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Mycoplasma - chronically high IGG


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21 replies to this topic

#1 coco

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Posted 02 May 2012 - 11:48 AM

Levofloxacin for the treatment of Mycoplasma pneumoniae-associated meningoencephalitis in childhood
Susanna Esposito, Claudia Tagliabue, Samantha Bosis, Nicola Principi
Department of Maternal and Pediatric Sciences, Università degli Studi di Milano, Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Via Commenda 9, 20122 Milan, Italy

Received 13 December 2010; accepted 12 January 2011. published online 07 March 2011.

Abstract Full Text PDF References
Abstract 
It has long been postulated that Mycoplasma pneumoniae plays a causative role in the development of neurological syndromes and this has recently been confirmed by highly sensitive and specific molecular diagnostic techniques for identifying infection due to this pathogen. Encephalitis and meningoencephalitis are the most frequent M. pneumoniae-associated neurological manifestations. Macrolides are considered the antibiotics of choice for treatment of paediatric M. pneumoniae infection, but the increase in macrolide minimal inhibitory concentrations of a substantial percentage of M. pneumoniae strains and the poor penetration of macrolides into cerebrospinal fluid suggest that drugs other than macrolides should be evaluated. Here we describe five paediatric cases of M. pneumoniae-associated meningoencephalitis in which 14 days of intravenous (i.v.) administration of levofloxacin (25mg/kg/day in two divided doses) led to the disappearance of neurological signs and symptoms, with a good safety profile. Although further studies are needed to demonstrate whether or not M. pneumoniae-associated meningoencephalitis should always be treated with antimicrobials, what the drug of choice is, how long therapy should be administered and whether supportive therapy is useful, these findings suggest that i.v. levofloxacin should be considered for the treatment of paediatric M. pneumoniae-associated meningoencephalitis.


I have copied this abstract for us in my ongoing quest to figure out chronic high mycop IGG numbers for my dd over the course of more than 2 years. Biaxin and minocycline did not show sustainable gains after multiple high-dose courses over said time. I presented this research to our dr this morning along with a one-pager of bullet-point mycop IGG data month to month to show this titer rising--slightly falling--rising cycle. Asymptomatic other than neurological. He was willing to go with cipro, but my gut tells me levofloxacin may hold the answer. No "years" of pulsed macrolides, gut death, etc. I am going to purchase the complete study which follows the treatment of 5 children and will keep you posted. Sometimes these docs are resistant to try if unfamiliar with treatment protocol, but I will go so far as to contact the authors of this research and set up a call if possible.


#2 tamistwins

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Posted 02 May 2012 - 12:10 PM

Please keep us posted, my son too suffers from mycoplasma.

#3 fightingmom

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Posted 02 May 2012 - 12:15 PM

Great info! Keep us posted, mycoP seems to be plaguing us as well.

#4 trggirl

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Posted 02 May 2012 - 12:55 PM

I really appreciate this. Please keep us posted!

#5 tpotter

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Posted 02 May 2012 - 01:38 PM

Great info! Keep us posted, mycoP seems to be plaguing us as well.



Same here. I had high IgM Mycop, but DS has had high IgG, and then it doubled when I got sick again. It's time to recheck his titers, so I can prove all this. I just truly feel that mycoP is the answer for him.

I seem to have gotten mine under control with acupuncture...I feel amazingly better...almost 100%, but it doesn't seem to be helping him to the same degree as it was helping me, and maybe that's because I had an active infection, and his is just so chronic that we need something far more deeply penetrating.

#6 sf_mom

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Posted 02 May 2012 - 01:46 PM

We also have/had Mycoplasma circulating in our household and use combo'd antibiotics along with herbal remedies to kick the infection. Our children have used Azithro, Noni and A-Myco along with XClear nasal spray. I used Azithro, Doxy, Noni, A-Myco and Beg Spray. You might consider using the herbs on top of antibiotics to see if progress can be made. Noni (15 drops x 2 day) and A-Myco (10 drops x 2 day). The herbs can be extremely strong and a herx response should be anticipated. We typically work up with one drop per day until tolerated. If it becomes too much we maintain current level of drops until symptoms settle.

