Finally got a straight answer...

[lmkmip67]

I just had my phone consult with Dr. J. Now I nothing bad to say about the man, he is very sweet and incredibly brilliant. I did feel that we did not get a straight answer from the first visit. I finally pestered the office and he called me back. He said he feels Ian is dealing with Lyme. He said to stay on the combo of Augmentin and Azythromiacin, and wants to add in a cysts buster (I forget the name). Now I have a few questions from those with more experience here because between Dr. J's speaker phone and the fact that he tends to mumble a little, I may not have heard everything.

 

Ian had 3 rounds of Igenex testing, the first round was the whole 9 yards, 2.5 years ago. I posted the results here and was told it looked very Lyme-ie. I did not explore it at the time because it wasn't positive according to CDC standards, and we had not tried IVIG at the time. We made the decision to try IVIG as it was covered totally with our insurance. After 4 rounds of that and no results, we tested again, the western blot. He has less markers that time, but still some questionable results. Dr. B said lets try HG IVIG for 4 rounds since Ian had also gotten a vaccine before I realized he shouldn't. SO we did that, and still saw no improvement. One appointment Dr. B looked back at the initial Igenex tests and said, if he knew all he know then about Lyme, he would have called it a positive and highly encouraged me to call Dr. J. So I did. We saw him and did the WB again. Dr. J said he clearly was exposed to Lyme bacteria, but never did call with the test results. The third time he had less markers, but still one positive on a relevant lyme band. I had to call the office for the results. He said to stay on Dr. B's combo for the time being. I finally called back again because I didn't feel I had proper follow up from them, and they scheduled a phone consult for me. He called right back at the time appointed so I was very happy with that. He was very thorough and informative for the most part. He did say he feels it is Lyme, so lets add in the cyst buster. Now Ian has been on the combo of augmentin and azyth for 6 weeks. During this time (I should not have done two med changes at once, I am learning that) I also decided lets wean off prozac. Ian flared. Yeah, no kidding. lol So He has now been off prozac for 4 weeks. Last week he was NOT good. This week he is better, but he also has a nasty head cold. SO, here we go. Some of y questions.

 

Is augmentin and azyth a good combo for Lyme? Maybe when I thought he was flaring, was it perhaps some die off or herxing? I attributed it to the prozac weaning and the OCD flaring up, but maybe not? This week he is a bit better, OCD is down a bit, but still there much worse than on Prozac. He was just SO bad this week I notice any little improvement. So at this point I don't want to put him back on the prozac because we are introducing a new med combo and I want to see what is going on with that first.

 

Another question I have is if he tests almost positive the very first time (he was literally one + off, if I recall, what does it mean if with each of two more tests, he is less towards positive every time? I thought Dr. J said something the first appointment how they can stop making antibodies towards the Lyme long term if not treated? I did not ask this time, and so much info was tossed at me during the first visit, I admit I can't recall it all. But is that possible? I could dig out the tests and be more specific but I have to run to Lowes to get a piece to fix my kitchen sink (doing it myself since I am so poor from all this kid's dr.s visit, LOL).

 

I think my last question or two, what is the best combo for lyme? and if it is working, how long does it take to see real improvement? Sometimes I think I should just move to CT. lol I am trying to keep a sense of humor, and it is easier this week since Ian isn't quite as volatile.

 

Oh, one more. If he starts to herx, is there anything I can do to ease the symptoms since Dr. J did not really address detox.....

Thanks so much for humoring me. I am hoping FINALLY we are on the right path!

 

Lisa

 

Edited August 10, 2013 by lmkmip67

[PowPow]

I cannot answer any of these questions, really. I wanted to say that Dr J very, very successfully treated my teenage nephew for lyme. His symptoms were PANDAS-type symptoms. They did not do any of the fancy detox-y stuff integrative docs do & and my nephew did well. there were ups and down but Dr J was certainly a whole more straightforward, simple and CHEAPER than the integrative LLMD we went to.

 

Hope he gets better soon.

[lmkmip67]

That is good to hear. I am hoping we such some success too! Glad your nephew is feeling better!

[SSS]

Well, I just read that a certain legal issue may not be cleared up for Dr. J :-(. Incurring continuing costs for him, not sure how long he plans to stay in practice? I am not sure, don't want to start rumors, but, possibility.

Not sure where you live, and I do realize the initial appt. with a new LLMD is big bucks, but.... maybe something to think about?

It is very difficult to answer what are the best antibiotics for Lyme-

Some excellent books:

http://restormedicine.com/beginners-guide-to-lyme-disease/

 

This book is very current, and one of the best, IMO.

