GatsMom
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Thanks to Dr. T., my son was tested for Mycoplasma and it is elevated 3 x the norm. Thanks again Dr. T. and thanks for all your hard work. I can't wait to see my son well again some day.
My son is another mycoplasma kid, discovered because of Dr. T. Yes, it does mean a different abx...a macrolide..like Azith or Biaxin (clarithromycin). Mine didn't respond initially to Azith but had a nice result from his first 5 days of Biaxin. We've had to abandon all meds in the past 48 hrs because of a stomach bug (which is really spinning his anxiety through the roof). My son is also completely asymptomatic with his mycoplasma...only his PANDAS symptoms of ocd, anxiety, tics, etc. Had Dr. T not tested for it, we would have never known.
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Recently, I was advised to take my 17 year old daughter to a "professional" who "specializes" in PANDAS. I will not mention any names, but I will say that she supposedly helped someone's son.. this was publicized recently in a book form... Got the picture?
Ok.. first appointment. Documentation 3 hours. Daughter seen alone (aunt and uncle accompanied her)- daughter is dillusional when it comes to family... but somehow her "word" was taken as gold.
DID NOT SEE DR. SAW NURSE PRACTITIONER.
Second appt. Parents only.
2 hours with NURSE PRACTITIONER. Went over same info. that was given via phone in prior appt. (Could not be in same room with daughter - she has meltdowns, so Mom was present first appt via phone)
Both these appointments consisted of compiling my daughter's medical history, and her exaccerbations coinciding with illness. Did my daughter have many strep infections as a child? Yes. Did she have her tonsils removed? Yes. Did she exhibit OCD symptoms on and off? Yes. Were her exacerbations stronger every time around? Yes. Did she have motor or verbal tics? Yes. Did she ever rage? Yes.
To name a few...
After compiling all this data, driving 3 hours, spending the nite in a hotel room because appt was rescheduled due to storm, and getting my hopes up, again, that someone with a specialty in this area would take interest in my daughter and actually want to help her, I received a phone call today, a week later, from the NURSE PRACTITIONER, who suggested prozac!!!!!!! Not sure, they say about PANDAS, but my daughter was on many meds of this sort, and only became more symptomatic.
She didn't seem to see a correlation between rages and PANDAS (?!!) and pretty much, after $1000, not once ever meeting this Dr., I am left right where I started...
Has anyone else had experiences similar? And, does anyone know of cases diagnosed after child is a teenager?? Any successes?
Please help. I am so disheartened.
Thank you!!!
I'm so sorry. I have a teen, too, though his first exacerbation was at age 8. I think many, if not all, of us know the feeling of running your head into a wall in an attempt to get help for your child. Have you considered contacting Dr. T or Dr. K? My son is a patient of Dr. T's and while he's sometimes tough to get a hold of, he's very dedicated to these kids and you won't have to work to convince him of the impact or severity of her symptoms.
Gat's mom
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Thank you all for your input here.
I met with my local prescribing doctor today (different person than the PANDAS advisor we're using), and we decided to go ahead and finish the 28 days. He says 3-4 weeks is generally the time he hears being used for antibiotics, to make sure they've really taken care of something. This is general information and not at all specific to PANDAS. So, given this, and that I really have seen some improvement, and exactly the concern jewels mentions (not wanting to leave just a few bacteria left and let them grow back to tougher/meaner ones), we are going to finish the 28 days, then reassess, and by then lyme test results will be in to add more information.
He also took a biopsy today of something on my chest that I thought of as a mysterious bug bit, which I have had come and go sporadically for at least a couple/few years (perhaps longer). I call them mysterious, because of how they arrive, for example, this one, I'm feeling fine, sitting on the couch inside, well clothed, shirt and sweatshirt as well as other clothes, and all of a sudden it is terribly itchy there, looks like a bug bite (smaller than from mosquito), and it's not like there were any bugs visibly flying around that might have done it. He said it looked like a "insert lots of big fancy words here", meaning not too much to worry about, but a lesion not at all from a bug. But, given the various puzzling aspects of my situation in general, he took it out and sent it off to see if we might learn something, anything, as things aren't always what they look like.
My plan really had been to take a break from antibiotics after the 28 days, because of the yeast/fungus issues. At the beginning of the biaxin, I had a horrible yeast/fungus issue. I have been dealing with a serious yeast/fungus issue for years, it is obvious now, but addressing it with 3 antifungals for a couple months, and with a lot of progress. So the yeast/fungus outburst with the introduction of antibiotics surprised me, indicating there is still much to be done there. It has stabilized during the antibiotics, but only with me taking 15 or so pills of probiotics every couple hours while awake, and once or twice in the middle of the night. Quite a grind! That's why I am eager to be done with antibiotics and take a break and get even more serious with the yeast/fungus in order to avoid going through this again.
