Jump to content
ACN Latitudes Forums

Mycoplasma pneumoniae causing PANDAS-PITANDS in late teen


Recommended Posts

I am desperately looking for any information on other cases in which the underlying cause for the PANDAS symptoms are Mycoplasma pneumoniae and not Strep.

 

Our Sandra is clearly such a case (5 years). Since the onset in 2005 her MP IgG are positive, elevated up to 6 times compared to the base value, and fluctuate, and so are her leucosyte values.

 

I told about her case on http://www.latitudes.org/forums/index.php?...d&pid=41310

 

After getting hold of the Saving Sammy book and getting doctors to read it, we are finally getting somewhere with doctors accepting the idea of trying long term suitable antibiotics and/or other treatments, starting with the less invasive and harmful ones.

 

I am now looking for information on similar cases treated, by whom and with what degree of success.

 

If any of the doctors who treated such patients is reading this message. Would love to have you assist the Finnish doctors on the case. Please get in touch (batsheva.myllys(at)gmail.com).

 

I believe that Sandra can be saved and still have a normal future. She will be 20 next month, a quarter of which has been made real ###### by PANDAS-PITANDS.

 

Bat-Sheva Myllys

Finland

Link to comment
Share on other sites

  • Replies 30
  • Created
  • Last Reply

Top Posters In This Topic

Bat-sheva-

 

I would consider contacting Dr Rosario Trifiletti in NJ. He has long term experience in pandas, and very much understands the science of it all. I believe he would be very responsive to speaking with docs in Finland, as he as worked with doctors in Italy before. I would also consider emailing Dr Susan Swedo at the National Institute of Health- she "discovered" pandas, and may have some experience with this.

 

Best of luck to you...

Link to comment
Share on other sites

Thanks for the good ideas.

Prof Trifiletti is certainly "on my To Contact list". Regarding Susan Swedo, I had very disappointing experience when the story started and my friend, the Israeli immuno-neurologist finally got he diagnosis right. When the condition returned the next year I went on a round of whomever I manage to locate, who published on the subject. Prof Trifiletti's co-author from Italy, Pavone was most kind and supportive, but the team of Susan Swedo gave me a very cold shoulder. She did not reply herself but some social worker from her team told me they were simply not interested in the case because Sandra was 15 and did not have Strep. I read everything she published and she did at the time included PITANDS in the research subject. When I wrote they were not interested at all in anything but Strep and small kids. In fact, it seemed they were only interested in their own research work, not in suffering patients. If I am not mistaken, Beth, Sammy´s mother had rather similar experience with the Swedo team.

Dr K was most willing to help but considered her high age and duration of symptoms a problem. He was of the opinion she might not benefit from IVIG. In fact she did benefit, until there was a mess with payment obligation between 2 hospitals (the Finnish system is very different from the US one) and one the maintenance treatments got delayed by months, a respiratory infection re-triggered the condition and the treating doctor got tired. I tried to get him information on cases and contact details of experienced professionals (no one in Finland seems to know anything about this condition or dare treating it but for our former school GP, who acted upon the instructions of my friend, who had the experience of a single case. We did consult some leading immunoneurology figures, whose opinion was that she would need rather aggressive treatments and we had no one here to get in touch with them and really figure out what was the basis for these ideas in terms of experience and results. Our doctor at the time, the leading neurologist of Metropolitan Helsinki would not bother to get in touch with them although they indicated they would rather give him the necessary information and could not understand why the mother was contacting them alone.

No one ever brought up the idea of long term antibiotics before I read about the Sammy case and I would very much like to explore this lane as well as other non-invasive and less aggressive paths before we even reconsider plasma pheresis, Rituximab or the like.

 

Beth sent me the most updated list of Pro-PANDAS medical professional she has compiled but most of the names do not have an e-mail address to match and I find it real hard lo locate up-to-date ones.

 

Hope to get responses from both patients-parents and doctors on the discussion board...

