Hopeny

Great news! Glad you are looking into Lyme/Bart too - bicillin shots are also used for Lyme

Our ID doc diagnosed DD with PANDAS and referred us to Dr. B. She was also dealing with Lyme and a bunch of other infections But he is unusual, most of them tow the party line.

You can also mix enhansa into juice. I'm a big fan of it too. My mono exhaustion was beyond anything I have ever experienced. I was at a conference when I got the dx and I would lgo back to my hotel to sleep In between exhibit hall breaks. My dr originally thought it was strep. Could not manage more thank two hours of activity. Exhaustion is not even a strong enough word for it. I felt like my body was broken down.

I had Mono, I was told you are not supposed to take antibiotics when you have Mono - this happened to me and I broke out in red bumps all over my body. I would recommend cheking with your doctor. They gave me a steroid shot for my throat which had exploded in white lumps. Otherwise no treatment, it took almost a year for me to fully recover. I felt quite sick for at least two months. Sorry you are going through this. And I don't mean to be argumentative but as an aside Lyme and other tick borne infections (rocky mountain spotted fever, tick relapsing fever, etc)are found everywhere in the U.S. due to bird migration, though it is more prevalent in certain states/regions.

FWIW I asked DD's LLMD about CD57 and he said that Ginger Savley (sp?) who did the original work with CD57/was a big proponent of it, at the recent ILADS conference advised that after looking at thousands of patient records, she could not correlate the data with CD57 and is no longer using it. I know many people do, I'm just putting it out there. In regards to Doxy even though it says not to, most people take it with food. With Vitamin D we waited a while about six months into treatment, there are different schools of thought, some that D feeds Lyme and some that you need D to rebuild the body even if it feeds Lyme. If you are really feeling bad maybe eliminate it and add back, Have you been completely cleared of Babesia? The reason I ask is that I understand CoQ10 feeds Babesia and should not be taken by someone who has babs. Also one thing we have found Burbur by Nutramedix really helps with detox/herxing. My DD9 is taking 5 drops, I am not sure the adult dose but it is out there on the internet. It may be something for your to consider, I just give it far away from the abx. Oh and yes, Lyme can come and go like that. You may need to consider treating when symptoms crop up going forward. Good luck

Turmeric has so many uses. My dd is on for yeast and inflammation . I like the enhansa brand for quality and consistency, it seems to be a proprietary blend. Like jag I'd like to take it myself. If you get a script your insurance may cover it. Lee silsby had some good info on it on their website.

There was a recent article I saw about a link between miralax and autism , sorry I don't have it handy but if I can find I will post. It seems like there might be a better alternative

That's a good point in regards to the feet, Bart can commonly cause rages and foot sole pain. My DD tested negative but we decided to treat anyway and 4 days after starting Rifampin, stretch marks appeared in the crook of her arm - I took that as pretty compelling proof of Bart which commonly causes stretch marks. You may have been hitting some of the symptoms/bacteria with the PANDAS treatment which is why you saw some alleviation but not all.

Our integrative MD told us 5 drops Burbur in water, up to every four hours, DD is 9/65 pounds. I also bought some of their parsley for the same thing. I find the Burbur extremely effective. Integrative also suggested two charcoal capsules but its hard for me to imagine DD ever agreeing to take this so I have not used. I also found I was giving too much MTHF, I have cut the dose/frequency way down and this has helped. I was giving Burbur daily but we don't seem to need anymore, I just use on ocassion. Another thing you may want to look into is Enhansa (Tumeric) - it helps with inflammation and I believe detox too, maybe yeast as well. We get ours by Rx from Lee Silsby. Good luck with the doxy. When all else fails I find a (monitored) bath with Ahava dead sea salts is also very calming for DD (lol maybe I need to do that myself).

One thought I have had is that those that have elevated Mycoplasma titers should consider an evaluation by an LLMD. It seems to go hand and hand with Lyme. (The book Lab 257 has an interetsing theory about why this is) For us, the obsessions and compulsions seem related to PANDAS. The joint pain, lethargy, low self confidence, rage, neuropathy, eye issues, upset issues etc seem to be from Lyme & Co. We got the Lyme dx first and PANDAS second, I resisted the PANDAS diagnosis for some time. The PANDAS symptoms resolved rather rapidly. Lyme has been more difficult. I think I read somewhere on this board, paraphrasing for PANDAS you put on your boxing gloves, the Lyme fight is slow and long. Maybe one is a battle and the other a war? I will say, so thankfully, my daughter is much, much, much better. Nickelmama I cna't recall if I told you already but consider trying Burbur for rages, it really seemed to help DD.

