MichaelTampa

Another thought occurs to maybe help give a sense of how bad a mold problem is. At least it gives us some information in my case. Started having acid reflux again last couple nights, preventing me from sleeping in lying down position. This problem was solved following removal of mold from bathroom, so I knew then that this acid reflux problem had mold as part of it (but not all of it, I have traveled to non-moldy places plenty and still had the problem, but that was before lyme treatment). Well, finally realized I better check the A/C filter, and it needed changing. It was 4 weeks old, but part of the 4 weeks included cleaning up from removing bedroom carpeting, so a tough 4 weeks, if you will. These are the MERV-11 filters we started using as recommended for mold, as they collect mold spores. I highly recommend them for anyone even vaguely considering whether they have a mold problem (I guess that includes really anyone who has lyme). MERV-11 is not a brand name, but more a quality, related to what size things it can and cannot catch. Anyway, if these filters are supposed to last 3 months, and last 4 weeks, that's a sign to me that we still have a problem (and I'm not surprised by that, I know we still have work to do). But, anyway, perhaps this could be another something to do, using these filters, seeing how long it takes for them to get clogged up, noticing health effects when new ones are installed, just to give some information on how moldy your home might or might not be. They are not cheap as far as filters go, don't look for them in the stores, recommend buy online to get cheaper price rather than special-ordering at a store.

For the biofilms: EDTA, cistus tea (from Biopure), GSE, garlic, silica/biosil (from Biopure), heparin, lumbrokinase (enzymes), serrapeptase (enzymes), nattokinase (enzymes, but this one has had very disappointing results), iodine, rife. Inhaling iodine can help with lung biofilm. Mouthwashing with garlic can help with mouth biofilm. He said heparin is the best. I assume for heparin he's talking IV. But he also says it can cause osteoporosis. He said lumbrokinase is second-best. He didn't mention brand name bolouke, but it is popular for some with lyme. It is made from worms, so I have stayed away from it personally (because I'm a vegan, not because I think it will cause other worm problems). He seemed really high on the cistus tea. I have ordered it and am going to get some detoxamin which is a suppository form of EDTA. On the rifing, I don't think my list has codes for biofilm, so, not sure how that will work out. I have also used zyactinase, an enzyme from kiwi, and that was helpful for a couple months in the beginning. As far as order, Dr.K. would say parasites/worms is where to start, then move on to biofilm and the rest. The more you can do the better, that is just the ideal order. In the end, you have to do some of this together--the biofilm is what hides the bugs, so when you treat biofilm you release more bugs to be dealt with. I may be very close to getting all the bugs I can get, at least for now, until I do more biofilm. Had a terrible few days following the trip back, thought it was from that, but also could have been herx, was very tired the day before the trip back, just resting from after the conference. Now, not so sure wasn't herx, because as I'm coming out of it, my needs for the lyme herbs is WAY down, and pendulum says only another couple weeks of abx. The maddening need for all this protein and iron and all this is also gone, back to regular foods again, adding the babesia treatment has been great and appears to have been very effective. I am still struggling with the EMF sensitivities, and maybe this is mold or the CCSVI or both, for sure my blood is still very thick and am eager to get the cistus and EDTA to get on it. The GiaWellness products, home harmonizer and pendulum have been great for me. They work by adding randomness to the EMF's so it is not just one point frequency that the body gets. I had been considering the EarthCalm products as well, and likely will get them very soon. I met an MD at the conference who seemed to know a lot about the EMF sensitivities and how to deal with them, really recommended both products along with the iWater machine from GiaWellness. Someone on here has used the EarthCalm products and spoken well of them. Dr.K. said there's a study they did with chickens where those NOT using the devices lived twice as long and were twice as healthy (or half as sick?), and he concludes from that, using these devices may make you feel better and better tolerate the EMF's in that sense, but, in the end, they still product unhealthy effect, so tolerating them more will be bad if it means you give yourself more exposure. So, that is another perspective there, one I am choosing to ignore for now, as I am so sensitive, and could use a lot of help, and don't know how to get my salary without the EMF exposure anyway (and I avoid most other exposure quite a lot). The EarthCalm products work by allowing better connection to the earth's energies, somehow, they have the word "grid" in their explanation. Another product that has helped me is Philip Stein watch, which resonates Schumann frequency. While different from EarthCalm in what it does, EarthCalm does not use Schumann frequency, my sense is EarthCalm approach may be better than Philip Stein approach and make the Philip Stein watch redundant. We will see after I get the EarthCalm stuff to see what my body and pendulum have to say. How much all these things do to the mold release of toxins, I do not know, maybe some or maybe no affect. They help in some way, but detailing out how would be a nice feat!