 

Bat-Sheva

 

 

Bat-sheva-

 

I would consider contacting Dr Rosario Trifiletti in NJ. He has long term experience in pandas, and very much understands the science of it all. I believe he would be very responsive to speaking with docs in Finland, as he as worked with doctors in Italy before. I would also consider emailing Dr Susan Swedo at the National Institute of Health- she "discovered" pandas, and may have some experience with this.

 

Best of luck to you...

Link to comment
Share on other sites

Do you need Dr Trifiletti's info?

 

I wouldn't let her age deter you at all. There was an Isreali study (someone here can post a link) that followed four men that improved with ivig. If you could get daily zithromax (azithromyacin), I would do a long term (a few months minimum) trial of that. Along with that, could you get a steroid (prednisone) burst- which would be like 2 weeks of a treatment dose of steroid, with two weeks of tapering down. This would be a start. My daughter had plasma pheresis, and I can tell you, if you are at a top notch hospital, it is not a huge ordeal and the risks are low.

 

Dr Elizabeth Latimer, a well respected US pediatric neurologist from the DC area, is speaking at the Autism conference in Chicago in April or May- possibly you can get a transcript of her speech.

 

Dr Trifiletti did a post on here recently about pandas info, that he wants to include in an upcoming paper. It speaks about treatment. Maybe if you could get that paper to his associate Pavone and beg for some help in Finland....

 

I am so sorry for your struggle.

Link to comment
Share on other sites

I saw your name pop up for the Saving Sammy fan pages for a request of people contacting you w/ similar histories. There is a list of docs of this forum and it does vary from Beth's list. It can be found at...

 

http://www.latitudes.org/forums/index.php?showtopic=6428

 

But I do agree that keeping with the experts in this field ( like Dr T) would probably prove to be the most beneficial.

 

Is there anything we can do on this ned to help you track down contact info for any of the docs listed on Beth's site?

Link to comment
Share on other sites

I would definitely give the higher dose antibiotic a try. Our son has responded really well after to two treatments of IVIG and higher dose antibiotics.

 

Thanks for the good ideas.

Prof Trifiletti is certainly "on my To Contact list". Regarding Susan Swedo, I had very disappointing experience when the story started and my friend, the Israeli immuno-neurologist finally got he diagnosis right. When the condition returned the next year I went on a round of whomever I manage to locate, who published on the subject. Prof Trifiletti's co-author from Italy, Pavone was most kind and supportive, but the team of Susan Swedo gave me a very cold shoulder. She did not reply herself but some social worker from her team told me they were simply not interested in the case because Sandra was 15 and did not have Strep. I read everything she published and she did at the time included PITANDS in the research subject. When I wrote they were not interested at all in anything but Strep and small kids. In fact, it seemed they were only interested in their own research work, not in suffering patients. If I am not mistaken, Beth, Sammy´s mother had rather similar experience with the Swedo team.

Dr K was most willing to help but considered her high age and duration of symptoms a problem. He was of the opinion she might not benefit from IVIG. In fact she did benefit, until there was a mess with payment obligation between 2 hospitals (the Finnish system is very different from the US one) and one the maintenance treatments got delayed by months, a respiratory infection re-triggered the condition and the treating doctor got tired. I tried to get him information on cases and contact details of experienced professionals (no one in Finland seems to know anything about this condition or dare treating it but for our former school GP, who acted upon the instructions of my friend, who had the experience of a single case. We did consult some leading immunoneurology figures, whose opinion was that she would need rather aggressive treatments and we had no one here to get in touch with them and really figure out what was the basis for these ideas in terms of experience and results. Our doctor at the time, the leading neurologist of Metropolitan Helsinki would not bother to get in touch with them although they indicated they would rather give him the necessary information and could not understand why the mother was contacting them alone.

No one ever brought up the idea of long term antibiotics before I read about the Sammy case and I would very much like to explore this lane as well as other non-invasive and less aggressive paths before we even reconsider plasma pheresis, Rituximab or the like.