We just started using transdermal B12 from lee silsby compounding (makers of enhansa) it's a cream that you rub in. We also got trabsdermal nac. I am going to use the b12 every other day with the mthf. 500 Mcg of mthf every other day seems right for dd 65 pounds with one copy of 677t. Higher doses seem to have a negative effect on her too early to tell but will post if I see any changes positive or negative .

My advice is to speak clearly/loudly, he is a more seasoned fellow And just not to be surprised the office is sort of bare bones, not surprising as he has been drained by the case, just giving you the heads up on that. Today his case is bing reviewed so positive vibes and thoughts to Dr J so this never happens to any of our doctors again. He is an amazing and caring doctor. My daughter spontaneously hugged him when we were there. 5 may be a bit early though traffic on 95 can get really bad. I think 6 would be safe for you. There is not really much to do in the immediate vicinty of his office. As Tamistwins wrote you will find a parking permit with your name taped to his door which you need to go back and put into the car. After your visit you may want to post on the Lyme board for feedback. Good for you for taking this step to explore Lyme, i am not sure of your history but it seems to be a factor in many of the PANDAS kids and it is easily misdiagnosed/dismissed. Good luck

Thanks all, I can't get her to swallow the pill now even though I cut it in half. There were some liquid forms I will look into and will review the Burrascano guidlines as well. I do give the supps at the same time as antibiotics. its really hard to cram all that in so I will ask about time away from abx, I know Doxy is a problem with magnesium but she is not on that now

Since I just got this today I figured I will post, another warining about Zith Azithromycin (Zithromax or Zmax): Drug Safety Communication - Risk of Potentially Fatal Heart Rhythms AUDIENCE: Family Practice, Patient, Pharmacy, Health Professional ISSUE: FDA is warning the public that azithromycin (Zithromax or Zmax) can cause abnormal changes in the electrical activity of the heart that may lead to a potentially fatal irregular heart rhythm. Patients at particular risk for developing this condition include those with known risk factors such as existing QT interval prolongation, low blood levels of potassium or magnesium, a slower than normal heart rate, or use of certain drugs used to treat abnormal heart rhythms, or arrhythmias. FDA has issued a Drug Safety Communication today as a result of our review of a study by medical researchers as well as another study by a manufacturer of the drug that assessed the potential for azithromycin to cause abnormal changes in the electrical activity of the heart. FDA previously released a Statement on May 17, 2012, about a study that compared the risks of cardiovascular death in patients treated with the antibacterial drugs azithromycin, amoxicillin, ciprofloxacin (Cipro), and levofloxacin (Levaquin), or no antibacterial drug. The study reported an increase in cardiovascular deaths, and in the risk of death from any cause, in persons treated with a 5-day course of azithromycin (Zithromax) compared to persons treated with amoxicillin, ciprofloxacin, or no drug. The risks of cardiovascular death associated with levofloxacin treatment were similar to those associated with azithromycin treatment. BACKGROUND: Azithromycin is marketed under the brand names Zithromax and Zmax. Change to “FDA-approved indications for azithromycin include: acute bacterial exacerbations of chronic obstructive pulmonary disease, acute bacterial sinusitis, community-acquired pneumonia, pharyngitis/tonsillitis, uncomplicated skin and skin structure infections, urethritis and cervicitis, genital ulcer disease RECOMMENDATION: Health care professionals should consider the risk of torsades de pointes and fatal heart rhythms with azithromycin when considering treatment options for patients who are already at risk for cardiovascular events. FDA notes that the potential risk of QT prolongation with azithromycin should be placed in appropriate context when choosing an antibacterial drug: Alternative drugs in the macrolide class, or non-macrolides such as the fluoroquinolones, also have the potential for QT prolongation or other significant side effects that should be considered when choosing an antibacterial drug. Healthcare professionals and patients are encouraged to report adverse events or side effects related to the use of these products to the FDA's MedWatch Safety Information and Adverse Event Reporting Program: •Complete and submit the report Online: www.fda.gov/MedWatch/report.htm •Download form or call 1-800-332-1088 to request a reporting form, then complete and return to the address on the pre-addressed form, or submit by fax to 1-800-FDA-0178 Read the complete MedWatch Safety Alert, including a link to the Drug Safety Communication, at: http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm343350.htm