If I get to it, I think the augmentin will be interesting. I can't swallow pills, and I see it does come in an oral suspension, but I'm sure the time release part will be gone there. Perhaps I'll just be spreading the doses out throughout the day, must say it's good I'm not trying to work these days, with all the time spent on pill-taking.
Goodness, given MomwithOCDson's and Vickie’s posts, it looks like a real thing to assess after the month whether to keep going with the biaxin. Not wanting to quit too soon, but not wanting to waste all this time when there are clearly other things to try and address. Of course, that experience is kids, where the long-term antibiotics are sometimes used, and maybe the reason that is needed for some is the same reason it takes longer for some. Quite a puzzle sometimes.
Michael
As you know, Michael, we're right behind you. This is day 7 of biaxin 500mg twice daily for Gat. I wanted to wait to post, officially, on his last 7 days until I was really certain (I think we all have varying degrees of jinxing our success) but today, even Gat said in the context of a discussion with his girlfriend, "...and now that I'm getting better...". We are continuing to see gains that sound much like yours, Michael. Dr. T told me from the onset when looking at Gat's labwork surprise that we should see improvement within a few days once starting the right abs and we certainly have. Gat's initial Rx for Biaxin is for 10 days but he also gave us 2 refills. I will be contacting him to report in but will be pushing to finish a full month on Biaxin. Also like you, Gat is forever in a fight with yeast. We've got it barely under control but it is a day by day issue and dropping the ball for even a day will have serious backlash on him. In my opinion, we've come too far and waited way too long to get on the right abx to quit too soon. I know once the abx are discontinued or brought down to a prophylactic dose, I can get yeast under control. We have NEVER taken any medication in the 8 years that we've been dealing with this that has produced a result as noticeable as what biaxin has. I've read that folks can have a myco p for many years, often unaware of it because of nonclassic symptoms. Since Gat never got back to 100% after his last exacerbation 4 yrs ago, I'm inclined to believe that its possible he may have had some infection underlying all this time. One would think it would take more than 10 days or 2 wks to rid yourself of an infection the body's had on board that long. We have a long way to go, but this is the first forward movement we've seen in 9 wks of sliding backward (including 17 days of augmentin 1000mg xr twice daily).
I really think you are on the right track, Michael. Keep up the good work!
Gat's mom
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Will keep you in our prayers, know its really hard to go through but stay strong!
Have thought about you many times since reading this earlier today. Have nothing to add except to say that you did a great job of handling a situation that absolutely had to be handled. Stay strong and know that others have been where you are and are keeping you in their thoughts.
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Hello everyone, we survived the IVIG, it was a long night last night. Lauren was a little sick last night but all in all it was no worse the flu. Her fever is almost gone this morning and we are going to try to go eat something at the Hotel. I pray we get good results we will keep you posted. God Bless.
-Doug
Good for you! Good for Lauren! They go through so much. I hope this is a huge success for her.
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Does anyone know if merely unplugging my wireless router from the electricity in the wall is enough at night?
Many thanks
The interesting thing about your question to me is, it reminds me of how being sensitive to these things as I have been for so many years puts me out of touch in how these things actually work, in that I've been avoiding them. What devices are involved in your setup? If it's just computers and the wireless router, then I think you'll have it covered when you address them. I'd want to make sure the wireless router wasn't sending out any signals. If it has no power, it can't do that, so sounds like that'll work as long it doesn't also have a backup battery. Computers set up for wireless also send out signals if they are left on, unless you flip the switch telling it to not do wireless. Are you using one of these hookups from a phone line or cable line? Is there a connection from those lines to the wireless router, or is the router the connection? That's where, never having seen one, I don't know, but if there is a third piece in the setup, you might want to disconnect it, or find out (from a knowledgeable source or from a meter) that it is harmless.
Michael
No battery backup to my router. Unplugging it from the wall shuts the thing down completely and there is no wireless access in the house except in one spot in the living room where we can pick up a neighbors. I make him charge his computer now in the living room (about as far from his room as possible). Last night I threw the breaker to his room after he was asleep. He was none the wiser that his phone was not actually charging as he thought it was. He has a dimmer switch on his ceiling fan but its the kind that snaps all the way to an off position so I'm hoping that's ok. My guess is that kid was exposed to less emf's last night then he has been in a long time. It certainly won't do him any harm and hopefully it will help deliver some relief. Thanks for your input, Michael.
