Hopeny

My DD9 had herxing when she started Rifampin/Zith combo, rages mood etc, for suspected Bartonella, she tested negative but had signs so we decided to try Rifampin. We knew she had Lyme and other co infections. Rifampin was the only thing that lowered her ASO to a completely normal level. She has been on it for a year and we are weaning off. She is, and I hate to jinx myself, almost entirely well. The herxing was a bit prolonged but may have been exacerbated by too much MTHF. We plowed through it because it was manageable and I am glad we did. The reaction your DS is having would make me question Lyme/Bartonella. With the greatest respect from what I understand Dr L is not in any way a Lyme/co infection subject matter expert. Consider the steroid burst carefully because if you do have Lyme, it can exacerbate it. I am not a doctor and this is not medical advice but my view is Bart must be treated, and it takes a long time. Some classic Bart symptoms include rages, mood swings, foot pain especially in the morning and stretch mark looking marks (My thin DD had some appear on her arm a few days after starting Rifampin, that cinched it for me that she had it) Sorry you are going through this, it is so frustrating, but maybe you have stumbled on another piece of the puzzle

I agree I would pull the Tindamax. Our LLD (Same as LLM's) and I agreed not to go Tindamax route with DD who is almost at 100%, because a number of people have regressions with it. Instead we are pulsing 3 weeks on, 1 off to try to get at the cyst form. We just got through the first week of abx in I've lost count but over a year and it went fine. I find Burbur by Nutramedix really helps with herxing, 5 drops in water every four hours. Hugs to you.

How much -LMTHF? Too much caused rages, skin picking and other stuff for my DD. My DD currently takes 200 MCG ( that's MICROGRAMS) a few times a week with B12 in the methylcobalamin form. I was giving her 2.5 MG (10 times the current amount) daily. It was WAY too much. I stopped for a long time and have now started back with the 200 MCG which she seems to tolerate. LLM on this boards uses a minute does of 67MCG if I recall correctly. She has one copy of 677T. I was hoping LMTHF would be the be all end all for us, it wasn't. My DD has Lyme & Co, PANDAS (with the elevated ASO component) and Myco. Lyme definitely waxes and wanes, that's why she went so long undiagnosed. We never put the pieces together until she completely tanked. With time and treatment she is at about 98%. It takes time and unfortunately some trial and error.

We've had a very good experience with Samento but not so good with Banderol. I am also a huge fan of Burbur for detox. The real Cowden protocol is quite complex so I have just stuck with the few my docs recommended. I do agree with the crowd, if no symptoms just wait. Our integrative MD has recommended Samento generally as a good anti microbial for general use. We are tapering off DD's Lyme abx treatment however I think I will keep her on Samento for a good long while. Once bitten twice shy.

Sorry you had to go through that. Yes I would never go to a major medical center just for PANDAS or Lyme. In fact we had a HORRENDOUS experience with a so called Lyme expert rheumatologist at a/the top NYC hospital. Both my kids have an immune complement disorder (discovered through this experience) so its not just a PANDAS/Lyme Dx anymore - though I did drop the PANDAS dx and chronic Lyme quite a number of times I have not taken the Lyme/PANDAS DD there yet but I likely will. IVIG is looming for the immune problem so I want to see how they handle the non PANDAS kid first. I was pleasantly surprised to learn about the study they are doing, though its out of research dept. Will be interesting to see how the tide turns when they eventually publish.

Can you elaborate on the sleep issues? Were adenoids enlarged pre T&A? was there snoring? My DD4 has sleep issues and I have wondered about this. Good luck

