MichaelTampa

Back when I was using nystatin and probiotics, I took them regularly at the same time and thought that worked just fine. I don't see why it would be a problem. The nystatin is an antifungal, the probiotics are not going to be hurt by that, nor are they going to hurt the antifungal. I got nystatin liquid from a compounding pharmacy, prepared without flavors/colors/sweeteners/etc, I thought it tasted delicious as it was.

I did some minor things for the gut before abx, but not all the serious and important stuff you listed there. This was more based on doing things as I ran into the ideas than any grand plan. It is very possible that the order you ask about would make much more sense for many people, particularly those not in a truly desperate situation of needing whatever improvements they can get ASAP. While I have been off abx for a while, I am still not healthy and gut symptoms are way up there on the list of remaining symptoms.

Great, so happy to hear this news!

I feel it has tracked my progress fairly well. I have always had failing scores though. I have run into some on other message boards with scores that went in the good range when they got better, though. I believe they are generally accurate. I have heard it is questionable for kids, particularly those younger than 13.

I would ditto what Suzan said. That sure is a lot of significant bands where there is something there.

The one I had been going to a while seemed to be of the belief of getting the load down so the body can keep it in check and keep it from being a problem, as if getting rid of all of them would be impossible. My sense is that he has a lot of company in having this perspective.

I don't know if there is a connection between fungal/yeast infections and histamine, but these anti-acid drugs work by blocking histamine receptors (H2, in the digestive tract) that are responsible for triggering acid production. So, not necessarily proton pump malfunction- And wouldn't it tend to follow that fungus does not thrive in an acidic environment? I would think that people with low acid production would be more inclined to fungal infections in the gut than would those with excess acid? To say it more bluntly, what I meant was that it is idiotic that millions of people are taking these things to reduce acid production. It is needed for food digestion. Reduction of acid is just going to make a small food digestion issue into a larger one. To prescribe these things, pretending they work by suppressing acid production, is just stupidity, however commonplace it might be. Do millions of people have proton pumps that are just malfunctioning and producing more acid that is necessary, is that what anyone really believes? These drugs happen to be antifungals, albeit weak antifungals, and I am suggesting, not my own idea but passing it on, that the pain relief they provide may relate more to the mild treatment of the real problem, the real problem being one of a fungal infection that has gone undiagnosed, a fungal infection that is feeding and thriving when people eat.

I've never had one of those rashes, but I hear frequently of them coming when new meds are introduced targeting the bartonella. It makes sense to me that this could happen also from discontinuing a bart drug, as this will change the behavior of bart on the body, maybe it will grow or move or something like that.

The short answer is lyme disease. The longer answer is that I had problems of indigestion and headaches and sore throats and anxiety/nervousness all my life, things were getting progressively worse, things got way worse during a near-drowning in 2006 where I ended up with PTSD, depression, insomnia, and throbbing foot/joint pain. I have always been sensitive to fluorescent lights and flashing lights and various chemicals and various smells and wireless signals and other EMF's. They caused a host of problems including indigestion and nightmares and diarrhea and migraines and severe fatigue and rage attacks including physical attacks (and many other things). As the biggest problems arrived following psychological trauma, much focus was on emotional healing with various talk and energy-related therapy and attempts with the very popular neuropsychiatric drug prozac, and very little progress was made. I eventually ran into a psychiatrist who noticed some of the physical "tics" that have been there on an occasional basis, but not dominated my life, and diagnosed me with Tourette's and I found this message board. Eventually PANDAS swept over this board and I considered that for me, and it appeared to explain things better, particularly with the rage attacks. I was "diagnosed" with PANDAS by Dr. Kovacevic via phone consult. A trial of abx helped a little bit but not a way lot. I'm inclined to see that more as misdiagnosis, as that attacks really seem triggered more by neurological input rather than infection, but perhaps both play a role as the world can be hard to sort out that way. Eventually I ran into lyme disease as an idea (thanks lyme mom), which has explained all of the symptoms much better than anything else, particularly when you add in bartonella and babesia. And what's more, many of the lyme treatments have had an enormous impact, which certainly gives that diagnosis more credibility. I had just a couple bands on the IGeneX western blot (41 positive one star and 39 IND, and that's it), but also a chronically low CD57, which I test periodically, and again it is still low as of a few days ago. My sensitivities are likely still there, but are very significantly reduced. I do still have chronic fatigue and pretty significant digestive issues, and perhaps those are my worst symptoms at this time.

There aren't "credible studies" to back up what anyone is doing with lyme disease these days. To me, though, Klinghardt is the only one researching new treatments. Everything that he has suggested, all of them probably quacky sounding, that I have bothered to try, have been enormously successful for me. They have got me to feeling like I am on the verge of being over this, although I am not yet. About to try another idea of his and very optimistic, although we will see. He knows about lyme from a very personal level, it has been a part of his life since childhood, and, besides trying to help people, I am sure this is why he works so hard at it. He is the furthest thing there is from a quack, despite how nonconventional his methods may appear to many. He is all about results.

Had not heard of samento and banderol for biofilm. I know cistus incanus tea and serrapeptase worked great for me. Nattokinase was okay but not nearly as powerful, and I have heard others speak more highly of serrapeptase compared to nattokinase.

