MichaelTampa

It's great, it does help with babesia treatment, and also worms/parasites. I use NutriCology brand's "Super Artimisinin", I order it online from vitacost.com or iherb.com.

Removing is not quite the only approach. Another approach is regenerative cryotherapy, where they are frozen off and regrow. It may not be available in US, the link below is from Germany. http://www.kryopraxis.de/

Yes, for sure heavy metals are part of it, and yes, it seems we talk very little about them. I think many llmd's don't really deal with it, and probably do not understand it is an important part of the picture--similar to parasites. I imagine this is part of why treatment takes so long for some people, and some never get healed.

Gosh, I sure hope so! It really has happened for some people. You may not find many such examples on here, as lyme is a relatively new topic on this board (last 18 months or so). There are more such examples on a longer-standing lyme message board such as lymenet. I keep thinking I'm close, I am certainly reaping many rewards being at the place I am, even if I never get any further, although I continue to work to get all the way. It might be fair to say that the docs who treat lyme seriously have still been finding their way over the last decade or so--they know some important things, they do some good things, and it is enough in some cases and not enough in others. There are some innovative treatments out there, not everyone just uses boatloads of antibiotics. Some people are using photon treatments with detox support to get well, Dr. Klinghardt is using a lot of herbs and other nontraditional things rather than antibiotics, and then, for some, smaller amounts of antibiotics to get well at the end of treatment. He is finding the Babushka principal of "layers" of bugs and conditions to deal with. He talks about how the world has really changed in that decades ago miracles could be performed with a little acupuncture here or homeopathy there, and the world is simply not that way anymore. One big part of that reason is the EMF's, especially wireless signals, that are bouncing around everywhere. So, these serious illnesses are taking time for many treatment approaches. There are estimates out there as much as one year of treatment for every year of illness. I sure hope that is not the case for me, and doubt it very much, as that would mean about 40 more years of treatment for me! Another estimate I have seen is 3 months for every year of illness. Reality is, it varies so much, no rule of thumb is very good, I think for many it does take at least 2-3 years. For some it is longer. Some keep fighting and 10 years later are wondering if they will ever get there. I think how sick one is and the treatment approach one takes can matter A LOT. I think sometimes we do treat things in nonstrategic ways, and mess things up. I am now fighting fungal infection from all the antibiotics. Maybe if I had started with treatment for parasites and fungus first, that order would have avoided this situation. Now, my situation was urgent, and that order might have meant I lost my job and wouldn't have had funds to finish treatment. So, there are many considerations. But I think there is both -- there are just so many bugs by the time some of us find out where we are with this illness, that there is a lot of work to do with different bugs, but, also, yes, we are playing wack-a-mole some and there needs to be an overall strategy to get from where we are to the end of being done. Sometimes the optimal route has a few detours but we take a few extra ones because we don't know everything. I don't think we can ever get rid of ALL of the bugs, the more I see and hear, the more I think that is an unrealistic goal. But the goal of getting the life back and stopping treatment is real, people do it, it happens. Okay, done rambling for now, off to another crazy place to get another crazy test...

I'm not sure much is known about the pandas side of your question, in any event, I don't know anything about that. I But that is an interesting idea to explain why the ongoing abx would work, in essence, by keeping the strep in L form. On the lyme side, there is a cyst/inactive form, which I believe is also called the L form. This contrasts with the active spirochete form. Flagyl/tindamax do fight the cyst form. On the neuropsych symptoms for lyme, there is probably much more speculation than real knowledge. I have heard the neuropsych attributed bartonella, but also to the lyme (borrelia). I haven't hear people speculate in terms of active vs. cyst form. It does seem many do believe the neuropsych symptoms (and other symptoms, such as pain and so on) really are from inflamation rather than the bugs themselves. But now very recent evidence confirms that CCSVI, blockages in veins in neck returning blood from brain, plays a huge role in neurological symptoms, and I'd love if people would be clear if they meant neuro symptoms other than the neuropsych symptoms, or if they meant all neuro symptoms, even the neuropsych symptoms. It was discovered in 2009 that neuro symptoms of MS are caused by this CCSVI blockage, and as some in the lyme world know MS is caused by lyme, lymies with neuro symptoms are being tested, finding they all have this CCSVI blockage as well, and some have had amazing elimination of neuro symptoms by clearing this blockage with angioplasty (although the symptoms return in some cases, as the blockage can returns). They view low-oxygen blood trapped in brain for the neuro symptoms. But still, this doesn't rule out inflamation as the ultimate causes, as perhaps this low-oxygen blood results in inflamation... The problem with being sure with so much of this stuff, is, the tests for strep and lyme and bartonella are so bad, people go by symptoms, and then use antibiotics that are more broad-spectrum than specific against any one bug. So, we just have this picture of people having these symptoms, taking these things, get this result. People have built a lot of "understanding/stories" around this, assuming it is a particular bug being acted on by a particular antibiotic, and then when symptoms disappear, they think they have learned what caused what, but this whole understanding is built on something, well, sturdier than a house of cards, but not with a real solid foundation either.