Her persistent mycoplamsa infection might also mean there is more at play making it difficult for her fully eradicate this particular infection... things that come to mind is the usual list: viruses, KPU, detox/methylation, other chronic infections.

#7 norcalmom

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Posted 02 May 2012 - 03:04 PM

good luck coco - keep us posted. I would go the iv route and by pass the gut too - if I though DS would do it!

#8 yospinner

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Posted 02 May 2012 - 07:28 PM

Thanks for sharing. Please keep us posted. I might buy the article as well.

#9 dedee

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Posted 03 May 2012 - 04:56 AM

Here is a link to another study on Levofloxin for Mycoplasma. My daughter also has treatment resistant Myco p. We did IV antibiotics for a week in the winter but it wasn't Levofloxin. I could probably get my Integrative Medicine practitioner to try this based on the full article but I'm not sure I want to do 2 weeks of home antibiotics during the summer.

Myco P. Article

Edited by Dedee, 03 May 2012 - 04:57 AM.

Mom to three PANS children: Son 18, Son 15, & Daughter 10. Oldest Son off antibiotics and doing well.  Middle Son being treated for Lyme and Myco P with antibiotics and supplements.  Daughter being treated for Lyme, Bartonella, & Anaplasma.  She has had 2 IVIG's, on antibiotics, supplements and working with methylation and CBT.  Starting with my oldest son, we have been fighting this battle for 12 years!


#10 smartyjones

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Posted 03 May 2012 - 05:02 AM

I seem to have gotten mine under control with acupuncture...I feel amazingly better...almost 100%, but it doesn't seem to be helping him to the same degree as it was helping me, and maybe that's because I had an active infection, and his is just so chronic that we need something far more deeply penetrating.



tpotter -- fascinating! you think you've gotten it under control with acupuncture??!! are you also taking meds? mind sharing what type -- weekly, semi-permanent? stunning!

#11 coco

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Posted 03 May 2012 - 09:17 AM

Here is the full article I purchased for all who are interested.
I have not digested it yet but welcome your thoughts!

http://ac.els-cdn.co...539398e6f64d102

#12 tpotter

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Posted 04 May 2012 - 03:04 AM


I seem to have gotten mine under control with acupuncture...I feel amazingly better...almost 100%, but it doesn't seem to be helping him to the same degree as it was helping me, and maybe that's because I had an active infection, and his is just so chronic that we need something far more deeply penetrating.



tpotter -- fascinating! you think you've gotten it under control with acupuncture??!! are you also taking meds? mind sharing what type -- weekly, semi-permanent? stunning!



Yes, I have also been taking doxy, rifampin, tindamax, and azith (the LLMD thinks I also have bartonella, because of symptoms, and we know for certain that my son has it (even though his blood tests were negative,) because of the rash. Anyway, I got very sudden relief after the 2nd or 3rd tx of acupuncture. I did here a little (got some air hunger, that I hadn't gotten in 1 1/2 years since starting azith.) Everytime I try to decrease azith, though, I flair, so I don't think it's 100%, but it's pretty close. But, my LLMD did take out the doxy this last time!

Now that allergies have gotten really bad, though, I'm having some trouble, but interestingly, it feels different than the mycoP did. I still have a pain in my right chest, but it's different...really feels more like allergy induced asthma, and I can control it with inhalers, which I couldn't do with the mycoP. I breathe with my mouth closed, deep breaths. No more coughing (I had a pesky cough for 3 years.) At my next Lung visit (with the pulmonologist), I'm going to ask him to see if the lungs actually look any different. He did say the last time he checked that it looked like there was permanent damage, but I really feel that much better.

For the record, my son denies feeling any better since starting acupuncture, but honestly, I don't see him getting as sick any more, and I don't think he has a recollection of just how sick he was. I also think he's been herxing, and I keep telling him that. But, I'm letting him take off a week, and then we'll see. He said he gets a lot of relief from the chiropractor, and we found a good one locally.

Also, keep in mind that DS has done IVIG multiple times in the past (stopped in Dec when the insurance ran out.) That helped amazingly well, too. And the PEX he had 2 years ago, worked even better. But, I actually had the possibility of getting IVIG through my lung specialist at a major local hospital (he said that since Dr. B. had found the same immune deficiency in me as in my kids, he would try to get it covered if I wanted. I had just started acupuncture at that time, and told him so. He never dished it, but said "go for it." I wanted to try it first. Now, I see no reason for IVIG for me (at least at this time, although with this disorder, I will never say never.)

Accupuncture was weekly, but I will repeat if necessary. I found a Chinese guy 7 minutes from my house. 30 years experience. Found him in the yellow pages!

#13 hopeny

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Posted 05 May 2012 - 11:19 AM

Thanks for this study which is very interesting. My DD8 has had sudden onset of severe psychiatric symptoms with leg pain, exhaustion, dizziness, brain fog (suddenly became suicidal), she is + for Lyme, Anaplasmosis, Ehrliciosis, Strep titer elevated at 192 and Myco IGG 5. We are seeing LLMD and and saw Dr. B's PA Jennifer (though he came in to consult during DD's visit - I really like both of them, very thorough) We are trying Dr. B's suggestion of Biaxin/Augmentin for 30 days first which he said will cover Lyme, Myco and Strep. Have already tried amox and short course of Doxy with some relief of symptoms. LLMD prescribed 30 days of Doxy but want to see what Biaxin/Augmentin does first. My question is, what Myco levels do your kids have? Trying to understand where DD is on the range.

#14 coco

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Posted 10 May 2012 - 05:40 PM

We had our appt today with neuro and I presented the abstract and discussed the various options for treating mycop. After presenting daughters IGG/IGM history, he concurred that we were dealing with chronic mycop. Asymptomatic other than neurological/pandas. This can be due to a dysregulated immune system and/or the mycop in an of itself. 10% of all mycop affects the brain. I told him we have been on augmentin, zithro, biaxin, minocin without lasting conditions. He then suggested cipro. I wasnt against cipro, but how about we try exactly what Was done in the study? I am so done with "maybe try this and see first" and think I'd like to follow the EXACT recipe. Doctor was enthusiastic 😊 about this research paper and he went to purchase and download the entire report then and there. I believe he knew one of the doctors and was impressed with the reputation of the group doing this research. As far as I can tell, there is no other research on this. In brief, 5 children with mycop were treated in ER with macrolides. All failed to respond within several days. The prevailing thought seemed to be if you don't see marked improvement in the first several days, you are not going to see more improvement in subsequent days. EEGs showed slow frontal lobe activity among other symptoms. Macrolides were stopped and IV levofloxacin was administered at 25g per kilo for 2 weeks. All symptoms abated and normal EEGs returned. There is no research to determine if levofloxacin can irradicate long term chronic mycop, but there is no reason to believe it can't. Whether or not normal neuro functioning can occur is the million dollar question, especially for those kids who have missed developmental milestones and permanent neurological damage results. I am personally a big believer in neuroplasticity, but that's another thread...hope has brought me this far! In summary, levofloxacin has a good safety record. There was a concern that it caused muscle/tendon lesions and was not recommended for growing children, but that was 15 years ago and is thought to be quite safe today. I would recommend you read the research.

We are running additional labs and the doctor will review the research in detail, but as of today he is on board with giving it a shot.

I am sorry the link I posted does not work. I purchased the article from my iPhone (don't even open the laptop anymore) and only had 24-hour access. It wouldn't allow me to do some functions from the iPhone and I ran out of time to play with it anymore. However, I have the hard copy full article today and my husband has scanned it into his computer, so I will be able to email it to anyone who would like it. Just pm me.

I hope this becomes an answer for so many of us.

#15 harrietdays

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Posted 10 May 2012 - 06:50 PM

Thank you for bringing this study and information to our attention! I am a new member whose child also needs treatment for mycoplasma so this is extremely interesting and timely to me.

I am wondering if local pediatricians would be willing to give this a try for those of us with long distance pandas docs who ordered it.

Have you heard if it can be administered in clinic or only hospital settings?




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