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So, it's like the abx is drawing out the bacteria and that's why symptoms are surfacing after starting it. So, if you look at it from that perspective, I would think it means the meds are working and now his body can start fighting it!
That, or there's the die off concept that when bacteria or fungi are killed in large quantities (at the hands of the abx) there is a load of toxic remains for the body to have to process. I couldn't begin to venture which is going on though I know either would be considered a step in the right direction. As sick as this kid is, I know his body has been given a huge chore in recovering itself. In my heart, I believe fully that the sooner you are on these pathogens the easier the recovery would be. We were 8 hard weeks in which is an improvement over being many months or years in, I guess. I know we all have it but its so hard to stay positive watching your child endure something to cruel with very few cut and dry answers.
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I feel for him with that cough and fear of throwing up. It's like one of those when you feel like you can't take a deep enough breath. After awhile his abdomen might hurt from the forceful movement too.
Now don't do this w/o talking to a dr, but do you think cough medicine would help? I am usually anti-cough med, but with Mycro P, people cough because (oh, can't think of the technical term), something paralyzes and can't move, that causes the cough. Again, I'm usually anti cough meds, but if his fear of throwing up is increasing, talk to his doctor about the possibility. Who's his dr? Dr T. Please just talk to his doctor first before giving anything.
Vickie, I was thinking just like you. Last night I had my Gat's dad go out and get my cough medicine (one without a drowsy quality & one with as well as a selection of cough drops). I had decided I would either wait to hear from Dr. T and his suggestion and try not to use either until then (unless things got crazy). Like you, I believe fully that a cough is the body's way of casting off a toxin of some kind (like a sneeze) but I had to be ready to weigh out the collateral damage, emotionally, of being taken to a high level of anxiety. Thankfully, it never came down to that decision. He did take his second dose for me last night with little grumbling. No coughing even as he tried to go to sleep. He also fell asleep within 30 minutes of going to bed...the best time in nearly a month. He woke up at 4:45 for a drink and I though there would be coughing (throat clearing and sniffing) as he tried to get himself back to sleep but there was none, though it did take him nearly an hour to get back to sleep. He woke up for good (wide awake) at 10:30. Ok, that's 2 days in a row of less than 12 hrs of sleep. He showered (with the door closed!) and looked for something to eat. Usually it takes hours for him to find something he's willing to eat. My biz partner was a respiratory therapist in her past life & I talked to her about the cough. She said that in many pneumonia patients who were surpised to learn they had it because they had no horrible cough or wheeze, she had to inform them that starting the abx would bring about those symptoms for a few days. Today we're praying that his otherwise strong body is fighting this myco p like a champ and maybe our isolated couple hours of coughing yesterday will be the worst of it. So for now, the cough meds stay unopened.
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Giant thank you to all who offered so much support to me after our visit with Dr L. We have since consulted with Dr T and he tells me this "club" is exactly where I belong. He has confirmed a diagnosis of PANDAS (classic onset at age 6-7) that has now broadened into a somewhat complex PITANDS situation. We are still going to follow up with the neurolgical testing recommended by Dr L, but Dr T is going to run some more labs to dig into my son's immune system a bit further to see if we can find any specific trigger. Also met with our psychiatrist and therapist, neither one of whom feels my son fits the bipolar criteria. Our therapist in particular is excited about Dr T's "exorcist" observation as a neurological storm of fight or flight chemicals released as he feels this very accurately describes my son's experience. He observes that my son is able to manage his obsessions when he is healthy, but not when sick. And he seems to be ALWAYS sick this year. To me, it's as if the virus/bacteria enters his system, we have this rage/terror attack and then a few days later the physical symptoms show up. As is his pattern, my son had another one of the "exorcist" episodes on Sunday after going 8 days without. And yesterday - sick AGAIN!! THis time looks like a cold (congestion, hacking cough, no fever). I'm assuming its viral since he's been on Omnicef for a month, and am hesitant to drag him into the ped. only for her to frown at me and tell me it's viral.... I wish I could figure out why he having so many upper respiratory problems this year!!! On the bright side, he is calm, as usually when the illness hits he feels so icky he can't muster up the energy to do anything much but whine... Thanks again to all (especially Dr T!) for your help and support.
Boy, am I happy for you, if that makes sense. I can hear the hope in your words. He's a great doc, no question about it and who knows what he'll dig up when looking more closely at his immune system. You have direction and that's so important. By all means keep us posted. I'm sure sorry he's feeling crappy now but hope the downtime can supply you with some peace and time to focus on the answers that are surely coming.
Gat's mom
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Michael (from Tampa) said he had a cough too I think shortly after starting meds for mycroplasma. Do you think the meds are making the bacteria come more to the "surface" and making some symptoms appear? Weird.