Hi I am so sorry you are going through this. Our current LLMD Dr. M who I really like told me that IV abx are not a be all end all. My DD had many psych and physical symptoms, including suicidal obsessions,.I think we have now reached the point that she is on abx longer than she had the undiagnosed Lyme infection. We are starting to work to wean her off abx, it's been about 18 months of treatment starting in January 2012. She has some residual visual issues that we are eventually going to tackle with vision therapy. Your son can get better though it seems impossible when you are going through something like this. Would you consider contacting Dr. H (I can PM you if you don't know who I mean) in upstate NY? He has a long wait list but you can see the PA in the meantime who discusses all cases with him and get on his regimine. He is supposed to be amazing, I love my current LLMD but I don't think he is taking new patients at the moment. Just a thought, I know Dr. H. has helped many difficult cases. FWIW I have NEVER heard an ILADS LLMD (we have seen 3) say they wouldn't treat with IV without a + Western Blot. It just doesn't make any sense at all. There is also a doctor I know of that uses IV pretty aggressively I think in MD (used to be DC but I may be reversing that) I can PM you his name too. If things are tanking maybe a new doc is in order. Hugs to you Here are some of my ideas random order *(I am not a doctor, these are just my experiences, please consult a doctor) : 1)Higher dose Amoxicillin for us sent my DD over the edge, she became scary paranoid (told me she was afraid her clothes were going to hurt her etc) Personally I have been under-impressed with it generally. We pulled her off, gave 5 days of Doxy and then put her on a Biaxin/Augmentin (yes I know its the same stuff but somehow we didn't see the Amox reaction with this combo.) Then we did 60 days of plain Doxy. DD then went on Rifampin/Ztihromax, since last November for Bart. She is much, much, much, much better. Please discuss with your doctor one of the typically Lyme combos: Biaxin/augmentin, Rifampin/Zithromax, or Cefdinir/Zithromax. you need something to treat the bart, the preferred drug is Rifampin. I just share that my younger DD had a terrifying reaction to Bactrim, some have been ok with it but IMO better to use Rifampin and older and more stable abx. 2) We had a tremendous result using a compounded low dose Arteminisin from Hopkinton Compounding Pharmacy. Leg pain that had been present for 2 + years was gone in a week. 3) Folic acid - if your son has MTHR 677T this could cause issues. We were using way too much L-MTHF and it was causing symptoms, rages and skin picking. When we stopped those symptoms abated. 4) Cats Claw - I think its Buhner who likes this but many prefer Samento which is a refined version of Cats Claw and is missing a key ingredient (can't reacall which) which I know some say can cause problems 5) Burbur (nutramedix) - I have had a lot of success using this for Herxing symptoms, five drops in water every four hours really seem to work. 6) I think LLM is on a good track, maybe consider pulling all the supps and starting slowly 1 by 1. It may be the combinations making it worse though personally I would try a different abx combo as well. 7) Epsom salts have Manganese (a Lyme feeder) in them and other minerals. Maybe just try regular baths for a week. I also used Dead Sea Salts but they do have Manganese too. There are varied views on using Magnesium as well and maybe where you are with treatment that might be something to cut out.

On a related note, we were at CHOP this week to see immunology for the non PANS DD. (as an aside, they were great and I was very happy with the visit though I know others may have had different experiences) When we went to do the bloodwork we were asked to participate in a study for "The Genetic Causes of Pediatric Disorders" studying "asthma, allergies, ADHD, autism and how easily some children get infections" doing DNA analysis. They are going to have 100,000 participants and they are half way through. They are years away from publishing but will be unlock more of the mysteries we are facing. I was very encouraged to learn about this study.

Based on your posting about outdoor activities, have you explored Lyme? & Co infections?

Thank you all!

Wishing all the best for you. It is so very scary. Please keep us posted.

I just started using this on our integrative drs advice. For DD4 who has sleep issues, low serotonin on the OAT test (HIAA I think) and a high Quinninc/HIAA ratio (I know I badly botched that) dr said it will help sleep and serotonin. Then I went back and checked DD9 OAT levels and she too had very low HIAA/serotonin. She has had some bumpy mood issues so I thought I would try it too for her - not sure why but Dr never recommended for DD9. We tried Zoloft once for DD9 at her worst and she seemed to get the beginning of serotonin syndrome so we stopped. DD9 has single copy 677T but DD4 does not have either MTHFR mutation. I am giving both 100MG. I am seeing improved sleep for DD4 (not perfect but better) and DD9 has taken twice so far but mood seems very good since, - have also started a B complex with very low dose L-5MTHF a few times a week so that may be helping too. Just wondering if others have used this, what the success is and if there have been any adverse effects? Especially with an MTHF mutation? Thank you in advance

Sorry we have not used it but you may also want to try a post on lymenet.org. Sometimes when I have a very specific Lyme question I use that board. Good luck

We have been using Rifampin/Zith combo, plus supps and some cowden herbs, for almost a year now for Bart with psych symptoms. DD9 has Lyme & Co, PANDAS with the strep component, Mycoplasma along with an underlying immune complement deficiency (options for this would be IVIG). We saw a slow but significant improvement with Rifampin. We are now in a tweaking phase. DD9 is mostly well however recently had mentioned some suicidal thoughts, along with a handwriting tank, yet is happy most all of the time. BTW in the peak of Lyme symptoms my DD had bad stomach pains which are now gone. I have found that some things don't seem to work and then you stumble on something that does. Though I liked my first Lyme doc I just moved to another to get us to the next level. We also see an integrative MD and an immunologist. (we have a new one as we have moved, who really doesn't like long term abx but is very pro ivig) my DD4 has a newer case of Lyme and also the complement deficiency, I am actually taking her to CHOP immunology which I do not think is an open minded institution, even though we have seen LLMD's for her and also the integrative MD, for a second opinion as her primary issue seems to be the immune problem everything else follows on. I assume for the cardiac issues you are seeing a cardiologist? In Cure Unknown Pamela Weintraub wrote that her husband essentially has to go on and off Doxy for Lyme for life. Others seem to be able to reach a cure. For some people it's just one thing and for others its a whole bunch of things. I think after six months which is a good shot its time to try something else.

