bad, I just decided to go with a new washer and use the Technofresh from day one. I never would have guessed that the washer is a hidden mold source but it is so obvious when you think about it. I would highly recommend technofresh or any other type of cleaner that you are comfortable with to continuously keep the washer and drain line clean. Also helps to leave the washer lid open when you are done so it can air out. John L
  21. You are welcome. I found a product called Technofresh that works great with just a little powder in the washer a couple times a week. Here is the link: http://www.technofresh.net/ There are other products on the market, but most have harsh chemicals. The good thing about going this route is that the entire tub as well as the drain line get coated preventing mold buildup everywhere. The site even has a "shock treatment" that can be used if your tub is over loaded with mold. I had no clue that a wahser could contain mold until I opened it up to replace a part and was shocked at what I saw. This is definitely something to pay attention to. John L
  22. Dawn, that is why our LLMD is recommending a Port Line which I guess is harder to mess with, although I need to learn more about it. John L
  23. All, After one yr of lyme treatment, our older son (11 yo) is still having a tough time. Things actually seem to be getting worse. Over the last yr, he has been on 4 months of Mepron, Doxy, and Zith for babesia, then switching to 7 months of Rifampin and Zith for bartonella, and overlapping Alinia for the last 4 months. We have not seen many gains at all and the symptoms are as bad or worse than a yr ago when we started. Granted our detox support has not been great and we are adding more of that, but a couple LLMDs we talked to said they would have expected more progress and certainly less negatives. Our main LLMD suggested IV abx as an alternative. The LLMD started using it 3 months ago with 16 patients and is seeing some good things. Has anyone tried IV abx for their child? If so, I would like to hear positives and negatives as well as how hard it is for you as a parent to administer on a daily basis. I know many use a picc line, but the LLMD is recommending a port line for our son because I think they said it is harder to grab and our son would probably try to yank on it. I appreciate any feedback from those of you that have tried it. We are a little nervous, but he has had a real tough time the last several months and really needs something to help him get better. I believe our protocol would be a port line with a pressure fed ball (with abx inside that). We would use IV Merrem (neuro lyme and bartonella) on M/W/F and Clindamycin on T/Th to cover all bases. Weekends off. Thanks ahead of time, John L
  24. I believe that Bactrim is a "Sulfa" drug and many are reactive/allergic to Sulfa. Our son is so we are on Rifampin. Worth talking to your doc about. John L
  25. Laura, I think she is very bright, but I did not follow her plan which requires numerous RNA formulas. At the time, her genetic testing was new and her RNA formulas were new. Also, it took a while for things to change and the results were mixed. I preferred to take the route of simple detour paths (ie. adding MB12 and folic acid) over her RNA formulas. I understand she has come a long way, but I have been out of touch for a while. Like I said this is a very very large area to understand. It is not like trying an abx or supp. This requires a thorough understanding of the pathways along with genetic testing and an understanding of what needs patched. If you want to jump in the best way is to get the testing and have Dr Yasko give you a GAR. Then you would have a big decision about whether to follow her recommendations to use her RNAs (if she still uses them) or to try other patches. Also, I believe you could just look at specific pathways if you wanted to do it a bit at a time. John L
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