 

Beth sent me the most updated list of Pro-PANDAS medical professional she has compiled but most of the names do not have an e-mail address to match and I find it real hard lo locate up-to-date ones.

 

Hope to get responses from both patients-parents and doctors on the discussion board...

 

Bat-Sheva

 

 

Bat-sheva-

 

I would consider contacting Dr Rosario Trifiletti in NJ. He has long term experience in pandas, and very much understands the science of it all. I believe he would be very responsive to speaking with docs in Finland, as he as worked with doctors in Italy before. I would also consider emailing Dr Susan Swedo at the National Institute of Health- she "discovered" pandas, and may have some experience with this.

 

Best of luck to you...

Link to comment
Share on other sites

Thank you in advance!

I need e-mail addresses for those doctors. Preferably for both lists. I think that as Mycoplasma P as a cause is a far more rare one compared to Strep, I should most probably run a mail shot to all, with the hope that they have something to tell us about using antibiotics for this purpose.

 

I will also need any connection taht can be activated, that is, if sb on this forum is on such terms with an experienced doctor that one could bring this information to his or her attention and even get them to write to me and tell what they think they could do to help the doctors here get this done successfully.

 

Also, if anybody knows any other forum that may be of use for the same cal for information.

 

Now that I got the MP antibody statistics (high and strongly fluctuating) I have a GP ready to write prescriptions and do follow up tests but he would need a great deal of support. He, as well as my friend and our former school GP, are convinced my way of thinking is right and tha pasth ahs to be checked, instead of leaving her to deteriorate or stuff her with psychiatric medications (we tried and it simple brought her to the brink of psychosis, which vanished once we weaned her off them). The Turkish psychiatrists as well as Muller (a psychiatrist) used plasmapheresis, not antibiotics. Sandra may well be the first PM induced PANDAS-PITANDS that will try long term antibiotics and possibly steroid pulse therapy before going into other methods, or maybe we get it fixed this way... if it works for Strep, why not for MP? (in 2005 she got a normal 1-2 weeks MP antibiotics which fixed most of the problem and a little later a 1 week Prednison which fixed the rest. for one year! until it all came back, always following some respiratory or ear infection).

 

Regarding plasmapheresis, I will not be able to get a doctor to do it without the background information.

The cases mentioned were in Turkey, not Israel and I am also familiar with the work of Prof Muller from Germany, who cared to send me his articles after I called, but if I cannot get my doctors ehre to contact those doctors who have actual experience, there is no way we will get anything done.

 

I decided long ago I was not going to take any doctors at face value and plunged into studying the subject. The problem is that I am not an acting MD (I do work in the field so I can read rather heavy material) and even if I were, I am her mother... and far too many doctors here have this idea that only doctors can understand and that they know all (medical research shows this being exactly the leading reason for mistakes in diagnosis and treatment...) and refuse to think outside the box.

I believe that if I were to bring them the contact details and the cconsent to cooperate by the experienced doctor, I may be able to Save Sandra. I have done it twice along the way and I have no intentions of letting her young life go down the drain, and my own, and that of the rest of the family with it.

 

Bat-Sheva

 

 

 

 

I saw your name pop up for the Saving Sammy fan pages for a request of people contacting you w/ similar histories. There is a list of docs of this forum and it does vary from Beth's list. It can be found at...

 

http://www.latitudes.org/forums/index.php?showtopic=6428

 

But I do agree that keeping with the experts in this field ( like Dr T) would probably prove to be the most beneficial.

 

Is there anything we can do on this ned to help you track down contact info for any of the docs listed on Beth's site?

Link to comment
Share on other sites

I sort of answered your msg in my reply to Vickie.

Thanks!

 

Bat-Sheva

 

 

Do you need Dr Trifiletti's info?

