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Is Lyme and PANDAS treatment the same?

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Hi Jay,


I'm going to take a stab at this even though I know there are others both more knowledgeable and more articulate than I am.


Antibiotics are a tool to help treat both a strep infection (PANDAS) and Lyme. However, not all antibiotics work the same way and not all people respond the same way to the same antibiotic. Different bacteria also respond differently to different antibiotics. For example, some antibiotics, like Zithromax, go inside the cells. So if that's where the infection is, then an antibiotic that can reach it will be more effective than an antibiotic that does not work intra-cellularly. Similarly, if the infection is in the brain, then (I think) you need an antibiotic that can cross the blood brain barrier.


With Lyme, too, there are often several infections at play (co-infections). So often, in addition to the Borellia bacteria (a.k.a. Lyme), Lyme patients are often times infected with other tick born diseases such as Babesia, Bartonella, Ehrlichiosis, Ricksettia, etc. So you often need more than one type of antibiotic at the same time. For example, my dd has PANDAS, Bartonella and possibly Lyme, she is being treated with Zithromax and Bactrim.


As for the testing, what constitutes a positive of negative test is very controversial. With Borrelia, there are many different protein bands that the tests look at. Some of those bands are specific to Borelia, others can be found in bacteria other than Borrelia. Some LLMDs will say that if you show antibodies against even one of the bands that is specific to Borrelia, then that indicates exposure to the Borrelia bacteria. The CDC says you need to show antibodies to at least five of the bands (some of which are specific to Borrelia and others that are not), to test positive for Lyme. So if you do a standard Lyme test and only show antibodies to two or three bands, then your test will say negative.


You may want to post this question on the Lyme board to get some more input. This is my first time trying to actually write a response to such a question. If anyone else wants to chime in and tell me if they understand things differently or has more to add, please do.






I have read that some people don't see progress from PANDAS until they start treating Lyme. Don't both treat with antibiotics? what is the difference between the treatments. If someone had Lyme for a long time how could they test negative for it?

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One thing I want to add is that with the most frequent testing done for lyme, such as western blot, what is being tested is antibodies. If someone has had it for a long time, they may be so weak they are not making antibodies at a level enough to be detected by the test. Another things is that lyme causes autoimmunity, in part because, over time, it will change its own DNA and the person's DNA such that the immune system may not be able to make antibodies for the standard lyme strain being tested for. Instead, the immune system may be making antibodies for what lyme has morphed into, or for what lyme has programmed it to make antibodies for.

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As Kara described, when the borellia/lyme spirochete (the name of the shape of the bacteria) is intra-cellular, it's sometimes called the "L Form" and when it's extracellular, it's called a spirochete. When a spirochete comes under attack by an antibiotic, it can curl up and go into a dormant form, forming a harder outside shell called a cyst form. The cyst form is resistant to a large number of antibiotics and only a few are known to be able to penetrate (flagyl and tinidazole). So if someone has been on antibiotics for awhile, it's very possible that some of the lyme spirochetes have gone into the cyst form, waiting to re-emerge when the antibiotic threat is over.


Further complicating things, spirochetes, like many bacteria, can form colonies, called biofilms. It's thought that biofilms are built with several important minerals found in the body (magnesium, calcium, zinc) and some heavy metals (lead, mercury). Research is still just emerging. Plaque on your teeth is a biofilm. As it matures, it can become hard and resistant to abx. Periodically, the colony life cycle matures and some spirochete emerge from the biofilm to reproduce and go off an start new colonies.


So if you've had an untreated, chronic infection, you can have 3 forms of the borellia bacteria living in you - the spirochete (extra-cellular) vulnerable to one class of abx, the L-Form (intra-cellular) requiring a different class of abx, and a cyst form - requiring a third class of abx. And as Kara mentioned, your tick may have also brought bartonella, babesia (a red blood cell infection), erhlichiosis, mycoplasma and all sorts of goodies along too. Some unlucky people also end up having to deal with biofilms, which first have to be broken down (NAC, chelators and some natural supplements do this) to get at the bugs inside. And inside, you may find not only borellia, but other bacteria and viruses as well as mercury and/or lead. So as the stuff in the biofilm gets killed off (requiring abx) you also need to be able to handle the toxins that get released and possibly the metals that get released.


I know some of this sounds overwhelming, too nuts to be true. Not everyone who gets lyme gets chronically sick. Some people have the immune systems to handle it quickly, or if caught early enough, with just the help of a few antibiotics for a few months. Just like most people get strep and it's no big deal. But for those not blessed with healthy immune systems, it becomes a long, strategic war.


Ok, a much longer answer than you really wanted. From the outside, it looks like it's just a bunch of nuts chasing their tails. But it can get complicated and I just wanted to toss out a few of the complications so you might understand why we get as nuts as we do. The longer things go untreated or partially treated, the worse it can get.

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