Just checking my notes here, yes, it is BEG Nasal Spray, the ingredients sptcmom listed, and it is Hopkinton, in MA. Thanks everybody.

Yes, thanks JF, that makes me feel much better about the ERMI testing, using a dustcloth method for rooms without carpeting. It seems then you'll feel confident you're getting some of the "over time" aspect of things, without using carpets that are going to have the entire history in there. The people who come and look for potential mold, if you will, are going to know a lot more than us here. Maybe you could collect enough nuggets to find some things. If you have carpet, you can pull up a corner and look underneath for it. Of course, that will only tell you about if there is mold wherever you pull it up. Some of it is visible, you can look in the shower/bath/kitchen area, underneath the cabinets under the sinks places, on the ceilings for stains from water (although we have several of those and the guy who came in said it was not showing signs of likely being a problem, of course we have not tested yet...). Some will come and talk to you a bit and give a little poke around high-level without any charge, perhaps that's a way to go if you can find that. jk--10 hours or 10 years?

Dr. K. mentioned aspiring, only to quickly say it was a really bad idea, but do not believe he gave any reason. Perhaps that "heart patients" thick blood, which is blamed on cholesterol, is different from the "lyme patients" thick blood, which is blamed on biofilms (various microbes and heavy metals and some minerals like calcium). He did offer a lot of treatments to break through the biofilm to thin out the blood.

We have been doing all of the things we just know we are going to do regardless of what any test shows, and then we are going to test. We had a moldy bathroom tub and walls that we got fixed, and will eventually get the air conditioning vents replaced as they have many holes in them, meaning air from the attic is easily blowing into our home. Then we'll test. It comes down to how sure you are you want to have something done anyway. The $300 for testing is a lot, yes, but, some remediation can be very expensive too, much more than that. Another question, perhaps for the potential remediator, would be, what testing, if any, would be needed to get it covered by insurance (if it was caused by something that insurance might cover). From what I heard at the ERMI conference, what people liked about ERMI testing is it tests levels over time. This can be good, as the levels are going to vary throughout the day and months and seasons, as the outside air changes due to humidity and other factors, and inside air changes due to running the A/C and so on. How good is a test that you "pass" as healthy air because you just ran the A/C for an hour, but would have failed if it was run a different time of day or the next day? I don't know that it is that dramatic, people who talk about this haven't given that level of detail. But, I thought I heard for the ERMI, you do it by vaccuuming the carpet. Now, we have just had carpet replaced in some key rooms, again, partially related to mold issues. It just can't be cleaned. So, I see how the carpet is going to tell much more of a history than their air. But, I have to wonder, how much of a history will it tell. Maybe it can be cleaned after remediation and then retested and only show the effects of the air after the remediation? It seems like a lot to ask, I say this speaking as someone who probably hauled out about 4 gallons worth of dirt from under our living/dining room carpet when we removed it. For what it's worth, of course, it had been vaccuumed, but not professionally cleaned in at least a decade. I am sure the experts have experience with this and can speak to it, but have to say, when I heard about the ERMI using the carpets, I just got all these questions and started wondering how accurate it was really going to be. Love to see others chime in here with what they have done or their plans. Sort of navigating a territory we know only a little about here.

A doc in Italy recently realized that the neuro symptoms of MS are really caused by deoxygenated blood in the brain, which is caused by blockages in the veins which drain the deoxygenated blooded back to the heart to get reoxygenated. This blockage is called CCSVI (Chronic Cerebral Spinal Venous Insufficiency). Angioplasty can be done to unblock this. Almost immediate symptom improvement can occur for the neurological symptoms. Some will relapse, as this is caused by thick blood / biofilm and so on, and if the blood is the same this can all happen again. Dr. K. thought, why not check lyme people for this, since all of MS is really just lyme. He has found this to be the case that lyme patients with neuro symptoms have this too. Just a few have had the angioplasty procedure so far. He has seen immediate improvements but also some relapses. One had immediate improvement, life back, symptoms gone, how wonderful, lasted 4 days and was back to where she was symptomwise. So he says makes sense to get the blood thinner, take care of the biofilm before doing this. Don't know what this means for all the kids, could they be blocked as well, so young? One thing I know, my blood is very thick, when I get my blood drawn I ask what it's like, and they say it is very thick. Of course there are blood tests for this too, but that's a cheap way to get a little input on that. I spoke with another doc at the conference about this, wondering, couldn't this be dangerous, causing a lot of bad stuff to break free and lodge and cause a heart attack or stroke, he thought it would be a bit of a concern, wasn't so eager to see everyone run out and do it right now, would think heparin would be pretty important there as an anticoagulant. Then again, this is done with heart patients all the time in arteries, maybe their blood is thicker and stuck with different things, maybe that matters. I have to wonder if this could be done with diet over time, not sure how long or who would want to wait that long. There was some mention of the McDougall plan diet, a vegan ultra-low-fat (10% of calories from fat) diet could be of some help. Beyond my expertise to sort all that out, obviously, but some things to think about. All this doesn't mean that it's a waste of time to treat the lyme, he still recommends this, and as usual, recommends starting with big bugs first, working way down to the smaller ones (first worms/parasites, then fungus/mold, then bacteria, then virus). A lot of stress on the other factors, heavy metals, but even more importantly on the EMF's as this is what makes the mold's grow and also product their toxins. With increased EMF's year after year, molds are going to become a much more serious problem for anyone with even slight infection as the years go by, a very dangerous situation is no doubt coming here. Anyway, at least, it is a be-on-the-lookout for those who feel they treated the infections or PANDAS or whatever the underlying cause of the neurological symptoms may be, but still have the symptoms, it is something to look out for. They can test to see if the veins are blocked, that's first step before doing the angioplasty anyway, so at a minimum, the diagnostic procedure could help see if the CCSVI is an issue for somebody.

