[DS8 Lyme Diagnosis / NYC]

Thanks for your reply!

I'm in Staten Island.

My son was experiencing hip pain back in September. It was first diagnosed as toxic synovitis. When it recurred recently, his ped. tested for Lyme, which came back positive (from Quest). This week, the specialist told us that he was likely infected in early summer. 

I just ordered the Blood Collection Kit from IGeneX to test for co-infections.

I'll PM you for additional info. Thanks again.

 

[DS8 Lyme Diagnosis / NYC]

Hi All,

It's been a few years since I've posted. DS11, who had a mycoplasma infection and many of the issues associated with it, has come out on the other side. He's just started middle school and is doing very well!

Unfortunately, DS8 has just been diagnosed with Lyme. Our pediatrician prescribed 500mg of amoxicillin, 3 times daily. We just visited an infectious diseases pediatrician this afternoon. I presented him with two questions:

• Should we test for co-infections?
• Should we be using an intracellular antibiotic?

I was surprised that he answered "no" to both questions. He simply said the co-infection Babesia would have resulted in a terrible fever and headache and that would have been the end of it. As for an intracellular antibiotic, he looked at me quizzically and said, "Lyme is easy to kill.... You've been reading the wrong stuff."

I may be a bit rusty, but I still believe next steps should involve finding an LLMD and addressing the two above issues.

Any guidance / suggestions will be greatly appreciated.

Thanks!

[PANDAS & Epilepsy]

DS5 has just been diagnosed with Benign Rolandic Epilepsy.

Does anyone have any experience with this?

 

Thanks!

[NAC Strikes Again!]

I recently posted regarding the fact that seven weeks of Zithromax (200 mg per day for MycoP) seemed to have no affect on DS5's chronic sinusitus, tics and OCD. But shortly after that post, the nose cleared, the tics vanished and the OCD (excessive handwashing for fear of breaking toys with dirty hands, etc.) has greatly diminished. A week or so before this, we incorporated two new things into DS's regimen: Cysteplus (NAC -- 1 500 mg capsule per day) and essential oil of oregano (applied to the soles of the feet each night.) This prompts me to wonder if the Cysteplus may have eradicated a biofilm in the sinuses or adenoids (he has huge adenoids -- 80% blockage -- being removed, along with tonsils, next month) which allowed the Zithro to finally do its job. Oregano is also extremely antimicrobial. Anyway, we have decided to discontinue the Zithromax in order to see exactly what kind of role it has been playing and run labs in a week or so. It's tough to stop something during the good times, but we hope this will ultimately help paint a clearer picture of the situation. Thanks for posting this article; it appears at just the right time for us!

[Discontinue Zithro?]

Hi All,

 

Ironically, these past two days DS5's tics have diminished and OCD (handwashing) is at a minimum -- barely noticeable. Given this advance, it would be difficult not to stay the full twelve-week course. The tentative plan is to pause the azithromycin shortly before the t & a, although how much before we are not yet sure.

 

Thank you for all your input! Biaxin is certainly still on the radar.

 

-Phil

[Discontinue Zithro?]

Our latest dilemma:

 

DS5 has been on Zithromax for close to seven weeks now to treat mycoplasma, and we have seen no improvement in tics or OCD behavior. I believe we are dealing with a macrolide-resistant strain and need to go back to the drawing board. But we plan to have a t & a performed soon and are hesitant to take him off the zithro until after surgery. On the other hand, the recent azithromycin study has prompted us to question if the combination of zithro and anaesthesia might be too much of a strain on the heart during surgery. A blood test will be done soon, and the myco-p titers may shed some light on things, but my understanding is that (according to G. Nicolson), the blood will not paint a truly accurate picture until four weeks after discontinuation of all abx. Our goal was to get DS5 strong before surgery, but the Zithro is really doing a number on his gut (despite probiotics), and I wonder if it has ultimately proven counterproductive.

 

Any thoughts would be greatly appreciated!

 

Thanks,

Phil

[Natural Treatment for Strep in the Gut]

Philamom: We used the GI Effects Complete Profile -- Stool, with Metametrix. The fusobacterium and streptomyces came up high, but not high enough to be considered "opportunistic" infections. According to our ped., this is why the strain of strep is not specified. Regardless of strain, I'd like to see the numbers lowered and normal balance in the gut restored.