I found this on the Lymenet site: http://www.cbc.ca/natureofthings/episodes/ticked-off-the-mystery-of-lyme-disease

Thank you, I recall Katie Couric's website requesting people's Lyme stories, I look forward to seeing this

Congratulations great news! Wishing you continued up and up

I'm glad the removal is helping. What supplement is this?

FWIW DD4 had a bullseye last year (older DD has chronic Lyme) She was started on high dose amox 3x per day literally within an hour of me seeing it. (so thankful for my doc who called it in on a Saturday night for me) We treated for six weeks. She started to have symptoms (headache, lethargy) a couple of weeks after stopping abx and then tested CDC IGM positive with a Lyme specific band (39). We treated four months with cefdinir/zith and she seems to be symptom free. She has a high positive + ELISA but no WB bands, however has no symptoms so we are not treating. DD has an immune issue so that may be why the first treatment didn't work. it was very upsetting.

Hi congratulations on your pregnancy! I struggled to get pregnant with second DD and it is such a blessing. Personally if I had it to do over, I am not sure but think I may have passed some type of Lyme to my kids, I would have taken amox for most of the pregnancy. I am not a doctor but it seems better to treat aggressively than to possibly deal with Lyme. We have had a horrible experience with Bactrim and I have had two doctors tell me they think it should be taken off the market. Others have used it successfully but if you try it be careful and watchful. Enjoy your pregnancy and try not to worry too much

Hi sorry you are going through this. I've had these types of days myself. Did I read correctly to see that you had added a new supplement and then saw the behavior? If that's a yes then I would definitely discontinue it. Also have you considered Bartonella, which can exist without Lyme, and can definitely cause this type of behavior? It can also cause tics and OCD. It is spread not only by ticks but many kittens/cats are infected along with lice and fleas who also spread it. It is very hard to test for. Can cause these symptoms, rashes, stretch marks and foot pain. I used an herb from Nutramedix called Burbur to calm Bartonella flare ups like this. Five drops in water. It worked within 30 minutes. I would say if you try Burbur and it works then its worth considering a Bartonella evaluation with an LLMD. Sorry I can't recall if you have done that already. My DD has never tested positive for Bart but had symptoms so we treated and symptoms went away. Hang in there

I am glad you found some possible answers. Please note that bartonella is difficult to detect so false negative tests are common. We have used rifampin/Zithromax combo for almost 11 months to treat bartonella. Typically there is a long herximer reaction when treating bartonella which is transmitted by ticks, cats, fleas, lice and other hosts. This means you may see a burst in increase of symptoms from organism die off when starting ti treat bartonella. rThere are also some good herbal remedies you can use, I have found burbur by nutramedix to be very effective in calming down rages and other bartonella symptoms. It is important to find a knowledgable llmd to help you with Bart treatment. I know that others gave posted that ivig may be ineffective when dealing with Lyme, bartonella etc . I wish you all the best

I was giving WAY too much MTHF for my DD's single copy 677T. She developed a skin picking compulsion and other behavioral issues that went away when I stopped. Now I give a minute dose of MTHF only rarely and B12.

Thanks everyone. I am working to figure out both of my kids immune picture. The IVIG is actually for my DD4, the non PANS kid. DD4 had a new case of Lyme last August and we are not sure if it is gone but she does not exhibit symptoms. We have just relocated to the Cherry Hill, NJ and are working with a new immunologist who is highly recommending IVIG. Previously both kids saw Dr B and DD4 had a second hospital based well known NYC immunologist. IVIG was batted around as a possibility once or twice before but never really discussed, new immunologist thinks at least DD4 and possibly both need it. DD4 has been sick constantly since birth. We uncovered a protein deficiency (Mannose Binding Lectin) that causes an immune complement system disorder. The kid gets everything that comes her way and has no HIB immunity despite an extra prevnar vaccine last October. Even Dr B recommended vaccines for DD4 because of her immune issues. New immunologist says no live vaccines. She requires extra abx everytime she is sick. Currently we are batteling a mouth infection that has recurred since a dental cleaning. (thankfully we were able to go to the dental clinic at CHOP and they took it very seriously even giving me the dentists cell phone number and bringing oral medicine in for a consult.) Our new immunologist is worried about her getting pneumonia etc. I am going for a second opinion at CHOP immunology for DD4 because the IVIG would need to be done there. The subcutaneous IVIG sounds a lot more desirable, I am so torn up about this because on the one hand she is only 4 but on the other hand what if she gets something really serious? She already had a mild case of whopping cough that was absolutely terrifying and really had me praying. my PANS DD9 has the same deficiency but not as severe and similar immune profile, but was not terribly sick when she was very little so somehow she seems to be able to manage a bit better. In the meantime I am trying supplements for both kids. New immunologist is very pro IVIG for both and thinks they need a two year course monthly. In the meantime DD4 had different results on the strep serotypes from two different labs, one lab had slightly better results. I just don't know what to do

The FDA has inadequate/almost no resources to inspect overseas. Personally I try to stick to us/ uk or teva from Israel. Dr reddy is an Indian company