DD has taken 65 days of Doxy suspension, she hates the taste, really fights me on it. Also Doxy doesn't touch strep at all and we have that issue too, although being on RIfampin I think we have the strep well covered. After reading this though I may take a fresh look at Doxy again. Originally this report not worry me because it was mostly elderly patients, however seeing as Lyme patients typically have low magnesium, this gave me pause today reading it. DD also has one 677T mutation which can be associated with cardiac issues. Sigh. Arial95 I may talk to dr about augmentin/Rifampin combo too. Here is the warning letter, by the way everyone can sign up for these communications at the FDA website: Azithromycin (Zithromax or Zmax): Drug Safety Communication - Risk of Potentially Fatal Heart Rhythms AUDIENCE: Family Practice, Patient, Pharmacy, Health Professional ISSUE: FDA is warning the public that azithromycin (Zithromax or Zmax) can cause abnormal changes in the electrical activity of the heart that may lead to a potentially fatal irregular heart rhythm. Patients at particular risk for developing this condition include those with known risk factors such as existing QT interval prolongation, low blood levels of potassium or magnesium, a slower than normal heart rate, or use of certain drugs used to treat abnormal heart rhythms, or arrhythmias. FDA has issued a Drug Safety Communication today as a result of our review of a study by medical researchers as well as another study by a manufacturer of the drug that assessed the potential for azithromycin to cause abnormal changes in the electrical activity of the heart. FDA previously released a Statement on May 17, 2012, about a study that compared the risks of cardiovascular death in patients treated with the antibacterial drugs azithromycin, amoxicillin, ciprofloxacin (Cipro), and levofloxacin (Levaquin), or no antibacterial drug. The study reported an increase in cardiovascular deaths, and in the risk of death from any cause, in persons treated with a 5-day course of azithromycin (Zithromax) compared to persons treated with amoxicillin, ciprofloxacin, or no drug. The risks of cardiovascular death associated with levofloxacin treatment were similar to those associated with azithromycin treatment. BACKGROUND: Azithromycin is marketed under the brand names Zithromax and Zmax. Change to “FDA-approved indications for azithromycin include: acute bacterial exacerbations of chronic obstructive pulmonary disease, acute bacterial sinusitis, community-acquired pneumonia, pharyngitis/tonsillitis, uncomplicated skin and skin structure infections, urethritis and cervicitis, genital ulcer disease RECOMMENDATION: Health care professionals should consider the risk of torsades de pointes and fatal heart rhythms with azithromycin when considering treatment options for patients who are already at risk for cardiovascular events. FDA notes that the potential risk of QT prolongation with azithromycin should be placed in appropriate context when choosing an antibacterial drug: Alternative drugs in the macrolide class, or non-macrolides such as the fluoroquinolones, also have the potential for QT prolongation or other significant side effects that should be considered when choosing an antibacterial drug. Healthcare professionals and patients are encouraged to report adverse events or side effects related to the use of these products to the FDA's MedWatch Safety Information and Adverse Event Reporting Program: •Complete and submit the report Online: www.fda.gov/MedWatch/report.htm •Download form or call 1-800-332-1088 to request a reporting form, then complete and return to the address on the pre-addressed form, or submit by fax to 1-800-FDA-0178 Read the complete MedWatch Safety Alert, including a link to the Drug Safety Communication, at: http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm343350.htm

I cannot imagine how you could have Ehrlicia without Lyme, but I think you wrote that you never saw any Lyme symptoms so hopefully that will be the case. Did you do an Igenex WB? Were any bands pos or IND? I have not been able to find out much anywhere or from anyone about Ehrlicia or Anaplasmosis. The good thing about knowing is once you know you can address it. Hopefully this will make a difference for you. BTW it says don't take Doxy at meals but most people do because it can upset the stomach. Let us know how things go!

If you are not dealing with Lyme, my thought is you would not see much herx with ehrlicia/anaplas alone. If you are dealing Lyme, doxy may pack a punch. In our case dd would have a good long crying jag, bad joint pain, and general upsetedness (probably not a word) for a couple of days when switching abx. Early on she even had one hallucination. The good news is that those confections as far as I know are well addressed with 30 days if foxy, unlike the others which take much longer. I believe doxy also has some anti parasitic effect so you may see some herx from babs too if you may be dealing with that. Our first try with doxy brought dd to a much better place very quickly, good luck

Biaxin was a huge help for dd initially, it also has some anti inflammatory properties. We used in combo with augmentin

There seem to be 5 or so different types, does anyone know which is best? Hydrate, tautrate, malate etc I'm confused

Just got another emails from the FDA on a further link between Zithromax and heart problems. Dd is on rifampin/zith combo, am wondering what other rifampin combos people are using outside of zith? We checked biaxin and there seems to be a bad interaction between rifampin and biaxin. Dd will not take doxy

I understand that Dr. Reddy's has hade some manufacturing problems, I just ask CVS to order other brands and they will. I go to CVS because they can add extra flavor and my local phramacist doesn;t have the flavors: http://www.fiercepharma.com/story/dr-reddys-discloses-it-recalled-some-generic-seroquel/2012-11-30. Just my opinion that its easier for the FDA to inspect/regulate plants in the U.S., imagine what kind of logistics it takes to inspect an plant in India. Plus you have to think of their suppliers, who the use and where the ingredients come from. and then there is transport, how is the stuff transported and what types of temperature fluctuations are they subject to? stndards just vary too much globally for me to get comfortable with it.

I have two kids on long term Zith suspension right now. When they first started I requested Teva. On three ocassions when I tried to give it to my 3 YO she projectile vomited as soon as I gave it to her. I tasted it and it was absolutely vile. The Greenstone has less bits in it as is much less bitter. When I googled it I see that they were acquired by Pfizer (I think or another major co) which gave me a pretty good comfort level. I will not use Dr. Reddy though which is manufactured abroad. Curious to hear what others say. I didn't know Sandoz made Zith. We use Cefdinir too and for that its Sandoz.

Just to add in regards to Bartonella, rage is a common symptom though sometimes it is very hard to test for. as Tpotter wrote Other symptoms include stretch marks (although for my DD these did not show up until we started treatment), foot sole pain especially upon waking, and bone pain. Sorry if I posted this before but have you tried Burbur? from Nutramedix?5 drops in water up to 4 times per day is what we are doing and it works really well. My daughter tested negative for Bart through several tests with Igenex and Quest, but we started treatment anyway based on symptoms, using Rifampin and Zithromax. When I saw the stretch marks come out four days after starting I was so grateful that we made this decision and did not just go by the blood work alone. She definitely had a bit of a herx when we started this combo but it wasn't too bad. Rifampin combos are good for lots of stuff including strep, you have to do liver tests and CBC frequently when on it. A too high dose of MTHF was contributing to rages in my DD. When I significantly reduced the dose and frequency they went away. I hear you in regards to the other kids, I have a 3 YO, its scary. do you have an MD working with you and what state are you in?

hmmm. DD never swabbed positive for strep, even being exposed to scarlet fever, prior to 2010 when our Lyme issue started. I thought she was somehow resistant. Then she seemed to get it a lot and has had mildly elevated ASO since we started testing it in March 2012. DD only has antibodies per the titers to 3 of 14 strains. I think I will bring this article to our next Dr. B appt and ask, that is a good Dr. B question. As an aside, I got my most unfavorite type of email today, Strep in DD's class

I don't know if I am crazy or if I am right, DD has much much improved and I am hoping to take her off abx in a couple of months. I am considering a six week IV to blast out any of those little buggers that are left. This is sort of the opposite of what people do, usually doing it when a kid not improving. DD has some lingering symptoms that I think are Bart - foot sole pain, a couple of stretch marks but faded, legs go completely numb when sitting on them (nerve damage), and still some visual disturbances. From what I have heard anecdotally, almost every person treated for Lyme by an IDSA doc gets IV antibiotics. I just read how a baby born with HIV was cured by a treatment dose IV infusion right after being born. So I think there is a lot of merit to consdier IV. The risk that concerns me is infection...