 

MMC: Regarding your question about strep in the gut, Dr. Yasko makes this observation: "Streptococcal infection in the gut can serve as a reservoir to reinfect the sinuses. Chronic streptococcal infection has been associated with OCD behavior as well as tics, over stimulatory behavior and perseverative speech." (http://www.vsan.org/rok-az/methylation/AutismAnswerUpdatedGutprotocol4.pdf). This doesn't quite answer your question, but is of particular interest to me because DS5 has had chronic sinusitis since December. He's been on zithro for the past month for mycoplasma, but, as with all previous antibiotics, the nose clears for a few days and then returns to its stuffy, runny state. Because previous strep tests came up negative, I believed I was dealing solely with myco, but the results of this stool sample, in conjunction with Yasko's statement, seem in line with DS's situation.

 

BWS: Thanks for the info regarding Raindrop Therapy. There is quite a bit of info out there regarding essential oils, particularly oregano, being very effective in combating strep; however, it seems they are also very powerful and must be used with care. I must look into this further....

 

Thanks everyone!!

[Natural Treatment for Strep in the Gut]

Update: fusobacteria sp. is in the 5th %tile (highest)

streptomyces sp. is 4th %tile.

 

I believe fusobacterium can be pretty dangerous and is treated with penicillin. Contacting our ped. regarding that.

 

Streptomyces doesn't seem to be related to streptococcal, but I haven't yet fully researched this.

 

Does anyone have any experience with this?

 

Thanks!!

[Natural Treatment for Strep in the Gut]

DS5's stool sample reveals strep in the gut (4). I heard this can be treated with essential oils but haven't been able to locate any definitive information. Does anyone have experience with this? Thanks!!

[T & A for DS 5]

My ds 14 had T&A last year and just on a fluke, I asked if nasal swab could be done on his sinuses to see if MaRcons were present. He has never had strep or sinus issues but wanted to check while he was asleep as the procedure is not fun otherwise. It came back positive! Doctor was surprised she got a positive first try, but figured it was due to him being asleep and the ENT going deep. She said it usually takes several swabs to get a positive. We treated the staph with BEG spray for 3 months and am hoping it is gone now.

 

Excellent idea! We've been wanting to do the sinus culture because DS has had chronic sinusitis, but we've been holding off because it's an uncomfortable procedure, and he's been through quite a bit with doctors lately. Thanks for the info!!

[T & A for DS 5]

I believe you can do iv zith, don't think you need to do a test run though. Problem is finding a co-operative ENT. I'm out west, found a great one who obliged with everything I asked. I just asked for iv antibiotics, didn't specify which ones. Asked to culture everything, which he did and TG because cultures were pos for pseudomonas and did 10day dose of cipro for that. Can your pandas Dr recommend a good (co-operative) ENT?

 

Hi Kiera,

 

Thanks for your reply. The ENT our ped. recommended prescribed the antihistamine and corticosteroid which triggered the tics and ultimately alerted us to the bigger underlying issues (a blessing in disguise, I suppose). We haven't contacted her regarding the T & A yet. Whoever we ultimately go with, we'll be sure to confirm they're willing to administer IV abx and cultures!

 

Thanks for the info,

Phil

[T & A for DS 5]

Hi All,

 

We are in the process of planning my DS 5’s T & A and are in need of some advice. He is currently on his third week of Zithromax (for mycoplasm) and we want to do a three-month course before the procedure, which would place it at some point in July. From what I’ve read in these posts, IV antibiotics will be necessary. Can azithromycin be administered intravenously? If not, is it advisable to do a test run of the IV antibiotic before the procedure? If anyone can offer any advice on this, it would be greatly appreciated. Our DS starts kindergarten in September, and we’d like to do everything in our power to give him a strong start.

 

Oh, and if anyone knows of an ENT in the NY metro area who is familiar with the PANS/PANDAS protocol, I’d love to hear from you!

 

Thanks,

Phil

[Mycoplasma Levels Question]

Thank you all very much for your fast and informative responses! It seems most of the literature out there regarding PANS mentions strep, but not mycoplasma. Because my DS tested negative for strep numerous times, and does not exactly fit the standard criteria for PANS, I thought he was in the clear. But now the pieces are beginning to come together. Luckily my ped. is aware of this condition, and although I'm upset that he didn't call me immediately with the myco test results (I had to call this morning), I think he'll be on board regarding a long term abx treatment -- at least until we find an authority to help guide us through the process. I wish you all the best of luck on your journeys. I'll be back with more questions!