Edited August 11, 2013 by S & S

[LNN]

Is augmentin and azyth a good combo for Lyme? Maybe when I thought he was flaring, was it perhaps some die off or herxing? I attributed it to the prozac weaning and the OCD flaring up, but maybe not? This week he is a bit better, OCD is down a bit, but still there much worse than on Prozac. He was just SO bad this week I notice any little improvement. So at this point I don't want to put him back on the prozac because we are introducing a new med combo and I want to see what is going on with that first.

 

Another question I have is if he tests almost positive the very first time (he was literally one + off, if I recall, what does it mean if with each of two more tests, he is less towards positive every time? I thought Dr. J said something the first appointment how they can stop making antibodies towards the Lyme long term if not treated?

 

I think my last question or two, what is the best combo for lyme? and if it is working, how long does it take to see real improvement? Sometimes I think I should just move to CT. lol I am trying to keep a sense of humor, and it is easier this week since Ian isn't quite as volatile.

 

Oh, one more. If he starts to herx, is there anything I can do to ease the symptoms since Dr. J did not really address detox.....

There doesn't seem to be one "best" combo for lyme. It's common to use a + b for a few months and then b+c for a few months and then maybe b+e+f. A general rule of thumb is to use at least one extracellular abx (like augmentin) with one intracellular abx (like azith). My son did lyme treatment for 2.5 yrs and zith was always one of the abx in the combo. He started with zith + augmentin. Tho it did nothing for him until we also added bactrim (Septra), it does help many. So it's quite possible you've been seeing herxing (and/or some withdrawal symptoms from prozac).

 

I think once you hit on an effective combo, you can hope to see improvement - in that you start to think you're on the right path - in the first few months. But it's a lot of ups and downs. When my son started his trio (zith+augmentin+bactrim), I saw improvements in 3 weeks. And he climbed upward for about 2 months. Then he stalled and we had to change things up and he herxed badly, sliding back downward in terms of OCD and cognitive gains. Then he'd climb back up a little further. It's a lot of two steps forward, one back. When herxes started, I always doubted myself - did we just make an effective change that was killing more stuff? Or did we just remove something that was really helping and now with that magic thing gone, was the lyme running rampant? Herxes are a lot like flares and both bring lots of inflammation. So it's always hard to see things for what they are until it's past. It was only after the first year that I could look back and see that his worst days were still better than what they'd been before we started lyme treatment. And sometimes you uncover other things you weren't expecting, like parasites or metals or proluria or mold or other infections or whatever...it's exhausting. But it eventually gets better.

 

I've heard some say you may make less antibodies if you've had chronic lyme. I think the theory is that after a time, lyme learns to hide from the immune system (becoming intracellular, hiding in biofilms or going into cyst form due to prolonged abx use) and also that it may start to share/mix DNA with the host and seem less alien. But I don't think there's any research to prove it one way or the other. It's also hard to say what effect multiple IVIGs may have had, how donor antibodies could influence what the body does or doesn't see in regards to a chronic infection. IDK. What I do know is that if he was one band away from CDC positive and his treatments haven't addressed lyme, I'd be suspicious that it's still there.

 

As for detox, you can search the archives (or google "detox + lyme + acn") and find some long posts in the '10-'11 era when the lyme forum was first launched. It was a big topic at the time. I used to post long lists of things that are supposed to help - milk thistle, charcoal, bentonite clay, chlorella, NAC, alpha lipoic acid, epsom salt baths - and they do help some people. But since my methylation kick, I've learned that some people can't handle these things because of genetic mutations (mostly CBS/sulfate issues). If you do use things like charcoal or clay, you need to take it away from other supplements, as they act like little sponges and soak up everything, not just toxins. They can also alter electrolyte balance, so some practioners recommend using only one capulse/day or once/week. Motrin also works wonders - not for detox but to reduce inflammation. Also - remember to use lots of probiotics. This is another individual thing - some do well on one thing and others don't. But fwiw, my son needs brands that are high in bifido strains. Most brands are high in lactobacillus strains. So you may want to rotate or try different brands/doses until you find something that seems to work well. Butyrate also inhibits yeast and helps strengthen the BBB but it's basically fermented food in a capsule, so not good for those who can't handle sulfur foods like sauerkraut, gassy veggies...and contrary to what my son claims, it does not make your farts smell like petunias.

 

One final thought - anger/rages were always a big herx symptom for my son. In addition to motrin, I found that a little (50mg) niacin (vitamin B3) helps him calm down. If things get hairy on you one day, pick up some niacin from any healthfood store or maybe even CVS (most only carry large doses like 500mg). Open the capsule and sprinkle a little into any emptry gel cap or into some food. You may see a calming effect within the hour. It may not work - not everyone reacts the same way. But it's helped me more than once.

