MichaelTampa

Yes, after two months without noticeable improvement and without much herx, sounds like time to sit down with LLMD and discuss if it's time to try something different. It can be important what infection/coinfections are addressed and in what order, sometimes adjusting that can make all the difference.

Yes, good to consider lyme. Possibilities include PANDAS only and lyme only and PANDAS+lyme. Regarding lyme, I think a common approach is to get an IGeneX western blot and IFA (similar to ELISA) test. They have that in a package. IGeneX is one of the specialty labs for lyme, and will give a better western blot than LabCorp or Quest. The western blot just looks for antibodies to borrelia (lyme), but not coinfections. Some people and docs also like to do the CD57 test, others think it is useless for people below age 13-15. CD57 has historically been LabCorp only, with it not available elsewhere. Apparently it is now available at Quest and IGeneX. I would still recommend LabCorp for it, for those doing it, because people like to compare scores and what they mean, and all the history is LabCorp. Of course, to limit needles and visits, getting that with IGeneX does have the convenience and less pain factor going for it. There are lots of other tests, coinfections and whatnot, I think there the various tests the different docs use really diverges, and so going too far in that direction is potentially doing tests that the doc won't think are needed. IGeneX will require MD to sign for the test. Another approach is to get a lyme doc and do what tests they think make sense as determined on the first visit. That could eliminate wasteful testing, but would likely slow things down if you could get another doc to sign for the IGeneX while you're waiting for an LLMD appointment. I say that because in many cases it can take weeks/months to get into a lyme doctor, but every situation is different. I think some like to get the tests and use results to see if a visit to an LLMD is warranted. Everyone has their own perspective, but since the tests are so unreliable, I think any serious consideration of lyme involves having a lyme expert (LLMD or LLND or whatever) visit with the patient and discuss symptoms, regardless of the test result. For anyone with that view, no need to wait for test results to schedule an appointment. Hope that helps get you started with some thoughts. Michael

Just outrageous, and crazy, just unbelievable, how many stories I have heard/read like this. Almost replied to the other thread, the "what would you tell your regular doc" thread, that I don't tend to hide things, and like to have doctors who truly understand and are helpful, the rest, there's no need to go back. I've heard to much it's lack of training and ignorance on lyme and all that. But, it seems it must go a little beyond that. What are they teaching in these medical schools? Are they teaching to look out for people saying they have lyme, then you know they're not really sick, and so on? Most of the stories like this I hear do involve the ER, particularly bad place to say you have lyme. Just, well, there are no words for it... Sorry!

Yes, yes, that is where I am heading.

Milk thistle is one that has always tested best for me early morning empty stomach before food. I take the paradise herbs brand which is 80% silymarin (200mg silymarin, 250mg capsule). It's a pretty small capsule. Haven't heard of any extended release in the milk thistle, but so much out there. I've never taken more than 1 at a time, never tested for more than 1 per day, but know someone who doesn't take pills steadily that occasionally takes 2 or 3 of these. I imagine milk thistle goes well with most other supplements, don't know of any specifically a bad combination, but perhaps there are some. I like to space out taking other herbs/supplements at least 2 minutes to let the body take in the energy of each one separately, and my pendulum generally seems to agree with this when I ask.

I am going. Just decided. Had wanted to go to something like this, but preferably in a few months. But, sounds like the next one like this in the US will be very likely more than a year away (and possibly a few years away), so this one it is. My wife my attend as well, or not, we'll see if she's interested.

Oh, I see, I had missed (or forgotten? who knows...) that part of the story of starting and things getting too much worse and then stopping. Gosh, this is likely some combination of two things: - he is really sick and has lots of bugs and the treatment you were using was VERY effective; or - the regular detox pathways for removing toxins and otherwise dealing with die-off are less than ideal So maybe you need something less effective (but still somewhat effective) or maybe different/better detox support. Was it antibiotics or primarily antibiotics that were used? If so, perhaps consider try again but with herbals, perhaps best with not some souped-up extra-strong herbal combination to really clobber things, but some that are at least somewhat effective. There are many things to help with detox, and I'm not sure what you've been using, and how confident you are in it. Perhaps something like "the Buhner herbs" would be useful. There are several herbs there that can be used individually or in combination. Some help with killing, some help with detox support, and some do both. I don't think there really the best, but I know they are somewhat effective, and perhaps that is what your son would do best on now. Just trying to think of how to get you through this here.

I'll answer just the lyme part of your question. A negative lyme titers test will not rule out lyme by any stretch. The standard testing is very unreliable. There are better tests, which will be less unreliable but still unreliable. For more information on lyme and ideas regarding how to pursue/consider whether lyme is an issue for your son, probably better to post a question on the lyme forum of this group of forums. Michael

Thanks for the link, Wendy. I bought the BLt (#1) somehow about a year ago when I was getting started. It was pretty useful for a while. At this point, I can't find anyone selling these products on the web, which is where I bought the BLt before. How did you buy the #2? Is this company selling their product direct via phone? Michael

I have gotten relief from light sensitivity (fluorescent lights, bright lights, flashing lights) with lyme treatment. It's not all gone yet but a lot better. Not sure if you're asking about that, or, are you sensitive now from the doxy?

Fixit, seriously, I think you may be overthinking this lyme and myco-p thing. The tests and symptoms seem to support that your son has both going on. Most lyme docs do not focus on myco-p, because their experience is that if they focus on lyme and any other coinfections (bartonella, babesia), the myco-p will get taken care of in that process. You are not going to find out which came first, or what caused what. They may have come at same time, or not. These are fine questions to wonder about, I think we all do it, but I wonder/fear that maybe you are being distracted by these questions when ultimately the answer will not come and would not, in any event, give you guidance in what next steps to take.