Lyme mom and Vickie: Thanks so much ladies. It's been a day here. I did read that article about the Gulf War Illness a couple days ago..very interesting stuff. I didn't know that Azith and Biaxin were good choices for Lyme so I do feel better about that. I'll be pushing for a repeat of almost all bloodwork in a month or so which I'm hoping will support on paper the recovery in my son (how's that for sounding hopeful?) Michael did mention to me his cough around day 7...thank Heaven he did too or I would have lost my mind today. I do believe that a herx shows a step in the right direction. I couldn't guess as to the mechanism behind a cough in an asymptomatic myco p kid except to say that the antibiotic is getting to the infection and the cough is the body's way of trying to rid itself of it. I haven't heard from Michael as to the duration of his cough and I just can't find enough among our peers to see what I can expect for my lad. I will say this, his cough started within an hour of him being awake. The meltdown was after an hour of so of coughing. Several hours later, it was gone. He says if he takes a very deep breath he feels like coughing but he hasn't made a noise since early afternoon. We've discussed logically the cough, that it doesn't mean in an way vomiting and I showed him the labs and all the data showing this medication for that infection to try and instill some faith. He's just been through so much and is old enough to know how many dead ends we've been down. He's an otherwise strong, healthy 16 yr old. Maybe the cough was the effect of sleeping still all night and we'll only have it a time or so before the abx kill it all off and he can have some relief. Again, it is so good to have support. Thank you, thank you!
Gayle
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Boy do I wish I had this information four years ago...and eight years ago when the whole nightmare got underway.
Mycoplasma pneumoniae infection and Tourette's syndrome.
Muller N, Riedel M, Blendinger C, Oberle K, Jacobs E, Abele-Horn M.
Hospital for Psychiatry and Psychotherapy, Ludwig-Maximilians-University Munchen, Nussbaumstrasse 7, D-80336 Munchen, Germany. nmueller@psy.med.uni-muenchen.de
An association between infection and Tourette's syndrome (TS) has been described repeatedly. A role for streptococcal infection (PANDAS) has been established for several years, but the involvement of other infectious agents such as Borrelia Burgdorferi or Mycoplasma pneumoniae has only been described in single case reports. We examined antibody titers against M. pneumoniae and various types of antibodies by immunoblot in patients and in a sex- and age-matched comparison group. Participants comprised 29 TS patients and 29 controls. Antibody titers against M. pneumoniae were determined by microparticle agglutination (MAG) assay and confirmed by immunoblot. Elevated titers were found in significantly more TS patients than controls (17 vs. 1). Additionally, the number of IgA positive patients was significantly higher in the TS group than in the control group (9 vs. 1). A higher proportion of increased serum titers and especially of IgA antibodies suggests a role for M. pneumoniae in a subgroup of patients with TS and supports the finding of case reports implicating an acute or chronic infection with M. pneumoniae as one etiological agent for tics. An autoimmune reaction, however, has to be taken into account. In predisposed persons, infection with various agents including M. pneumoniae should be considered as at least an aggravating factor in TS.
PMID: 15590039 [PubMed - indexed for MEDLINE]
1: Pediatr Neurol. 2004 Aug;31(2):119-21. Links
Restless legs syndrome: association with streptococcal or mycoplasma infection.Matsuo M, Tsuchiya K, Hamasaki Y, Singer HS.
Department of Pediatrics, Faculty of Medicine, Saga University, Saga, Japan.
Group A beta-hemolytic streptococcal infections have been reported to cause neuropsychiatric symptoms, such as chorea, tics, and obsessive-compulsive disorder, presumably through autoimmune damage to basal ganglia. Mycoplasma pneumoniae infections have also been reported to cause damage to the basal ganglia. Restless legs syndrome is a movement disorder with focal restlessness, an irresistible desire to move, and exacerbation by long periods of sitting or lying. We present three children with transient restless legs syndrome-like symptoms possibly associated with group A beta-hemolytic streptococcal infection or Mycoplasma pneumoniae infection. One of three patients had persistently elevated enzyme-linked immunosorbent optical density values against human caudate and putamen.
PMID: 15301831 [PubMed - indexed for MEDLINE]
17 v 1! Really!? I'd call that a little more than "significant".
That is extremely interesting and the article mentions other infections like Borrelia Burgdorferi, which is the real name for Lyme Disease. I have read that 60 percent of lyme patients are "co-infected" with Mycoplasma P. The problem is the tests for Lyme are so unreliable that you could have it and not know it. I am pretty sure that the drugs used to treat lyme, treat Mycoplasma, but not sure if it works the other way around. Having multiple infections apparently makes it hard to get rid of lyme and the same is probably true with respect to strept, as you mentioned.
