Anaplasma Infection Anyone?

[lmi1973]

Hi, ds Kyle (10), was diagnosed this past January (2011) with pandas. Kyle had hd ivig on 2/24 & 2/25 with Dr. K in Chicago. Since then, we have worked with Dr. Trifiletti as Kyle hasn't made much progress post IVIG and wanted to rule out other infections.

 

Dr. T found that Kyle had a mycoplasma infection and has been treating him with clymdamycin for past couple of weeks. The last bloodwork came back this week and it showed that Kyle also tested positive for anaplasma?! Dr. T said that this is not a common infection for pandas kids. He also said that we should see a lyme doctor as anaplasma is another tick-borne illnes. Dr. T still feels Kyle has pandas (actually PITAND) and is treating as such, but wants us to see LLMD since he is unfamiliar with protocol on anaplasma treatment.

 

Has anyone had this type of infection?

Dr. T did not switch clymdamycin to doxycycline as he was worried about teeth staining, but am wondering if he should be switched after what I've read. Kyle is 10.5 years old and weighs 85 lbs.

 

Thanks so much for any insight/help,

Sincerely,

Laura

[lyme_mom]

My llmd gave my ten year old doxy. He said the teeth staining reall applies to tetracycline. I think every pandas pitand child should see a llmd first because SO many have latent infections that the pandas doctors are not trained in picking up on. Blood tests for Lyme and coinfections often are negative even when there is an infection so bartonella or Lyme could also be involved. It's the symptoms that matter most and bartonella can look like pandas. A good llmd will make a huge difference.

[ptcgirl]

My llmd gave my ten year old doxy. He said the teeth staining reall applies to tetracycline. I think every pandas pitand child should see a llmd first because SO many have latent infections that the pandas doctors are not trained in picking up on. Blood tests for Lyme and coinfections often are negative even when there is an infection so bartonella or Lyme could also be involved. It's the symptoms that matter most and bartonella can look like pandas. A good llmd will make a huge difference.

 

My dd11 was diagnosed with pandas in 2006 and now Lyme, Bartenella, and babesia in 2011. We are seeing dr b and dr j in ct and I do believe it is worthwhile. I just wonder which one came first, pandas or Lyme, etc? Does she really have Pandas or was it the Lyme stuff all along? The drs all think she has both but there is that question in the back of my mind..... It makes me wonder how many of the kids from this forum are diagnosed with both. There sure seems to be a lot of us! What is the connection? I've heard that dr j and cunning ham have spoken about this too. Very odd.

[butterflymom]

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Edited October 5, 2015 by tampicc

[lmi1973]

I know, it does seems as though there are as many, if not more, kids that have other infections besides strep, especially a lot of tick borne ones. It would make sense to throw on some extra blood tests to the standard ones they run to just rule them out first. thanks so much for all the information. I was able to call LLMD yesterday and get appt., but not until June 20th. I'm going to call and ask to please get us in sooner if there is a cancellation. I actually took Kyle to er this morning b.c. he was acting so goofy I was convinced he was hypoglycemic; they did a quick blood test and said his sugar level was not low, but, they did switch him from clyndamycin to doxycycline. Praying something starts to help him soon. How long does it take to see improvement after starting the correct lyme treatment? I only got a ten day Rx for doxycycline, thinking I'm going to have to try to get longer. I also need to get Igenex tests run. Sometimes (a lot of times) this is so overwhelming...

[kmom]

We saw Dr. Trifiletti last year for PANDAS. Glad he advised to find an LLMD b/c he's not Lyme savvy at all. We were stuck on PANDAS for a bit when Lyme was affecting both of my kids and myself actually. We too saw Dr. B in CT. Kids had 1 HD IVIg and then I really pushed the Lyme research and realized their labs weren't so negative like PANDAS dr's thought. We got an appt w/ Dr. J but had to wait 4 months so we got in w/ another great LLMD and got treatment b/f seeing Dr. J. He's great. He's in MD. Not sure where you are but he's worth the trip. Sounds like you are on the right track but you need to continue meds even after the 10 days of doxy from the ER. He's also good at helping boost the immune system and detoxing the toxins produced from bacteria die off. If you have any question, PM me!

[lmi1973]

I PM'd you kmom, thx:)