 

I wouldn't let her age deter you at all. There was an Isreali study (someone here can post a link) that followed four men that improved with ivig. If you could get daily zithromax (azithromyacin), I would do a long term (a few months minimum) trial of that. Along with that, could you get a steroid (prednisone) burst- which would be like 2 weeks of a treatment dose of steroid, with two weeks of tapering down. This would be a start. My daughter had plasma pheresis, and I can tell you, if you are at a top notch hospital, it is not a huge ordeal and the risks are low.

 

Dr Elizabeth Latimer, a well respected US pediatric neurologist from the DC area, is speaking at the Autism conference in Chicago in April or May- possibly you can get a transcript of her speech.

 

Dr Trifiletti did a post on here recently about pandas info, that he wants to include in an upcoming paper. It speaks about treatment. Maybe if you could get that paper to his associate Pavone and beg for some help in Finland....

 

I am so sorry for your struggle.

Link to comment
Share on other sites

Bat-Sheva,

I read your intro post and just wondering, what exactly is the MP? did you just know she had that from the immuno work up, or is that an ilness that showed itself with symptoms? she got that after the influenza A,? or did those levels just show in blood tests after the flu? is this an uncommon illness?

 

Also, may I ask, did your daughter have any of these problems as a child, any tics at all, however mild? did all this come out of the blue, never had any issues before this?

 

Faith

Link to comment
Share on other sites

Bat-Sheva,

 

If you haven't read it, Norbert Müllera (nmueller@psy.med.uni-muenchen.de) in München, Germany has some decent research on Mycoplasma pneumoniae and exacerbations in tic/ocd disorders (see http://www.psy-journal.com/article/S0165-1...0208-2/abstract ).

 

I'm also wondering if the reaction you are seeing is the breach of the blood brain barrier due to inflammatory cytokines and anti-neuronal antibodies crossing the BBB due to the Mycroplasma infection.

 

It also appears that a variant of a GlcNAC targeted epitype occurs in the Anti-I(Ma) antibody (see http://iai.asm.org/cgi/reprint/60/10/4015.pdf). Perhaps this antibody also targets the Tubulin dimmer or the dopamine 2 receptor when there is a BBB breach.

 

Seems sending Kirvan's 2006 paper to Norbert Müller and seeing if he's checked for the same antibodies in serum of patients with Mycoplasma Pneumoniae would make a lot of sense.

 

Wishing you the best,

 

Buster

 

 

 

I am desperately looking for any information on other cases in which the underlying cause for the PANDAS symptoms are Mycoplasma pneumoniae and not Strep.

 

Our Sandra is clearly such a case (5 years). Since the onset in 2005 her MP IgG are positive, elevated up to 6 times compared to the base value, and fluctuate, and so are her leucosyte values.

 

I told about her case on http://www.latitudes.org/forums/index.php?...d&pid=41310

 

After getting hold of the Saving Sammy book and getting doctors to read it, we are finally getting somewhere with doctors accepting the idea of trying long term suitable antibiotics and/or other treatments, starting with the less invasive and harmful ones.

 

I am now looking for information on similar cases treated, by whom and with what degree of success.

 

If any of the doctors who treated such patients is reading this message. Would love to have you assist the Finnish doctors on the case. Please get in touch (batsheva.myllys(at)gmail.com).

 

I believe that Sandra can be saved and still have a normal future. She will be 20 next month, a quarter of which has been made real ###### by PANDAS-PITANDS.

 

Bat-Sheva Myllys

Finland

Link to comment
Share on other sites

We had a seasonal Influenza A and B wave in the spring of 2005 and both girls, then 15 and 17 were clearly ill.

When the influenza was gone and Sharon went back to normal life, Sandra was weak and badly coughing dry caught. The then school GM and my close friend, Marjaana saw her several times and recommended bed rest. Even when she did return to school the cough persisted. Then after a few more weeks the whole "show" started. Never had anything of the kind or anything special but for persistent ear infections at 1 year. It came very suddenly and no, no history what so ever.

Marjaana tested her very thoroughly and we checked the social aspects and psychological ones. The girl was absolutely OK.