On the urine spray, it was full-strength he was recommending. I think at some point later he did mention, yes, of course, if you are so inclined you could make a homeopathic from it and that could be pretty good. There were about 140 attendees and here and there, various short conversations amongst ourselves, in relation to what was being discussed by the presenter. I did here 1 or 2 comments about homeopathic being made from the crowd, so apparently that is something that some practitioners are doing. I am not sure if those side comments on homeopathic urine related to this spray or to the drinking urine suggestion he also made or both, I just do not remember. (Yes, drinking urine, 1/2 cup mid-morning 1/2 cup mid-afternoon for 3 months was also suggested for those with autoimmune and needing to calm the digestive system down. For this, suggested NOT using first-morning urine as it will have much more in the way of toxins.) No doubt the homeopathics will be more popular with the patients for those practitioners/patients who know how to make them. No instructions on that were given, but I would wonder if successing at various points would be important. I pulled the rife machine out of the closet last night and my wife was running some of the codes for mold/staph. This one works on sound, not contact, so anyone around will be affected (sometimes nice, sometimes not so nice, for those EMF sensitive). I did note one of the staph ones she ran was quite powerful for me and made my head uncomfortable, so perhaps the MARCONS is indeed an issue for me. More to explore there. Goodness, Source Naturals uses titanium dioxide in some of their tablets.

Here is some info discussed at the Klinghardt conference. Klinghardt discussed the possibility that many with lyme have MARCONS, a kind of bad sinus infection. The "AR" stands for "antibiotic resistant". I am posting a link here discussing it because that's a lot easier than me trying to explain it. At the conference, the time discussing MARCONS was really devoted to treatments and not to diagnostics/symptoms and all that. Here are some treatments that were mentioned. http://goodbyelyme.com/free-articles/biofilm/marcons 1. Use a netipot, 1/2 tsp xylitol, 1/2 tsp baking soda, 1/2 tsp salt. Most netipot instructions do not have the xylitol, but the bugs will ingest this and get bloated and die). For those that do not know, netipot is this little teapot shaped thing designed to help you pour water (with the other ingredients) in one nostril and have it flow out the other, to help treat infections. 2. Get a nasal spray device. (One approach is buy some cheap nasal spray with saline solution in drug store and just dump it out.) Fill this with your urine and 1 drop of potassium iodide (such as TriQuench). Spray one spray per nostril, 4 times per day for 3 weeks. The urine helps get the immune system working better. The potassium iodide acts as a preservative and also helps expose cell organelles in the urine to your nostril. 3. Homeopathic remedy such as Pleo Rec. 4. PEG spray made by Hopkinton Drug in Seattle, requires prescription, contains an antibiotic and a couple other items. 5. Get your nasal passages reshaped to allow for proper draining. Dr. Dean Howell has devised neuro cranial restructuring (NCR) technique that involves a small balloon being inserted into the nose and blown up and then popped while someone is pushing just so. May need to be done for 4-5 days consecutively. This was demonstrated at the conference, must say it was a bit uncomfortable to watch (let alone to be the person getting smushed).

Don't want to hijack your thread here, but will suggest MARCONS as a possibility, as I was recently at a conference where it was discussed. Discussion centered much more on treatment than diagnosis/symptoms, so, again, just tossing out the idea for you to consider. Details I heard at the conference will be posted in a minute on a thread called "MARCONS / Klinghardt Conference".

I am able to view it, but do not know what to make of it.

I have used it off and on a couple times as part of a fairly significant list of supplements. It was a little helpful, but not way special or anything.