When my son's recent labs came back and he was negative for Lyme, I wondered how accurate that might be. I've read your posts about how to go about testing for Lyme through different labs. I pray to not have dig for more co-infections after treating mycoplasma.
I spent the entire day looking for literature on possible healing regressions (herx reactions) in asymptomatic patients when starting antibiotics to treat for mycoplasma. Not an easy task. He had a bad cough (most dry) shortly after waking up. It was not there yesterday. It triggered every vomit fear in him and was the catalyst to a huge meltdown and a day not nearly as beautiful as yesterday's. Now he's balking at taking the biaxin. I can't take much more.
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Boy do I wish I had this information four years ago...and eight years ago when the whole nightmare got underway.
Mycoplasma pneumoniae infection and Tourette's syndrome.
Muller N, Riedel M, Blendinger C, Oberle K, Jacobs E, Abele-Horn M.
Hospital for Psychiatry and Psychotherapy, Ludwig-Maximilians-University Munchen, Nussbaumstrasse 7, D-80336 Munchen, Germany. nmueller@psy.med.uni-muenchen.de
An association between infection and Tourette's syndrome (TS) has been described repeatedly. A role for streptococcal infection (PANDAS) has been established for several years, but the involvement of other infectious agents such as Borrelia Burgdorferi or Mycoplasma pneumoniae has only been described in single case reports. We examined antibody titers against M. pneumoniae and various types of antibodies by immunoblot in patients and in a sex- and age-matched comparison group. Participants comprised 29 TS patients and 29 controls. Antibody titers against M. pneumoniae were determined by microparticle agglutination (MAG) assay and confirmed by immunoblot. Elevated titers were found in significantly more TS patients than controls (17 vs. 1). Additionally, the number of IgA positive patients was significantly higher in the TS group than in the control group (9 vs. 1). A higher proportion of increased serum titers and especially of IgA antibodies suggests a role for M. pneumoniae in a subgroup of patients with TS and supports the finding of case reports implicating an acute or chronic infection with M. pneumoniae as one etiological agent for tics. An autoimmune reaction, however, has to be taken into account. In predisposed persons, infection with various agents including M. pneumoniae should be considered as at least an aggravating factor in TS.
PMID: 15590039 [PubMed - indexed for MEDLINE]
1: Pediatr Neurol. 2004 Aug;31(2):119-21. Links
Restless legs syndrome: association with streptococcal or mycoplasma infection.Matsuo M, Tsuchiya K, Hamasaki Y, Singer HS.
Department of Pediatrics, Faculty of Medicine, Saga University, Saga, Japan.
Group A beta-hemolytic streptococcal infections have been reported to cause neuropsychiatric symptoms, such as chorea, tics, and obsessive-compulsive disorder, presumably through autoimmune damage to basal ganglia. Mycoplasma pneumoniae infections have also been reported to cause damage to the basal ganglia. Restless legs syndrome is a movement disorder with focal restlessness, an irresistible desire to move, and exacerbation by long periods of sitting or lying. We present three children with transient restless legs syndrome-like symptoms possibly associated with group A beta-hemolytic streptococcal infection or Mycoplasma pneumoniae infection. One of three patients had persistently elevated enzyme-linked immunosorbent optical density values against human caudate and putamen.
PMID: 15301831 [PubMed - indexed for MEDLINE]
17 v 1! Really!? I'd call that a little more than "significant".
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Boy do I wish I had this information four years ago...and eight years ago when the whole nightmare got underway.
Mycoplasma pneumoniae infection and Tourette's syndrome.
Muller N, Riedel M, Blendinger C, Oberle K, Jacobs E, Abele-Horn M.
Hospital for Psychiatry and Psychotherapy, Ludwig-Maximilians-University Munchen, Nussbaumstrasse 7, D-80336 Munchen, Germany. nmueller@psy.med.uni-muenchen.de
An association between infection and Tourette's syndrome (TS) has been described repeatedly. A role for streptococcal infection (PANDAS) has been established for several years, but the involvement of other infectious agents such as Borrelia Burgdorferi or Mycoplasma pneumoniae has only been described in single case reports. We examined antibody titers against M. pneumoniae and various types of antibodies by immunoblot in patients and in a sex- and age-matched comparison group. Participants comprised 29 TS patients and 29 controls. Antibody titers against M. pneumoniae were determined by microparticle agglutination (MAG) assay and confirmed by immunoblot. Elevated titers were found in significantly more TS patients than controls (17 vs. 1). Additionally, the number of IgA positive patients was significantly higher in the TS group than in the control group (9 vs. 1). A higher proportion of increased serum titers and especially of IgA antibodies suggests a role for M. pneumoniae in a subgroup of patients with TS and supports the finding of case reports implicating an acute or chronic infection with M. pneumoniae as one etiological agent for tics. An autoimmune reaction, however, has to be taken into account. In predisposed persons, infection with various agents including M. pneumoniae should be considered as at least an aggravating factor in TS.
PMID: 15590039 [PubMed - indexed for MEDLINE]
1: Pediatr Neurol. 2004 Aug;31(2):119-21. Links
Restless legs syndrome: association with streptococcal or mycoplasma infection.Matsuo M, Tsuchiya K, Hamasaki Y, Singer HS.
Department of Pediatrics, Faculty of Medicine, Saga University, Saga, Japan.
Group A beta-hemolytic streptococcal infections have been reported to cause neuropsychiatric symptoms, such as chorea, tics, and obsessive-compulsive disorder, presumably through autoimmune damage to basal ganglia. Mycoplasma pneumoniae infections have also been reported to cause damage to the basal ganglia. Restless legs syndrome is a movement disorder with focal restlessness, an irresistible desire to move, and exacerbation by long periods of sitting or lying. We present three children with transient restless legs syndrome-like symptoms possibly associated with group A beta-hemolytic streptococcal infection or Mycoplasma pneumoniae infection. One of three patients had persistently elevated enzyme-linked immunosorbent optical density values against human caudate and putamen.
PMID: 15301831 [PubMed - indexed for MEDLINE]
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Hi Dut,
Are my suitcases as big as your sacks! Do you use epsom salt baths?
When dd is in PANDAS mode we use e.s. bath followed by a massage, and we have an allergy air purifier plugged in day and night in her bedroom. This has gained us more sleep unless she has a cough.
Good luck
Jules.
How about melatonin in addition to epsom salts baths?
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Hello,
I only post here occasionally (I should do more!), but I continue to find this forum, and all of your advice, to be invaluable.
I just wanted to post about a change we have made that has affected my daughter’s behavior quite dramatically (her background below). And I am curious to hear others experience’s / comments. (I will post on both Tourette’s and Pandas forums).
About 10 days ago I disconnected/unplugged our home cordless telephone system. I did this because sadly another friend of mine has developed terminal brain cancer and I decided to go back and use the “old fashioned” corded phones only (and severely limit cell use). We also only very occasionally turn on a wireless router. Anyway, after several days I realized that my daughter was no longer having her daily (or multi-times daily) rage and anger outbursts. I mean NONE. This has never happened, and it completely coincides with our unplugging the cordless phone (which she used to sit near in the kitchen area). She has been the most complacent and sweet natured kid EVERY DAY. I can not tell you how amazing this is. For myself and my husband, we can say we notice that we feel “better/calmer” in some slight way, but for my daughter the change has been dramatic.
I see that there have been a couple of other posts here about EMF (electromagnetic field) sensitivity, and I have been researching extensively since noticing a correlation. Apparently EMF creates an opening in the blood brain barrier. They disrupt neurocognitive functioning, disrupt neurotransmitters (serotonin etc.). People who are chemically sensitive are likewise more sensitive to EMFs.
Please let me know what your experiences may be.
Also, please consider unplugging your cordless phones, home wireless systems and turning off cell phones in the house for a few days and see what reactions your or your children have.
Thanks for reading!
[background---- my daughter is nearly 8yo. She’s had a long battle with lyme disease that’s left her with a propensity for tics and OCD. She goes through periods tic-free, but at other times they return to varying degrees. We’ve been on long term antibiotics, but are off now. She’s quite chemically sensitive, and we have great luck when we really watch her diet and limit as much toxic exposure as possible.]
Does anyone know if merely unplugging my wireless router from the electricity in the wall is enough at night?
Many thanks
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Michael:
thanks for the excellent explanation -- and clarifying the diffent types of emf (wireless devices; and general electrical current and appliances). Don't forget the power lines leading into a person's house.
I have ordered a meter to measure our house, and am waiting to receive it. I'm very curious to see where the hot spots are! Most particularly, I'm worried about my daughter's bedroom, and may go ahead as suggested by someone else and flip the breaker at night to shut off the power to her room. I'm also going to check with our next door neighbors to see if they are running a wireless router at night.
I think given all the various exposures we encounter during the day, our sleep environment should be as much of a sanctuary as possible to allow our body to heal and restore itself as it is meant to during sleep. And by exposures, I don't just mean emf's, but toxins of all kinds.
I agree. While I can't control what he's exposed to in the community, I would think it would be so beneficial to contain exposure while he sleeps and hopefully make it easier for his body to do the healing its trying to do.
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From what I have read, Azith does clear most people of Mycroplasma P. Also, some people can actually clear themselves of it over time w/o abx. It is also known as walking pneumonia and community pneumonia. Walking pneumonia because a good portion of people don't even know they have it. Community pneumonia because it is contagious and people who are clustered together (say in a classroom) can spread it to each other. I believe this is how my non-PANDAS so caught it. That rough, unproductive cough was rampant in the school at the time. The thing is a lot of people dismiss the cough as a symptom of a cold or allergies and don't go to the dr.
As for whether other family members should be tested I don't know. If you're going through IVIG treatments and such, I would think that it doesn't hurt for you, the parent, to get tested, but really don't know. What kind of "scared" me about it is that it is described as "smoldering". A person can have contracted it for 20 days and just be showing symptoms.
As for why PANDAS kids may be non-symptomatic with it...well, compare it to PANDAS kids and strep. A very high number do not get symptoms. Most "non PANDAS people" get over strep w/ amoxicillan. Not the case for PANDAS. So, for Mycroplasma P, most people get over it w/ Zith. Maybe it's not the case w/ PANDAS kids. Or docs don't know how long the infection has been either and perhaps Biaxin is much stronger than Zith.
So...
Amox is to Zith/Augmentin for PANDAS as Zith is to Biaxin for Mycroplasma P? Anyone know if this is the case?
Also, w/ PANDAS kids, a very high number are non-symptomatic w/ strep. Other parents will tell stories, how their child has allergies w/o physical symptoms or other illness w /o textbook symptoms. So, I don't see why we should necessarily be surprised if it's the case w/ Mycroplasma P as well.
As for PANDAS symptoms, well, if Mycroplasma P is the original trigger, I would think the child is more PITANDS. If the child's original trigger was strep and now reacts to Mycroplasma as well...well most kids do react to other things like viruses, infections, etc...so I don't think I would be surprised if Mycroplasma P would be a trigger too.
Bat Sheva Myllys has been dealing with Mycroplasma P and her daughter for awhile. She's busy and doesn't check the forum often. I'll pm her and ask her to join in on this if she has the time. Maybe she can share what she has learned.
I have one of those "no outward symptoms" kids. Both the strep of middle school and the myco p of this exacerbation have been completely and utterly without classic symptom presentation. How to handle the fact that is often sick without noticeable signs (until things are really bad) is what we'll be working on down the road. Right now my main objective is getting this myco p out of his system and seeing if we need to address the slightly elevated ASO titer we had this time.
I should mention, he slept 9 hours last night instead of the usual 12. Way less throat clearing at bedtime and no apparent anxiety though it did still take him til nearly 1a to fall asleep. Today is day 3 of Biaxin and half dose of steroids.
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Does anyone on here have a family member or know anyone personally that has been cured of PANDAS? The only person I have heard of that was cured of PANDAS was Beth Maloney's son. It would be nice to know that there are a lot more out there.
Four yrs ago, the very week I found PANDAS during my nightly online symtpom cluster searches, my exhusband was talking to his 20'something neighbor who was asking how Gat was doing knowing how sick he was. She was standing with a friend about the same age. When my ex explained that I found what I was sure was it (PANDAS) the young girl with her became teary and explained that 10 yrs b4 she had been diagnosed with it. She told my ex about the ###### she and her parents went through and by then all three of them standing there were in tears. He said that although he was almost afraid to ask, he felt he had to and said, "What is your life like now?" Then she really cried hard and said, "Tell her and your son that my life is beautiful now." She went on to say that she recovered fully, her parents recovered fully and they all lived happily with it just being a memory. He never saw her again but learned that her name was Colleen. I have used that conversation as my anchor on more than one occasion and refer to her as The Angel, Colleen because that was surely an act of Providence to stumble onto her in our one horse town.
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Hi
I am scheduled for a Dr app on monday for dannys immunologist ,His 2nd IV treatment is scheduled for Friday.I am going to ask her about the mycoplasm and antibiotic to treat it.I am going to email dr T and ask him to speak with her.I know they have worked together in the past.Dr T is Dannys neurologist and has preformed several tests .He is the one who initally got him approved for the IV treatments.
I am still unclear about the connection of pandas and mycoplasm .I know Dr T is very interested in the connection. I see there are others also interested and treating it.
Is it contagious? Does the rest of my family have it?Azith doesnt treat it and clindimyicin doesnt but biaxin does?
I need biaxan?
Melanie
Melanie,
Azith does treat it, we just didn't see a result in my son with it. Biaxin, I believe, is a bigger gun. Both antibiotics are in a class called macrolides which is the class used to treat myco p.
I'm wondering, like you, if the rest of the family should be tested/treated.
Gat's mom
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Hi- for those of you using GABA-
How effective has it been for sleep, especially staying asleep?
For how many days/weeks was it taken before any effect was seen?
And has anyone seen the opposite effect to that you expected eg a ramping up in hyper/anxious behaviour or a wrosening of sleep?
thanks :-)
I learned something interesting about GABA from our herbalist. She gives what she calls the GABA challenge test when she suspects a problem with the blood brain barrier. She gives the GABA and if the patient feels any sensitivity to it (relaxed, calmer etc) she knows the patient has an BBB issue. She told me the GABA molecule is large enough that it should not be able to pass across the barrier and if it does and an effect is felt it's a not a good sign. The first order of business she would recommend with someone who does respond is switching to a gluten free diet. Just thought I'd throw it out there in case your kiddo sees a benefit from the GABA. I've never cross-referenced this information, just passing on what a very bright practitioner told me.
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[so if you take the antibiotic Biaxin does it clear up the infection and maybe some PANDAS symptoms
We'll see, I suppose. This kid is having the best day he's had in the better part of a month. The biaxin is specifically to treat mycoplasma. I don't know if it is particularly useful for strep. I do know that Azith can work for both strep and myco p but in my son, his 17 days of azith didn't seem to produce a result and certainly nothing like what we've seen so far today. We also started a 5 day dose pack (which we are doing about about half strength due to his sensitivity to stimulating meds) so I know that, too, may be to credit for his good day...or it could just be a good day. We'll see how things go tomorrow. I'm just so thankful that Dr. T tested him for this and the other pathogens. He had no symptoms that could even remotely be considered pneumonia prior to or during this exacerbation so we would have never thought about myco p had we not tested for it.
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Great article. Thank you. I'm going to do the same, make copies and hand them out.... A big "thank you" for posting this... it is one of the easiest reads that I've come across... I'm going to make copies to hand out to family members and others who are having a hard time understanding and accepting what I've tried to explain to them...Comments from both Dr. Swedo and Madeleine Cunningham
How Does Strep Lead to Psychiatric Symptoms?
The discovery of PANDAS came through observing the reactions of patients. Initially, Swedo's team noticed a group of patients who were ill with infections and then suddenly developed dramatic psychiatric symptoms. At first, they were not sure streptococcus was the culprit but research soon isolated the strep antibodies as an important focus of interest.
PANDAS is controversial in medical circles with some physicians questioning whether such extreme psychiatric symptoms can be triggered by strep antibodies. However, according to Dr. Swedo, there is little doubt that the body's efforts to fight the strep bacteria set off a chain of events leading to PANDAS symptoms. "The science is clear now," Swedo asserts. "We not only have a direct relationship between the anti-strep antibodies and the anti-neuronal antibodies, but also have demonstrated that the antibodies interact with receptors in the brain that could produce the symptoms observed."
Normally when the strep bacteria enter the body, they defend themselves by mimicking healthy cells and elude detection by the immune system. Using the stealth strategy, the strep bacteria create an infection. In response, the body naturally creates antibodies - cellular components designed to find the bacteria, bind with them and direct the immune system to destroy the bacteria. When this happens as designed, the antibodies find the strep bacteria and the immune system wins the battle.
However, antibodies are not terribly discriminating and sometimes cannot tell a streptococcus bacterium apart from a healthy cell. In some children, these antibodies pass into the brain and look for something to connect with. In PANDAS, the strep antibodies are unable to discriminate between strep and healthy brain cells. However, the union of strep antibody and neural tissue is not a match made in heaven. Recent research, reported last fall by University of Oklahoma researcher, Madeleine Cunningham, suggests that the antibodies connect with parts of the brain which regulate repetitive behaviors and movement, such as compulsions and tics. According to Dr. Swedo, such autoimmune actions may have the direct result of producing obsessions, compulsions and tics; and in addition, they might indirectly offset the critical balance of brain chemistry which regulates mood and emotion.
Compounding the problem is the durability of strep antibodies. They can remain on the prowl for a hook up weeks after the strep is gone. Subsequent infections or even colds can stimulate the immune system to produce more of the same kind of antibodies which the triggered the original symptoms. PANDAS children can then abruptly re-experience the same symptoms after a symptom-free span of time. Dr. Swedo explained, "We see a saw-toothed pattern of symptoms, extreme outbursts of behaviors for a brief period in response to the infections and then the child may be relatively symptom-free for a period of time."
Agree, concise and easy to under. