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QM I will PM you with our LLMD experiences. Dr. B. knows a bit about Lyme and is open to learning ( I even saw a picture the Children's Lyme Network posted that he attended a Lyme fundraising dinner so that's much appreciated) , and will run the proper tests so he is a good person to work with in that regard.

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Hi There,

 

We're in Maryland and see a LLNP whom we like very much. Our dd is improving steadily under her care. She has a monthly clinic with Dr. J and has been mentored by him for three years. I checked out this mycoplasma post because we just got labs back today and dd's IgG was 2364 and IgM was 1301. She is currently being treated for Lyme and strep and now it looks like we will be adding minocycline to the abx cocktail.

PM me if you'd like contact info and details on the LLNP. She is in DC btw, two blocks from the Natl Zoo.

 

Best,

 

Heather

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I think I've seen others mention that Dr. B refers to and works with drs for lyme for his patients that also have lyme. Long term zith has gotten my son's myco levels down. My DH had a short course of doxy from our GP and that only brought it down by half. He has another appt today to try to get at least 3 weeks worth. I think he may have to give up and try to get out to Dr. B with us one of these times. I had a month of biaxin and then another month just finishing and already I'm feeling sick again. I suspect I shall need more!

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T I live in coastal NC and have been informed by ILAD that there are no good LLD near me. All of this started 3-4 years ago when we moved here and I am totally missing Los Angeles right now. Can someone tell me the closest PANS specialist? Or the best? I am leaning toward Dr. Boubollis. He is not the closest to us but I like what I read. Right now, availability will trump all. We just need to get her through the last week of May when school ends and I will take her anywhere for help.

Queenmother,

 

Dr. Maeve O'Connor is suppose to be starting to take PANDAS patients in Charlotte. Lynn Johnson is a patient liaison.

 

Allergy Asthma/Immunology Relief, 8936 Blakeney Professional Dr, Charlotte, NC 28277 (704) 910-1402

Edited by Sheila Rogers
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Hi there,

I am writing about a newly diagnosed case of PANS. I have been reading on these websites obsessively for the last 2 months and the information has been a ray of sunshine in a horrible nightmare. My son (12) was a happy, well adjusted, sweet, easy going boy when I noticed sudden onset of tics, OCD, anxiety, insomnia and "hearing voices". The symptoms began to ramp up until a friend had me read Saving Sammy. I was shocked because this was something nobody had mentioned. I started him on 1000mg augmentin bid and he responded instantly. He was back to his old self in 48 hours.....all symptoms gone. Well I admit that I was pretty proud of myself. My ex husband is a physician and he called in the antibiotic and lo and behold he was cured! Yea right.....the symptoms stayed away for a couple weeks,at most, and then came back with a vengance. Thankfully, in the interim I found Dr. T. He ordered labs and while we waited he put him on 250 azith with 1,000 augmentin. Again, 48 hours later we were back to normal.....short lived again. The labs came back showing Mycoplasma rather than strep and my 17 year old daughter seems to be a trigger. We are now treating her with azith and my son is on 250 azith twice a day. Today and yesterday were very good days. He is not 100 percent but he is doing very well and we are temporarily relieved. I am now afraid to get too comfortable as I have been burned. I am in touch with Dr. T who is incredible and I feel supported by him but this website has saved my sanity. If I can't sleep because I am worried, I come on and read and feel better. The information is just amazing and I know there are so many of us relying on eachother out there. I just wanted to say that I appreciate all the information. In an effort to give back I wanted to share what worked and didn't for us.

My son had a very bad reaction to culturelle. His tics were at their worst when he was taking that. I know people say it is a yeast die off but it was unbearable to him. He doesn't complain of stomach pain so far. I took him off probiotics with bacteria and added yeast based at bedtime in small doses (5 billion for now)sach b. I would consider increasing that but not right now because he is holding steady. We are leaving him on this dose of azith for a while to see how he does and perhaps we will add doxycycline down the road as it seems to be the drug of choice for Mycoplasma PANS. I want to list what is taking because I always thought those were helpful entries. Obviously, each kid is different and so much of this is trial and error but I found the information helpful.

250 azith 2x's a day

2 motrin in the am (for now)

1 folic acid

juice plus in am and pm (red in am and green in pm) this is said to be immuno boosting....who knows.

2 quercetin in the am and 2 in the pm (seems to take the edge off the allergies as a natural antihistamine and is also anti inflammatory)

1 multi vitamin gummy

1 sach b at bedtime

 

We are holding our breath here and hoping that we continue to see good results. I am always interested in feedback and advice and will continue to keep you posted on his progress. Feel free to ask any questions.

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msegal7 I am glad you have been able to get relief for your son. The only thing I would add is in regards to the mycoplasma. You are right that doxy is a treatment of choice. For us though we didn't see much change when we used doxy and our LLMD changed my daughter to minocycline because she said it crosses the blood brain barrier better than doxy and gives a better result with neuro symptoms. We use a combination of minocycline and cefdiner and after getting through the initial herxing we had good results. Just thought I would share our experience. Best of luck to your family.

 

Dedee

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If you are going to haul it up to CT, then I would suggest skipping DR. B and going to Dr. J or Dr. M, both of whom are LLMDs. Dr. J. just treats children.

I say this with the utmost respect and gratitude toward Dr. B. He helped save my dd's life (not to mention my ds's and mine) by putting us on the Lyme path. But after he determined we were possibly dealing with tick borne illnesses, he actually referred us to Dr. J.