In case it can be of any help, the things I added when my babs herxing started from clindamycin and malarone was alpha lipoic acid (a few hours after the drugs), vitamin B, increased red root dosage from 1 to 2 capsules, and boneset tea in evening. The ALA is an antioxidant and possibly helps by destroying some of the drug, it is hard to know for sure on that one. Best of luck getting through it!

Witout it, would have lost my job for sure, been in huge debt, living with a relative to avoid living on the street, with no hope of finding employment or health ever again.

I wanted to add ... Dr. K. mentions, I think maybe 1/3 joking and 2/3 serious, that a lot of what we do and even taste can be affected by the bugs, talking about the bugs making the things taste bad to get you to not want to take it, it's self-preservation attempt for them. I recently started clindamycin, liquid compounded, for babesia, and it's pretty bad too. What I noticed was, first time, it was quite bad, day 2-3 it was much worse, and ever since, taste has gotten much better. We could make a story around getting used to it, but I do think part of the story is the bugs made it worse as they saw what it did, now they're dying and can't do that as much...

Great to see you're making progress.

At the lyme seminar Dr. K. had this weekend, he did present GSE as being active against biofilm. He didn't discuss that point, just said it. But, as I think about it, it sure is caustic, so it kind of makes sense.

Not familiar with para-a, think I'm lucky enough to have not ended up with anything that bad. It's tricky figuring out when to dilute versus mix something else in. Besides sweeteners, maybe something else strong tasting? Peanut butter or coffee? I've heard some trick about cutting off the smell, not sure if it was just plugging nose or something else. One thing I learned with liquid antibiotics I take via measuring spoon is to put the spoon almost to the back of the tongue before turning the spoon over and taking it, so at least the front of the tongue does not have to contact it. Not sure if any of this will help, but trying anyway. Good luck!

Hopefully those are herxes that ya'all are describing. I have used it for a couple months now, heard of it for babesia and cysts, hadn't heard of it for biofilms either. Only thing I noticed was in beginning gave me what I call the breath of death, probably from die-off causing lots of fungal growth.

For those with lyme, parasite treatment is very important. Some would say it is the first step, before antibiotics. I have never used the humaworm product, I know some have used it and liked it. There are MANY other parasite treatments. You very well could be doing excellent stuff with the humaworm. Another possibility besides stopping is reducing to lower dose for now, or also trying other treatment. Perhaps tests could help target what specific parasites are around, but those tests are VERY unreliable in terms of way too many false negatives. The worms/parasites are already degraded by the time the lab gets them. So, please, if you do tests and get negative results, don't assume that means there are no parasites. We ALL have parasites, it's only a question of which ones and how many of them.

Perhaps. Hard to think that would be the big main problem, but really I am way far from an expert on that topic. We have a similar situation with our compost that I've been eyeing suspiciously and don't know what to do with. We keep compost in a big container, uncovered, but in our refrigerator, before emptying periodically when full into the backyard. It does grow lots of weird looking things, presumably some is mold or fungus, but what do I know. We are still addressing obvious mold-related items before doing testing, things we will want to do regardless of any ART of home air testing results. I imagine that will be something we leave as is until we do the testing, just because I don't see an easy answer. We started out just keeping it on the counter, tried covered and uncovered if I remember right, and we always got ants.

I was evaluated for TMJ in the summer of 2009. Back on the Tourette's board, there was an idea sweeping through that TS can be cured for some people by adjusting jaw alignment, as it can be caused by TMJ and some nerves being compromised. Apparently this treatment has worked for some. I got a device for alignment, wore it up until just about 1-2 months ago, finally did not need it anymore. It made me much more relaxed, less anxious, but did not do much more than that for me. Fast-forward, and we hear that lyme loves to hide out in joints, TMJ is one of them. The adjustment that my device did was way more than the TMJ doc said would make sense based on bone/teeth alignments, but it was very helpful at the time, probably keeping a very infected joint/nerve from being the least bit aggravated. At this point, perhaps I would benefit from a small adjustment, and it is on my list to consider after I am completed with lyme treatment. Interesting how all these different ideas come together sometimes.

I put this in google translate and it says it is French and translated it to: Hello everyone, I am looking for insurance that reimburses me well, I searched the Internet so I can choose appropriate insurance, I was advised mutual insurance sinad but I always hesitate, c is why I am interested in your opinion

Band 39 is the most specific for lyme. The IND and positive for that, along with the significant variety of other key bands, along with lyme symptoms (don't remember symptoms in your case, but if you have a PANDAS doc then there are lyme-like symptoms), means almost certainly lyme is involved and a significant part of the problem for your daughter. Time for treatment.

Her last flagyl was Apr17, but what is she currently taking (anything)?