I think the Byron White herbs (A-Bart et al) are very carefully put together in combination, and I think mixing it with anything like juice or food is going to limit effectiveness. Some people absolutely herx bad from 1 drop, while others will not herx with many drops. I started these very late in my treatment so did not experience too much sensitivity to it, but even so I tested to start at just 1 drop per day, and it went up over time. Regarding help for taste of A-Bart, perhaps putting in small amount of WARM water for a couple minutes to get rid of alcohol will help some. It will still taste bad, though. I really don't know of one good site for herbs. I have found my herbs in a very cobbled-together manner over time. The Buhner book decribes many, and that is a nice start--but just one protocol. There are many many other useful herbs.

Timing of herbs really depends on the herb and the individual. Some are normally best first thing in morning, some are really best last thing at night, some better with food like breakfast or dinner. Sometimes specifics matter. I test for A-Bart 5 minutes before meal (no, not 10, not 0, 5) and then A-L during meal, but then need at least 30 minutes separating them. These are fairly potent blends of herbs made by the same company, so they need their own time to get their energies processed. In the beginning when I started taking GSE, it had to be with meal, and now it's best empty stomach. I think I know why--it's brutal on the insides (like esophagus) when they are damaged, so mixing with food made it easier. Now, more healed without food is handled and more potent. On switching over, only thing I'd suggest you consider is, what does ART say in terms of abx plus herbs. For quite a while, the combination was great for me, much better than either could provide.

Surprised to see LabCorp say it because of "just" 23 and 41, but reality is 23 and 41 together is very suspicious, particularly if there are any symptoms of note. Worthy also of getting an LLMD to investigate thoroughly.

I think the myco-p alone is easier to treat than lyme. I think, generally LLMD's when treating lyme, will not treat myco-p specifically, they just treat the lyme and it gets taken care with those abx. Myco p can be tick-borne too, just like lyme, but of course it can be found in many places. A number of LLMD's believe that severely depressed CD57, such as the 16 you report above, are from lyme+myco-p.

Looks a lot like a chronic infection, as you say. Regarding your question on the PCR, a false negative on a lyme PCR is quite common, so, if that was a lyme PCR, yes, could easily be false negative. May be the case for PCR's for other infections, don't know about those. By the way, all I needed were my symptoms and band 41 positive and band 39 IND for my lyme doc to say I had lyme. He felt the 39 IND was all he needed to see. It is the most specific for lyme. He considers IND's as positives, of course not everybody does. I'm not an expert on the lyme dot blot test, didn't have it done myself, but if it found the DNA of lyme in 2 of 3 samples, I would imagine that is pretty definitive proof that there is at least some level of lyme infection. The CD57 is theoretically another piece of the puzzle showing lyme, but I have a feeling your son is too young for that to be considered reliable for many docs. How old is he? I think age 13-15 is range when kids supposedly start really making the natural killer cells measured by that test. With lyme infection, I really don't think you're going to make much headway with the other infections unless you address the lyme infection. They can be addressed all at the same time, and that is often the best approach. Addressing parasites/worms can be very helpful as part of dealing with chronic infections, as these infections support each other. The big question on my mind is, what type of a doctor are you seeing, and what did they say about the dot blot test results, and what did they recommend?

Wendy, googling I can't find anything legitimate on Crypto Plus (just things that obviously aren't what you're talking about). Can you help me out with more information, such as manufacturer or something?

I have been on A-Bart for a while (as well as Byron White's lyme formula, A-L), and also GSE. Think they're all pretty good.

I have Aetna and it has been covered several times (never denied).

For example, there is Tic Tamer, from Native Remedies, a homeopathic for tics. This is not the classical homeopathy, but a remedy for that symptom. The classical homeopaths generally seem to not like that approach to homeopathy. I'm not giving an opinion on it one way or the other, but this is one I ran across and tried a couple years ago. It didn't do much for me, but I had a lot of other circumstances, so wouldn't read much into that.

That result does not scream lyme, but does not clearly say there is no lyme either. [Although, some lyme docs do treat a positive on band 41 only as lyme, with the idea that most patients get better from the treatment, and their goal is more to help the patient than to prove what condition they had. Of course, if/when they don't respond to lyme treatment, then they need to keep looking for other potential causes.] What you might do depends a bit more on the details of your situation--what leads you to believe PANDAS is involved, what testing has confirmed it, what treatment has been given, what was the response to treatment, what symptoms are there that aren't typical PANDAS (such as chronic fatigue or joint pain)?

I agree with LLM. More of the same tests is just going to give you more wishy-washy-ness. You have plenty of +'s and IND's there, enough to warrant serious lyme consideration. Plenty of people with definite lyme have had much fewer of the +/IND on the test results. Band 31 and 34 are both pretty significant. I would go to an LLMD. If, after just a history and evaluation and discussion, things are still not clear, a trial of antibiotics can help to draw out a positive on another test. Given you're already giving antibiotics, what's the harm in trying some that happen to be geared at lyme for a little while, see the reaction, see how it affects the tests if there is still a doubt, that will give you a better look at where things are.

Great news!

nope, not too late, plenty of people have done it after being sick even longer, lots of people don't know what's behind it until later

Happened with me, yes, the SSRI's drove me much crazier than I was. It happens with lyme disease, all those neuropsychiatric drugs are just true crap shoots. The psychiatric problems go away with treatment, trick is to get treated as quickly as possible, and do what you need to do to manage symptoms in the meantime.