 

There is also a nurse practitioner in Washington DC...so a little closer. I can PM you any or all of the contact info for the above.

 

Kara

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Dedee,

So grateful for the input. I wonder if you could tell me your regimen on those particular drugs? Did your child have tics in addition to OCD and anxiety? Have you seen a return to baseline on that particular cocktail? And lastly, how long have you been giving this combo and how long do you expect to continue?

 

I am learning as I go here. Thanks for all your help.

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Okay, the other shoe dropped. Or should I say she took it off and slammed it down. Repeatedly. We are exhausted.

The doxy was doing great until it wasn't. I know from reading posts that it this is not unusual. Is there any particular pattern that seems common? We are supposed to change over to Omnicef now but I am terrified to do this until her AP exam on Monday because what if that brings on another round of herx? Meanwhile, we are just worried about getting her through the exam. That seems to be our life for the most part...doing whatever we can to clear the next hurdle. And each time gets harder. Thank God, school is over out in less than 3 weeks here (private school).

Since she is resistant to amoxicillin, our local says it is time to try Omnicef. Any of you have any experience with this one? And do hormones aggravate it? because I think that is part of it, too. At least the timing seems suspect.

I'm sad. I'm exhausted. I'm emotional. And I keep reminding myself that it isn't about ME....but I'm the one she depends on and I have been having a bit of a royal pity party tonight. How do you moms do it for all these years and some of you with more than one?

QueenMother

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Oh, I forgot to ask if anyone on this forum has tried colostrum or Cumanda or coconut oil? I have been researching and am curious as to whether any of these are as good as they sound. CDC-Atlanta says that coconut oil is more effective (98%) than anything else on the market.

Thank you all!

QueenMother

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QM - We used bovine colostrum with my second son when treating myco p. It was to help his immune system as he had CVID. I guess it helped as he seemed to clear myco p much quicker than my daughter did. He was never as symptomatic as she was to start with though.

 

msegal7- My daughter did the minocycline/cefdiner combo for six months and did well with it. After 6 months she hit a lull. The LLMD said it isn't unusual for many antibiotics to stop working after that amount of time and so she switched her over to septra/amoxicillin. When we made the switch all h*** broke loose. We initially thought it was a major herx and we decreased her dose but after a few months we realized she just can't take septra and we stopped it all together. Once things calmed back down we started her on Zith / Rifampin. Things are just now starting to settle down again. Her main symptoms are anxiety, raging, defiance, seperation anxiety, tics, & OCD. I am so happy (and a little afraid) to say that I think we are back on track after a little detour with the septra. It's only been 3 weeks so on this combo and it's just been about the last week that things have been showing improvement so we will see how the next week or so goes before any major celebrations. Every child is different and responds differently. I hope your daughter gets a good response with the doxy.

 

Dedee

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Dedee,

We are seeing pretty good results on the azith. He is feeling more like himself and if I look at the big picture rather than day by day, he is making progress. It is the sawtoothed recovery that many speak of and on a daily basis it's hard to really evaluate. Dr. T wants to switch him to Minocycline and I am willing to try it but I am afraid to take him off the azith right now. I think we will hold steady for a minute and see how he responds. It is my understanding that most kids do better on a "cocktail" of antibiotics when fighting myco pans. I haven't yet tried that but am certainly open to it. I think it makes sense to get another doctor on board and am considering calling Dr. B today. Dr. T is amazing but I can't help but think 2 heads are better than one.

 

I hope you continue to see good results with your new combo. It is really a long and winding road to recovery. I feel tired already.

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  • 4 weeks later...

writing with an update and curious if any of you have had this experience. My DS12 has been through several different antibiotics which all seem to work miracles for 2 weeks and then tics, anxiety and ocd return. Dr. T agreed to try Minocycline and it was the best result so far but again backsliding at 2 weeks. I don't think it was a herx 2 weeks in but I could be wrong.....added rifampin 4 days ago and tics are going nuts. The poor kids could barely keep his eyes open last night. It is very hard to watch. I started giving ibuprofin again this am to see if that would settle things down. It's hard to send him off to school like that.

 

I think this crop of symptoms is a herx from the rifampin but I really don't know. The entire thing is such a guessing game. I don't want to stop the rifampin if this is just a herx. He also had fatigue and severe stomach pains including vomiting but that seems to have resolved. Have any of your kids been on this combo and what was the result. I think we are dealing with lyme and myco p along with strep....I haven't been able to sleep and am worried sick all the time that I am headed aimlessly down the wrong road.

 

I increased the probiotics but he reacts to those as well so we have to be careful. Any input would be greatly appreciated. Also, we are working with Dr. T who is compassionate and has frankly saved us in many ways but I feel we need a LLMD on board. I have no idea who to contact. We are in Michigan and I can't find anyone around here. Suggestions very welcome. Thank you all for your help.

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Rifampin is used by many LLMDs to treat bartonella, which we think was the major cause of DD11's PANS symptoms. An increase in herxing with rifampin could indicate bartonella infection.

 

You have not mentioned whether or not your son presents with other symptoms that could indicate bartonella: long bone pain, pick-like headache, night-time fever, stomach pain and IBS type symptoms as well. DD11 was suffering from all of these as well as PANDAS symptoms (see my signature line below). It has taken us 2 years of combination abx treatment to bring her IgG bartonella titers from 120 to 80 (which is still positive). Her symptoms, including motor/vocal ticcing, have resolved at this time.

 

Don't use rifampin on it's own, only in combination with other abx. The chance of developing resistance is greatly increased when it is used as monotherapy.

Edited by rowingmom
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