Referrals from real people you know who have had real experiences are great, so hopefully someone here will chime in. But, in case nobody is in that area here having a good experience, be aware ilads.org will give you referrals for their member doctors, and there is also the lymenet.org message board which would cast a much larger net to your question.

How wonderful!

Another geeky book that talks some about methylation is "Explaining Unexplained Illness" by Martin Pall, where he proposes the nitric oxide cycle is a cause of disease (not that I necessarily agree with that). But he proposes a lot of supplements to help with that, and I think there is a little mention of using oxygen concentrator, although that helped me a lot too.

I have been using them, A-L, A-Bart, and A-Bab for Lyme, bartonella and babesia. I have also been using A-FNG for fungus/candida/yeast issues. I think they have been helping a lot but have not dealt any knockout blow (as nothing as to this point).

Is this a problem only for front loaders? Would the technofresh be recommended for top loaders as well?

I know there are plenty in the US with low vitamin D levels, but those results for your dh and kids are so very low that to me they should be considered another test that is suggestive of lyme. The symptoms and tests are all suggestive of lyme, and certainly the pattern of it all together with a bunch of people in the same family like that, it certainly looks like lyme should be seriously pursued. Note that all 3 diagnoses for you from the colonoscopies went from "we don't know why you're having problems" to "we don't know why you're having problems" to "we don't know why you're having problems", but it's good the docs had the sense of humor to keep changing the letters to make it interesting. By the way, I know I am in the minority on this, even in the lyme community, but it is not obvious to me that whether supplementing with vitamin D would be a good or bad idea for ya'all right now. I have read about evidence to suggest that lyme bugs can USE YOUR vitamin D to protect itself from your immune system, and this can be part of why so many with lyme have such very low levels. My personal experience has included many times where I had very low vitamin D levels and where my body still energy tested that it was a bad idea to supplement, despite having extremely low levels. I have so much experience with energy testing that I have come to really believe there is some reason there. Then there have been times that I have supplemented for a period, as I had energy tested that it was good, and the vitamin D levels did not change. So, really, it is not nearly that simple. Now, I really believe people with lyme won't get fully well until they get those levels up, but still, there can be a right and wrong order to try to do things.

Anal itching can be a real sign of parasites/worms. So, while yeast/fungus may be involved, you might want to consider trial treatment of parasites as well.

Those things worked only a little bit for me. What worked much better was treating the fungal infection with antifungals. I think it's much more likely that the millions of people on these things have fungal infections than it is that they have malfunctioning proton pumps.

Even if rifamping isn't an option for your son, or if you try it and for some reason it is not the answer, please understand there are still other ways to go about things. You might consider a naturopath style doctor with herbals and other supplements, at least to get things started. That gentler approach might end up being better. Have you considered other factors that can affect his health/behavior, particularly with bartonella, such as exposure to fluorescent lights or wireless signals? The regular incandescent light bulbs are being phased out, actually made illegal over a period of time starting, with 1/1/2012 for the 100 watt light bulbs. But, they are already getting much less floor space in the stores, and at some point are going to be very difficult to purchase. If you have not already considered this issue for your son, it might be time to do so.

I hear it can be useful for cancer or lyme or probably any chronic condition. I had some, along with other vitamins in the IV. I found it helpful a little bit, but not spectacular.

Before lyme treatment I was too sensitive to wireless signals to work. (The wireless signals were at work, not in my home.) There were times before I stopped trying to work that I couldn't carry on meaningful conversations, and I would forget the beginning of your sentence by the time you had finished it. I was forced back to work after one month of treatment, and that first month was absolutely horrible in terms of functioning poorly at work but trying to get by well enough, and in terms of the incredible level of fatigue I had each evening during the week, and really it took the full weekend to recover from the week. But, after two months of treatment, despite being put through one month of it while working, I was functioning much better. I did stop abx at that time, for insurance/money reasons, and did backslide slowly and restarted abx about 6 months later, and things see-sawed for a while. Now 18 months after I started treatment, I have been off abx now for 5 months and have not been backsliding, nor am I perfectly healed, and nor am I without significant treatment, I am just without abx as a treatment, mainly because I cannot tolerate the abx anymore.

If there is adrenal/thyroid fatigue, at some point hormones may need to be addressed. I was prescribed hydrocortisone, but have not taken it, always energy testing bad for it. My pregnenolone, a master hormone that gets turned into cortisol or testosterone or estrogen etc as the body deems fit, was also extremely low, and I am taking some of that, low amounts that energy test good, and energy is improving slightly/slowly. Before going on pregnenolone, I did try other adrenal things to help energy, the herbals like licorice extract and a couple others. They helped with energy a lot but then after a week or so I crashed as I slowly did not test for them anymore. My conclusion is these things are important but tricky and addressing with care is appropriate.

I have been a vegan for many years and stay strict with that. On other dietary changes, like avoiding sugar, I am strict at home, but then at the restaurants once a week, I am sure they are putting sugar in things, so in that sense I am not strict.

We have a chinese herbalist in our part of town. Not a lyme doc, but someone who really specializes in treating everything with chinese herbs. I know a couple people who have gone to him (not for lyme, though), he is much cheaper than an LLMD is, I can assure you of that. But, I have not gone to him.