 

Fingers crossed that S&S is wrong about the ramifications of the legal woes, but if not, my LLMD (Dr M) is 30 min north of Dr J and I can highly recommend him. But he does have a wait list for new patients. So another thing to keep in mind.

Edited August 11, 2013 by LLM

[lmkmip67]

Thanks all! There is an LLMD not too far from me that I can likely get in with if needed. I think she is even one of the speakers at the conference coming up this fall. I decided on Dr. J simply because he and Dr. B converse back and forth. But I wouldn't hesitate to move to one closer to home. if necessary I will ask around for more names if it comes to that. He has had legal woes for a while and so far has still managed to keep going. Hopefully he does for a while longer. But in the mean time we will try this med combo and see how it goes.

[Hopeny]

Hi I have taken my little one to Dr J (3 turning 4), my older one to Dr. L in upstate NY and both kids to Dr B. They are all amazing but for us we did not get to better without adding supplements which none of them use. In the lab, Bb is seen to mutate to 3 forms, L-shape, cyst and then hiding in biofilms which it is theorized is why the tests are so wacky. It has never been confirmed that this happens in the body but it seems to make sense. So Dr J is talking to you about using Tindamax probably. you need to go very slow with that, it can cause a major herx.

So I personally don't go by the tests except directionally, my view is that is if you have one lyme specific band, IGG, IGM or IND, combined with symptoms, then it indicates Lyme. During our last LLMD visit, DD9 (hallelujah finally symptom free) had one IGM positive Lyme specific band. I said "I don't really like that Band 23" , LLMD said "I don't like it either" and we continued to make plans to take her off antibiotics. There is a very good detailed explanation of the Western Blot in Cure Unknown by Pamela Weintraub, if you are dealing with lyme I would highly recommend that book. As LLM has explained there is no perfect remedy that fits all. DD9 has been on Amox, Doxy, Biaxin, ZIth, Augmentin and Rifampin. DD3/4 has been on Zith, Cefdinir and Amox with a scary awful herx to Bactrim. For DD9, a supplement seems to have gotten us through the last mile. FWIW, current LLMD told me he thinks ZIth is very good for Lyme even though the Lyme bible Burrascano guidelines do not say so. I would second LLM's LLMD recommendation, Dr. M. We waited a year to see him and I think it was worth it. So I would say to consider the combo the recommend and also try to find someone who can treat with supplements and I would definitely consider Dr. M. Sorry this is choppy, we are in the midst of moving but I have been meaning to respond. Best to you.

[lmkmip67]

Hi I have taken my little one to Dr J (3 turning 4), my older one to Dr. L in upstate NY and both kids to Dr B. They are all amazing but for us we did not get to better without adding supplements which none of them use. In the lab, Bb is seen to mutate to 3 forms, L-shape, cyst and then hiding in biofilms which it is theorized is why the tests are so wacky. It has never been confirmed that this happens in the body but it seems to make sense. So Dr J is talking to you about using Tindamax probably. you need to go very slow with that, it can cause a major herx.

So I personally don't go by the tests except directionally, my view is that is if you have one lyme specific band, IGG, IGM or IND, combined with symptoms, then it indicates Lyme. During our last LLMD visit, DD9 (hallelujah finally symptom free) had one IGM positive Lyme specific band. I said "I don't really like that Band 23" , LLMD said "I don't like it either" and we continued to make plans to take her off antibiotics. There is a very good detailed explanation of the Western Blot in Cure Unknown by Pamela Weintraub, if you are dealing with lyme I would highly recommend that book. As LLM has explained there is no perfect remedy that fits all. DD9 has been on Amox, Doxy, Biaxin, ZIth, Augmentin and Rifampin. DD3/4 has been on Zith, Cefdinir and Amox with a scary awful herx to Bactrim. For DD9, a supplement seems to have gotten us through the last mile. FWIW, current LLMD told me he thinks ZIth is very good for Lyme even though the Lyme bible Burrascano guidelines do not say so. I would second LLM's LLMD recommendation, Dr. M. We waited a year to see him and I think it was worth it. So I would say to consider the combo the recommend and also try to find someone who can treat with supplements and I would definitely consider Dr. M. Sorry this is choppy, we are in the midst of moving but I have been meaning to respond. Best to you.

Thanks for all of the info. Taking notes, and will certainly keep supplements in mind. I am curious to see how Ian does on the TIndamax. He did give orders to go very slow with it.