The neurologists who saw her decided this was a late age abrupt Tourette's, no treatment, tests by neuropsychologist and psychiatry were scheduled in 6 months and in fact never took place because by the (very late) time they invited us, she was totally well (see later stage) which Marjaana and I could not take less seriously. I took her to a leading pediatric neurology who told me she had abrupt Aspberger (at 15.5 years old!!!) so I thanked her too and called my old friend in Israel, a leading immuno-neurologist and asked him to do some thinking and not offer me what he specialized in and then took her over to see him (he has met her many a time both in Israel and Finland and on line as we keep in touch regularly). He did a good deal of thinking and then told me about his experience with PANDAS and asked me all about Strep and what not and then instructed Marjaana in Finland what tests to run, and she did. Sandra tested positive for Influenza A and Mycoplasma Pneomonia. The next step was to treat it and she got appropriate antibiotics for ca a week, which got most of the symptoms, including the cough vanish and a few weeks later she got 60 mg Prednisone for a week, after which she was perfectly her normal active self for a whole year, until it all came back following an upper respiratory tract infection. My initial message from October details some more of the Saga.

Hopes this answers in full - Absolutely abrupt, no earlier signs what so ever, actual pneumonia and positive blood work, which ahs remained high ever since but also fluctuates greatly within the high end of the IgG scale (50-200% changes).

 

Bat-Sheva

 

 

 

 

 

Bat-Sheva,

I read your intro post and just wondering, what exactly is the MP? did you just know she had that from the immuno work up, or is that an ilness that showed itself with symptoms? she got that after the influenza A,? or did those levels just show in blood tests after the flu? is this an uncommon illness?

 

Also, may I ask, did your daughter have any of these problems as a child, any tics at all, however mild? did all this come out of the blue, never had any issues before this?

 

Faith

Link to comment
Share on other sites

Bat-Sheva,

 

I started going through the doc list on this forum and I am about half way through. I've found some emails. Those who don't have email, do often have fax. That would also be a good way to get in contact with them. Like email, you can collect your thoughts and get all the info out without being interupted or forgetting anything, like what happens in an intial phone call. Hopefully, I will pm you the contacts tonight.

Link to comment
Share on other sites

I hope you got my PM some while ago ?

 

I am so very, very sorry that you are having such a hard time to get help for your daughter !

 

Searching for something else (PANDASrelated), I found this abstract from an article, that might be of some benefit to you ? :

 

"Immediate Relief of Mycoplasma pneumoniae Encephalitis Symptoms After Intravenous Immunoglobulin" (http://www.pedneur.com/article/S0887-8994(09)00317-8/abstract)

 

Abstract :

"Mycoplasma pneumoniae may cause acute encephalitis, resulting in severe neurologic complications despite antibiotic therapy. We report the case of a 12-year-old patient who presented with acute onset of orofacial tics, motor restlessness, compulsive behavior, and cerebellar symptoms. Cerebrospinal fluid examination demonstrated lymphocytic meningitis. Polymerase chain reaction for M. pneumoniae was strongly positive in the cerebrospinal fluid. Blood and cerebrospinal fluid were negative for M. pneumoniae antibodies (immunoglobulin M and immunoglobulin G). The child was administered intravenous γ-globulin, which led to a dramatic improvement of her clinical condition and disappearance of the symptoms within 72 hours. This novel case points to the potential value of γ-globulin in M. pneumoniae encephalitis confirmed with polymerase chain reaction and suggests that immediate administration of intravenous γ-globulin in suspected mycoplasma encephalitis should be investigated in a larger patient cohort."

 

Communications should be addressed to:Dr. Servais; Service of Pediatric Neurology and Metabolic Diseases; Hôpital Robert Debré (Assistance Publique-Hôpitaux de Paris); 48 Bvd Serurier; F-75935 Paris Cedex 19, France.

 

Best wishes -

PANDAS_Denmark

 

 

 

I am desperately looking for any information on other cases in which the underlying cause for the PANDAS symptoms are Mycoplasma pneumoniae and not Strep.

 

Our Sandra is clearly such a case (5 years). Since the onset in 2005 her MP IgG are positive, elevated up to 6 times compared to the base value, and fluctuate, and so are her leucosyte values.

 

I told about her case on http://www.latitudes.org/forums/index.php?...d&pid=41310

 

After getting hold of the Saving Sammy book and getting doctors to read it, we are finally getting somewhere with doctors accepting the idea of trying long term suitable antibiotics and/or other treatments, starting with the less invasive and harmful ones.

 

I am now looking for information on similar cases treated, by whom and with what degree of success.

 

If any of the doctors who treated such patients is reading this message. Would love to have you assist the Finnish doctors on the case. Please get in touch (batsheva.myllys(at)gmail.com).

 

I believe that Sandra can be saved and still have a normal future. She will be 20 next month, a quarter of which has been made real ###### by PANDAS-PITANDS.

 

Bat-Sheva Myllys

Finland

Link to comment
Share on other sites

Hi again :wacko:)

 

Just found another article, that might be of benefit :

 

"Rev Med Brux. 2008 Mar-Apr;29(2):103-6.

 

[Acute disseminated encephalomyelitis associated with mycoplasma pneumoniae infection]

[Article in French]

 

Njeukui Tchoua J, Noel S, Sellitti E, Vanderheyden JE, Blaze V.

 

Service de Neurologie, C.H.U. de Charleroi, Site Vésale, Montigny-le-Tilleul. njeukui@hotmail.com

 

A 20-year old man was hospitalized for acute urinary retention, headaches and mild fever. Neurological examination revealed a meningeal syndrome and a bilateral pyramidal syndrome of lower extremities with a C7 sensory level. The level of antibodies against Mycoplasma pneumoniae (Igm and IgG) suggested a recent unrecognized infection. Cerebral and medullar MRI showed T2-hyperintense lesions in the right thalamus and at the level of C1-C2 and C6. Evoked potentials were normal but EEG showed some bilateral theta waves. The cerebrospinal fluid analysis demonstrated 170 white cells/mm3 with 66% lymphocytes and proteins at 73 mg/dl. A few weeks after treatment with intravenous immunoglobulins at 0.4 g/kg/day for 5 days, the patient showed complete clinical recovery. MRI and urinary flowrate normalized after nine weeks. The authors are discussing the probable diagnosis of acute disseminated encephalomyelitis occurring after a mycoplasma unrecognized infection"

 

----

 

And a third ;-)

 

"Pediatr Neurol. 2008 May;38(5):357-9.

 

Mycoplasma pneumoniae encephalopathy: recovery after intravenous immunoglobulin.

Attilakos A, Palaiologou P, Lagona E, Voutsioti A, Dinopoulos A.

 

Department of Pediatrics, Athens Medical Center Hospital, Athens, Greece. attilakos@hotmail.com

 

In a case of Mycoplasma pneumoniae encephalopathy in a 7-year-old girl, the microorganism was identified by serologic and pharyngeal-swab polymerase chain reaction methods. Failure to detect or isolate the pathogen in the cerebrospinal fluid and the significant rapid clinical recovery of the patient after intravenous immunoglobulin administration suggest an immune-mediated mechanism. In critically ill patients with M. pneumoniae encephalopathy, prompt intravenous immunoglobulin treatment may be beneficial and can be considered as a primary or alternative therapeutic approach, especially when use of corticosteroids is insecure."

 

PMID: 18410853 [PubMed - indexed for MEDLINE]

 

 

I am well aware, that PANDAS/PITAND isn´t mentioned in the abstracts - and possible not in the articles either.

However PANDAS is by several doctors/scientists considered a subcategory/variant of ADEM, Acute Disseminated EncephaloMyelitis (or MDEM : Multiphasic Disseminated EncephaloMyelitis).

 

All of my best wishes to you and your daughter !

 

PANDAS_Denmark

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share


×
×
  • Create New...