[Mycoplasma Levels Question]

Hi Phil!!!! My dd 6 now 7, was blood tested for same stuff. We already knew about milk allergies from family history. But our issues with tics from strep came up in Dec '10. Then at our request in spring of '11 had complete blood test for allergies and our request included Mycoplasma. Had the script but did not do anything with it till Aug of 2011 when tics came back. We were not told of the results. November of 2011 she started with severe ticcing and chorea like movements and we were fighting with Ped on getting our other dd 8 on an abx post strep infection that was pretty bad too.

 

So, needless to say, dd7's myco IgM was 5.9 H (high)with postive being >1.1 When I found this out I was very upset and still am. We did some more Azith for 5 more days and retested in November. IgM was 3.5. This entire time, she was asymptomatic for breathing or sinus issues other than normal itchy noses---thus the tics. We have since gone to a DAN/Integrative Ped. She was on two courses of 10 days Azith then a prophylaxis of M, W and Friday since about Jan. We have seen great improvement with abx and a whole host of other supplements for rebuilding the immune system. I have heard about myco being suspected in asthma, so it is definitely worth looking into.

 

Here is an interesting article about Mycoplasma and some other links if you have not found them already. Good luck!!!!

 

http://www.rain-tree.com/myco.htm -------------this is a good article.

 

http://old.post-gazette.com/healthscience/20030610hasthma2.asp

 

http://ajrccm.atsjournals.org/content/158/3/998.long

 

http://ajrccm.atsjournals.org/content/172/9/1078.long

[Mycoplasma Levels Question]

Hi All,

 

My DS4 developed motor tics after being on antihistamines and corticosteroids for a month due to chronic congestion that persists regardless of what antibiotic he's on. Tests showed allergies/sensitivities to egg, gluten, dairy, which have been discontinued for weeks, but congestion and tics continue. A blood test has revealed Mycoplasma IGG: 1.08 and IGM: 521. As I research, I'm starting to suspect that mycoplasma may be playing a larger part here than physicians thought (we've been told repeatedly that a stubborn infection might be living in my son's enlarged adenoids). Can anyone shed some light on these numbers for me?

 

Thanks in advance,

Phil

[Neurology Tests for Tics]

This is very helpful. Thank you, everyone!

[Neurology Tests for Tics]

Hello,

 

Can anyone tell me what kinds of tests a neurologist might run on 4.5 year old who has recently developed tics?

 

Thanks!

[Can Antihistamines Cause Tics?]

Thanks for your reply, Chemar.

 

Further searches through these posts have revealed Nasonex as another culprit for tics. So we discontinued that as well as the Claritin and the tic has subsided considerably. But now the heavy nasal congestion/runny nose is back. We are awaiting allergy test results, and I hope they reveal something (I have a feeling it is mold or dust). Our doctor also wants to do a toxicity test. I hope we can get to the bottom of this.

 

Thanks again,

Phil

[Can Antihistamines Cause Tics?]

Hello All,

 

My apologies if this topic has been addressed before. I have been digging through the posts and haven't yet found anything.

 

My 4-year-old son has no history of tics. He had chronic congestion for months which did not clear up despite numerous rounds of antibiotics. A pediatric ENT prescribed Zyrtec and Nasonex. After two weeks we switched the Zyrtec with Claritin because we were concerned about the presence of parabins in Zyrtec. After about one month, as we neared the end of the prescription, we saw some improvement in his congestion. Then last Friday afternoon, a few hours after taking Claritin, my son began to exhibit a motor tic in which he grimaced, his shoulder shrugged, and his head tilted down toward the shoulder. We discontinued the Claritin and for the last few days the tic has changed to a mouth grimace, which seems less severe, but persists nonetheless.

 

He has tested negative for strep numerous times, and has not demonstrated any other symptoms of PANS or PANDAS. I know there are many factors that can potentially be involved here, but there are two reasons I keep returning to the Claritin: 1) I have read numerous posts here about antihistamines aggravating tics, and 2) my son's tic seemed to subside considerably after discontinuing the Claritin.

 

These last few days have been difficult and frustrating, to say the least. Our pediatrician has been less than helpful (his answer to everything seems to be a stronger round of antibiotics), and as you know, searching the internet often feels like groping around in the dark. After reading many of your posts, I can see that you've "been there, done that," and I strongly feel that the next piece to this puzzle lies here...somewhere. Any insight you may be able to provide would be greatly appreciated. Thanks for taking the time to read this. I hope to hear back from you soon.

 

Sincerely,

Phil