MichaelTampa

All this is a reminder, one I needed, to not read and assume too much from media reports. Someone reads somewhere that the person is cured. I have also read/heard somewhere they keep coming back. This is very typical of media reports, and perhaps just people in general to some extend (remembering the telephone game). But the media has the added reality where they are doing what they can with every story they write to find an angle, an approach, a way of presenting the story to make it interesting. That adds to misunderstandings during interviews and the like. I know, I have been the subject of interviews and media reports in the past, this is how it works, it does mean that while stories will have some truths here and there, but to accept everything literally as said is really to not understand (or forget) how fragile the truth gets in the process. I'll certainly watch with interest as the situation progresses, I really believe it likely we'll have an important "teachable moment" (as the president says) for the medical community coming related to this case, maybe not and we'll see, but I am going to try to back off making too many conclusions or assumptions from every little thing I hear or read.

I haven't ever used salt for that meal or for soaking nuts. Is it just for flavor, or supposed to do something extra?

Here is a link of 45 minutes of audio on Dr. Klinghardt speaking about EMF's and their affect on the body. Listening to it now, not finished, very good, some discussion of babies, fetuses, autism, heavy metals. One striking comment was that he can calculate developmental problems a child will have from a few simple measurements of where the mother is sleeping while pregnant! (For those that don't know, he's a very well respected LLMD, no mention yet of lyme, but a good listen regardless.) http://electromagnetichealth.org/audio-archives-and-more/#patients

I get your concern Vickie, and I would add that it may not be reasonable to expect that a PANDAS defense is going to be useful in the real world we live in today. On the other hand, if it gets a lot of publicity, it could push doctors to treat it more seriously, so there is possible positive there too. As someone who has been through the rages, whether mine were lyme or PANDAS or both, and reading what other PANDAS rages can be like (on this forum), it just seems that if she does have PANDAS, how could it not have played some role in the murder...

Speaking of recipes and cashew milk, don't have one for cashew milk to drink as is. But, I frequently make cashew french toast, where the batter is simply raw cashews, soaked a few hours or overnight, drained, and then blended with some fresh water. I cook it with coconut oil and sprinkle cinnamon on it and as well, and use toppings of almond butter, coconut oil, and strawberries (I buy frozen and then just thaw them in the refrigerator).

Yes, very common. Then there are the very occasional lymies where the levels are extremely high, way out of range. There is a real lesson in there for the regular docs who monitor those levels, to not just keep responding by recommending supplementing with vitD and then upping the dosage when that doesn't work and so on. Perhaps the supplementation is helpful, it probably is in the majority of cases, but there is a time to realize that the body is not responding normally to supplementation and use that as a real clue...

My neck of the woods, somehow wish this could have been prevented, obviously... http://news.yahoo.com/s/ap/20101025/ap_on_re_us/us_endless_hiccups_arrest

The allergie-immun drops are meant as a more or less permanent repair of DNA to help with immune system and detoxing, including training your body to recognize what is bad and work to detox it. (I'm not sure any repair has to be permanent, if damaged once, perhaps it can be damaged again, would be my thought.) It is a program to take regularly while you are on it. Each bottle of drops they send you, you take 5 drops, 3 times a day, for 14 days (or if you energy test, you might do slightly different). Then you send another saliva sample and they send you a new bottle of drops, and this process continues until they test the saliva and it looks complete. It costs 450 euros to start (they are in Germany), plus 10 euro for each bottle beyond the first bottle. Last I looked the translation to dollars was about 120%-125%, so the 450 euros is perhaps around $575. There is a very long thread on the lymenet message board about it (they call it AI there). A number of people who used it feel it really helped them get over lyme, I think partly detox but also partly because it is supposed to help the body properly deal with lyme bugs and know they are bad too. I really feel it is doing good things as most bottles when I start taking them, initiate a big detox through skin, much more oily with pimples. Also energy testing for priority shows very high for me. What damage already done are you looking for help with repair? Michael

There are a number of views, and each doctor and patient may be a little different. Some want to treat the problem that is most holding the person back from handling the bugs on their own. Some want to start where the problem started, what first created symptoms (even if it was years ago). Then, there are practicalities, like the quinolones used to treat bartonella can be made less effective by prior treatments for babesia, which means there may be good reason to babesia first. Some really feel it is difficult to make progress with lyme before dealing with the parasites/worms.

I don't have any ideas other than an LLMD. There are some psychiatrists/psychologists that recognize it is infection related, but still, they're not going to have anywhere close to the skills to fix it up. In theory, that would be what "Infectious Disease" doctors are for, it's just that if they're not an LLMD, a huge possibility for treatment is going to be ignored. Some LLMD's do list themselves, by the way, as "Infectious Disease" doctors on their cards and so on--mine does, even though he is a member of ILADS. I would recommend in general suggesting these people get an ILADS member who is at least somewhat versed in other infectious diseases. I'm not sure if all of them are or not. If they don't get anywhere with a lyme/ILADS lookup, perhaps a "regular" infectious disease doc would then be the place to try. ILADS website has contact information to get local referrals.

I have been thinking of doing this myself with a couple of the psychiatrist types. Any anger I have is really just about the system and how docs are too specialized to really help most people ... not a problem any one patient or doctor is going to be able to solve very easily. So, yes, just in the nature, of, maybe this can help one of their current or future patients. I really think these two people were caring and as helpful for me as they could have been, given their limited knowledge, and so, again, not much to be angry about toward them. I really think it can be done better in person, or else a really long letter, to really give them a chance to learn. I would love to do it that way, but geeze, $300 per hour, you know... Thanks for pointing out Suzan, how it could be responded to, so, yes, just have to set the expectation of response properly. Regarding your actual question, cobbie, gee, it depends who you are writing to. To a psychiatrist, it is, I think that so many infections can cause psychiatric and neurological symptoms, there is history behind this, seemingly it was more well known decades ago than now (wish I had the good information to back that up, I have read it probably here or lymenet). So look for infections, look for lyme, and here are some important ways to look (symptoms to look for, tests to do). Michael

With the understanding that they're not that reliable, as you say, I would go with both ELISA and western blot. They're relatively cheap, yes. The other downside is you're waiting another doctor apptment and test cycle before getting the good tests, but the LabCorp/Quest probably don't take that long to get results.

I remember my lyme doc telling me that most people feel substantially better after 1 month. Now, he treats with IV abx. And he does treat much longer-term, and there can be a big difference between killing enough bugs to feel substantially better and really having done everything you need to do to be over it and no longer needing any treatment. As others have said, what the person really has, and what strain, can matter a lot in terms of how quickly things go and come back. This is why having a doctor really experienced in this can be very helpful. CD57 is a marker that some use to rely on, it has been very telling for my progression. 200 is seen as normal, and stopping treatment before you're up to 100 is seen as a bad idea in terms of the chances of going back downhill. CD57 is something you can't get from Quest, but can from LabCorp, I think it's like $150 but with insurance I pay like $15 for it. CD57 is only a marker for borrelia, not any of the coinfections, so, people who stop treatment with a good CD57 score can go downhill if the coinfections were not treated.

I use cholestryamine (a prescription med) and chlorella for binders, similar to what the clay and charcoal. Some others are beta-sitosterol and pectin. There is also Questran (a prescription med) as well. With the prescription meds, generally, they love to put real sugar or fake sugar in them, so I get it compounded at a pharmacy without that. I believe you can't do that right now with Questran, as it is under patent. They all can work, although I'm sure some individuals will do better with certain ones. As far as detox, the single thing I have done that has helped the most is Allergie-Immun drops. This is a German company that will analyze your saliva for "allergies" to substances and create homeopathic-like drops with "information" in them to "repair your DNA". Whatever that means, what many with lyme report is removal of food and other allergies and true beginning of heavy metal detox process. The theory with the heavy metals, just like some with lyme, is the body does not recognize the substance as something inappropriate for the body, so the body does not remove the heavy metal or fight the borrelia. After taking the Allergie-Immun drops, the body recognizes the substance as bad and begins to take action. I am taking NeuroAntitox II from Jernigan nutraceuticals to remove ammonia as well, and I can tell that is working as well, having ear ringing coming and going as a result of taking them (sometimes within a minute, sometimes 15 minutes). Regarding the hulda clark liver flush, not sure what that is you refer to. I have read one of her books and taken some recommendations. I am now working on worms/parasites, and trying to avoid onions/mustard/garlic for a week just as a trial. I am taking "Gamma Rizole" from BioPure, which contains her recommended black walnut/clove/with one or two other herbs. I am considering doing what I think of as a gallbladder flush in a week or two, the thing where you dump grapefruit/lemon juice and olive oil down yourself in hopes of cleansing. I tried that gallbladder flush a few years back, and it only ended in vomiting, so doing some more prep work to hopefully make it successful this time. Is that the liver flush, or is liver flush a product? With lyme, the detox is very important, the toxins really build up and can be a source of many of the symptoms.

Just a reminder, this is tomorrow night (Friday night).

I have heard of that one. I found it in the store, but did not take it. If I remember, I "energy tested" bad for it. One herb according to Buhner that is supposed to help particularly with neurological symptoms and damage is stephania, either stephania tetandra or stephania something-else-that-starts-with-a-c. I actually just started taking it about a week ago and test very strong for it.

Mine was 186, - later diagnosed with lyme as symptoms - male, age 42 - not in particular exacerbation, just regular ordinary crummy health - no IVIG before or after

Saw this posted elsewhere, thought I would share it for those interested. Apparently, TruTV has season two of their show "Conspiracy Theory" starting Friday October 15 at 10PM. This show apparently has the ex-governor Ventura investigate and discuss conspiracy theories. The one being covered on October 15 revolves around Plum Island, an island off New York state. Some say this island was used to develop biological weapons, and this is how lyme disease got spread so much (purposely or accidentally, I don't know how the theory goes). Anyway, for those interested, take note. I've never even heard of TruTV, don't know if I even get it.

H Mom, There are a couple books I would recommend in terms of considering going the non-abx approach. Insights into Lyme Disease Treatment, by Connie Strasheim Healing Lyme, by Stephen Buhner Strasheim's book provides a discussion from 13 different doctors, how they treat lyme. Some with abx, some not. Buhner's book provides an herbal protocol. I imagine a number of people have gotten well without abx, but I think the many people will have difficulty doing that without the abx. The majority struggle to do it any which way they can, and I think many struggle even though they go with abx and herbs. These two books will certainly give you some ideas, regardless of which way you go. Regarding, TX, yes, we hear it is somewhat illegal to seriously treat lyme in Texas, quite a shame! Wishing you the best! Michael

Yes, certainly heard of the mold, but haven't done anything about it yet. I have been spending a lot of energy lately on parasites/worms, really thinking that is part of what is going on, causing bad digestive symptoms when the colonoscopy came out clean, and my NAET acupuncturist keeps testing me as allergic to parasites and I can't get the allergy cleared like most do. That mold has been lurking in my mind as something I imagine I'll have to do something about, but just haven't gotten there yet. I like the idea of the dog checking things out, hadn't heard of that idea yet, but a little confused on what you wrote. You would do that AND get air samples checked some other way? What is the other way? Yes, I do have a rife machine, I believe it has helped a little, but not necessarily a real lot.

Dawn, I'm doing, these days, how would you say it, "so-so", I guess. I started considering lyme when lyme mom came on and discussed bartonella and lyme. Around that time, I was just about to start PANDAS treatment via Dr.K.'s recommendation, and did go ahead while awaiting IGeneX lyme test results. The biaxin helped a little and augmentin did not help at all. Then the lyme tests came back in a way that my doctor and I interpreted as positive (41+, 39 indeterminate, with low CD57). I let Dr.K. know we were exploring lyme but really don't know where I left off giving him the story of what was going on, but am now being treated by a lyme doc. The IV abx for two months really helped, but I am now relapsing slowly as we continue to seek insurance approval to start up the IV abx again. While I am relapsing, it is slow, and I am still doing well enough that I am able to work in an office with wireless routers and follow the meaning of sentences and conversations and have thoughts and communicate them (all key aspects of the job, obviously) and not have terrible headaches all the time, and I was not able to do that before the lyme treatment, so that is great. It is certainly a concern, though, how long I am going to be able to continue to do that if I don't get more abx. Michael

Yes, the 31 and 34 bands are considered lyme specific. Some lyme docs consider the indeterminate to be positive. So, it's really up to interpretation.

The ILADS website has treatment guidelines, written by Burrascano, and at the end he has a supplement regimen he recommends. By the time I read it, there were many I had already been taking, but there were still many that he listed that I had not considered, and I found a lot of good suggestions in there, although I found the recommended dosages to be far too high compared to what I needed.

It is an interesting question. Don't they say, generally, babies get antibodies for fighting various bugs from breast milk? Seems like the same idea. As far as what I have heard, though, is some people think that the baby will not develop lyme antibodies if their mother has it because the baby's immune system will not consider it foreign. I'm not sure how you would reconcile that with how people talk about the other bugs.

Just want to point out, as I am re-reading this article, the author IS recommending a low-protein diet for those with lyme, as he really feels even arginine in foods can act with ammonia to cause problems. That is in contrast to what I have heard others recommend for those with lyme, although they were likely not. However, he also suggests, alternatively, instead of a low-protein diet, one could supplement with lysine to counteract the effects of arginine, or eat a high-bean diet which contains a lot of lysine. I feel there is probably truth in all of this. I know I needed more protein supplement when my lyme was at its worst, and I know it contained substantial arginine (my supplement was from hemp). However, when lyme was at its worst, I also took additional lysine (not with the reason of canceling out arginine, but I did it), and, as a vegan, perhaps the lysine from beans is enough to cancel out the arginine I was consuming. Just wanted to point that out for those who had not read the article. It is an interesting read for those who have the time.