I hear Alaska may have fewer. Antarctica? I don't imagine there are any easy answers. Indoors and no pets is no doubt safer, but, for those already infected and sick, in the end you will have to clean up your body and (for most people) diet and exercise lifestyle to get healthy, it's a real question if effort avoiding tics is well spent.

Gosh, no shower? I have IV abx for two months, bought something for like $30 from a pharmacy to cover the arm, and was able to shower while keeping it dry, although it was a nuisance. I did sweat just a couple times, and it was not disastrous, but it was very uncomfortable right where the bandage patch was, as the sweat was probably stuck there underneath. Interesting about the liver enzymes, was not aware of that.

I think it's great you're looking into these things, and good your doc is open trying to help. Yes, it sure is tough sometimes trying to play doctor along with dealing with the condition itself, but it seems to be the reality for many of us. Here are my thoughts on your questions, some of them I don't really have a lot of experience to give me a full perspective on them. 1. I haven't looked much into reading Dr. K., but someone told me recently they had read a book of his, although it wasn't on the lyme topic. The lyme field is developing so quickly, though, any published works are going to be out of date. But you can find some things on the klinghardtacademy.com website, such as the "5 levels of healing". I think the closest thing to a book of his thoughts on lyme really is the DVD's of his conference in May, "A Deep Look Beyond Lyme". I went to the conference thinking I knew most of his protocol, but expecting to learn a little detail here and there, and was blown away with the amount of knowledge I had no idea about. Just now going through the DVD's and learning many more things I probably quickly forgot. They are simply packed with info, some ideas will resonate more when one is at the stage where it is relevant. 2. Hopefully sptc can answer this one. 3. I personally haven't used his lyme cocktail idea with the bunch of stuff in it. I ran into his idea of this fairly late in my treatment where perhaps it would not make as much sense. That idea of his is one that has always seemed a little off, at least for me, as my body tends to not want bunches of stuff all together; rather, it prefers things separately. I have used abx through most of my treatment, though am off them now and may be done with them. I have found the abx+herb combination very effective for me, I think much more effective than either one separately could have been. Dr. K. seems to like to avoid abx as much as possible, using it later on as necessary, focusing more on parasites first; in general that seems a wise approach if progress is fast enough for the situation. Theory makes a lot of sense, but really I have no experience seeing how that goes. I started out with abx early on, really was in a hurry for some healing to keep my job, and was not even aware of his theories at that time. 4. I'm not a big fan of the coinfection tests. I don't know how useful any of that is. If one is playing the abx roulette guessing game, the common guesses from that have historically been based on symptoms (and what coinfections people conclude you have based on symptoms), since the tests are so unreliable anyway. If one is using energy testing, then use that to see what coinfections are issues and use that to determine treatment. I really think the energy testing diagnostics are more useful than the labs. In the end, if you're seeing good progress, that's great, if not, time to do something different with treatment. Probably a case could be made for more labs if one really keep struggling with a few different attempts at treatment, particularly if there is no access to the energy testing (such as Klinghardt's ART). 5. Ideally one uses a dosage and has detox/drainage strategies so that herxes are limited or at least bearable. On the other end, abx needs to be stopped sometimes to avoid killing the patient; I hear LLMD's are occasionally faced with making that type of decision, hopefully those are very rare situations. My intuition (I think that's what it is, just a patient with my one experience) is that steady is generally better to win the race, and if this were happening to me, I would look to reduce dosage or increase detox/drainage as an alternative to needing to take regular breaks. But, I can see how a drug might get started, things might go crazy, and a break might be necessary at least right away to give time to evaluate the situation and make a plan. Michael

I am now 15 months into treatment that has been VERY aggressive, trying MANY things, using energy testing to weekly monitor what is successful, what is not, what needs to be added to help (whether it's detox help or bug killing help or whatever). I am much much better, I am at the point where I could live my life like this if I had to and I guess it would be okay, don't think I have said that to anybody yet, but I think I realized that a week or two ago. I do still have some symptoms, maybe at 95% better or something like that. (Of course, our society no doubt has more wireless signals planned, pressuring me to stay ahead of the curve--nothing ever stays the same.) I do believe this aggressive approach has made a huge difference in timeline and in how I have felt throughout the process. I have heard estimates for treatment length of 3 months for every year of illness before treatment, and even as high as 1 year for every year of illness before treatment (meaning I would need about 40 years of treatment!). I have read one prominent ILADS doc giving a talk and saying 95% relapse after abx stop, and so that concurs with your doc's grim assessment that all we can do is just manage the disease. I think that is wrong if it is truly treated well, but it is probably right for how most docs, even ILADS trained, really treat the disease. Once we are really sick with lyme, there is so much more than borrelia going on here that really needs to be dealt with for a real lasting cure. The lasting cure does happen for some people, but most will have to do many things, really work at it, go well beyond borrelia/bart/babs in treatment. As 90% of the cells hanging out in our body are non-human, I think it is unrealistic to think we can get rid of every borrelia/bart/babs organism, but don't think it's necessary to do that to be cured. I believe that about half the population has borrelia infection, the western blot band 41 positives say so for those willing to believe the chemicals used to run the tests are unbiased, so I do not think a few borrelia bugs in the human body has to mean we are sick and constantly needing effort to manage that situation (other than normal good taking care of one's body that anyone would need to do). I do believe Dr. Klinghardt stands almost alone (or maybe truly alone) amongst those in the lyme field in terms of truly getting the cause of the situation, and finding all the aspects that need treatment for true health. I would encourage anyone concerned that they are not on a trajectory to getting fully through this to access more of this teachings. If you can find a Klinghardt-trained physician, as spctmom mentions the possibility in her recent "ART" thread, that should be wonderful. If not, accessing DVD's of his conference in May could allow you to see what you might be missing, and put you in the position of at least knowing what to look for in successful treatment.

I have aetna and they have covered chiropractors on more than one occasion. But, it could be the plan is different based on what the employer has set up with aetna.

Good information there. I have seen for myself how useful it can be to tweak my treatments on a weekly basis ... well, some weeks a tweak and occasionally a bigger change in direction. This disease is complex, and successful treatment is going to be complex and need some updating/changing like that. ART or similar energetic testing is really the only practical and effective way to do it, there is no question about that. I had actually contacted the Klinghardt office in WA several months ago (6 or more) looking for a local referral, and they did not do that at the time. I did meet Debbie, who works in a NJ office, at the conference in May, and agree with what you say about her, I think in May she said they were working on being able to give referrals for Klinghardt trained physicians. Do you have current info that they are able to do that now?

When I came off abx recently, my body wanted the milk thistle (silymarin) for a week or two. I hadn't been on it during months of abx, I think because it can interfere with the abx (by detoxing it). I am also on red root recently and it is good for detox as well.

Clever idea to call IgeneX and ask them what they compared to!

I hear that while Malarone or Mepron can be very helpful for babesia, people rarely treat it successfully without also adding in the herb artimisinin. Some recommend artimisinin only 5 days a week and taking a full week off every month as the body can start to reject the artimisinin.

It used to be that Quest did not do the CD57. Recently (maybe 3-5 months ago?) they started doing it. Since then, on another lyme message board that gets a lot more traffic than this one, I have seen maybe 5 or so posts of people saying they had got it from Quest, posting the results, and hoping for people to interpret from the results what the score is. No, they weren't asking for advice on what the score means, they were saying, "this is what the paper says, which of these numbers is my score". I haven't seen anyone confidently answer that question for any of these people, so, until that gets figured out, I would strongly recommend staying away from Quest. While an equivalent score might be in there somewhere, I personally don't have real confidence that it is. Even though IGeneX may be more dedicated toward lyme, I still think LabCorp is the way to go, because all the history of "this score predicts that" and so on is based on LabCorp scores.

kboss - Borrelia ("lyme") can be transmitted in ways other than tick bites--mosquitos, in utero, sexually, it has been found in every bodily fluids. There are worms/parasites that can transmit from bedding and clothing and touching and breathing, these worms actually "farm" borrelia spirochetes just like humans farm cows, I really think there are way more infected than most are willing to believe. Dr. Klinghardt in his recent lyme conference in May talks about how in Germany decades ago in the black forest region almost everyone had borrelia in them, but they were not ill. It is the other things going on today that make us ill, and once the lyme gets your immune system down, it will take serious treatment to get the body back in charge. It reminds me about the wild debate on "band 41 only" positives, and one study of 800 or so people showing that 50% or so of the general population test positive. People react that the test is obviously wrong because it appears to them that much less than 50% of the population has lyme disease, but they ignore the possibility, maybe this many are infected, even though far fewer are sick. I do hear band 41 is first to show, so band 23 still may be something to take as more significant than band 41. This Dr. Klinghardt conference was titled "A Look Beyond Lyme", and while many things discussed were key for people suffering from lyme, really, everything discussed was very useful for anyone these days suffering from any type of illness, including any type of neurological illness or cancer, etc. They discussed EMF's, mold, parasites/worms, fungus, PANDAS, autism, MS, heavy metals, and all the things you can do to treat before eventually getting to the actual borrelia. For those battling the question of whether they or their kid has lyme or doesn't have lyme, what to do, another idea is get the DVD's from this conference, and learn so much that needs to be done for anyone who is sick in the 21st century, whether it is lyme or not.

oh okay, I guess, yes, something there to be thankful for

I don't know why charcoal isn't mentioned much in the lyme community. I had already run into cholestyramine and chlorella before I heard about it. Still, I tried to get some to see if it would be good for me, couldn't find a vegan one so gave up on it. But one difference between charcoal and chlorella--chlorella is nutritional, it is a food, it will give protein and vitamins and other goodies--charcoal is just going to soak things up and take them away.

There are at least a few more antitiobics that work for bartonella. But, there are also many other ways of treating lyme disease with bartonella, beyond those drugs. If I remember and am keeping your situation straight, you have an LLMD pretty experienced with treating kids? If so, we can hope his experience will get you through this, it does sometimes take some tinkering and a little bit trial and error. But know, there are also other docs out there with other protocols, if that ever becomes important. There really is so much out there, I can't believe that NOTHING would ever work.

Wonderful, yes, this has apparently worked for some! The trigeminal nerve can be pinched by jaw movements in some cases.

I believe the traditional view of igg and igm, generally, with respect to all infections, is that igm is the one that shows initial exposure, and igg is more related to current exposure. So, in general, positive igm and negative igg might be said to indicate that there was exposure, but not one that is current. Then, when you get into the lyme world, there are plenty of things you can hear that are exceptions to this. With the lyme bugs changing their dna and the person's ability to make antibodies, a lot can change, and igm could, for example appear later, after the lyme bug's dna has changed and immune system sees this as new infection; or igg could go negative because person is too sick to make them, or lyme bug's dna has changed, ... So I'm not sure how much certainty there is with the igg vs. igm and what they distinctly mean in the lyme world.

Dr. Klinghardt had a lyme conference in early May. The DVD's of the conference are now available, just got mine last night. For those not getting care from his office or "network" or otherwise tuned in to his ideas, you will likely find this conference to have many excellent ideas and information that you/your doctor are not using. I felt I was tuned in to his ideas before going to the conference, but still learned many many things that have been extremely helpful for me already, since returning from the conference. Some of this was very new information that, as far as I can tell, has still received very limited exposure in most of the lyme world. I did take many notes, and did post about a couple of these ideas when I got back, but which ideas will be most helpful for one is going to vary so much, person to person, and even over time. That is where I really feel, there is no summary of notes I can prepare that could compare to watching it yourself, where the important ideas for you will resonate. Anyway, just want to you let you know about this resource now available. I am still happy to answer any questions about the conference that I can, but if anyone does want to order and get the full scoop for themselves, they are available through Klinghardt Academy, the contact for them is info@klinghardtacademy.com.

I'll go with calling it outrageous too. Have they told you that is the reason? If my insurance company told me that, I would be going straight to my state insurance department and filing a formal complaint. Obviously, if they are denying everything from him, in the end, if you press them for a reason for denial, they will ultimately give a reason that is outrageous, and then that is the time to call the authorities.

Are you talking about an MD who happens to have "integrative" on his card, so everything he does is not covered, or an MD where some things are covered, but when he does "sounds-wacky-procedure-code-such-and-such", it is not covered?

I'd encourage you to remain open-minded about the possibility of immune problems making you more susceptible to lyme when you got the tick bite (although unfortunately don't have any knowledge/thoughts on how to pursue that), and also the possibility that you have had lyme all your life passed on from your mother (as that can happen, don't know if she's been tested).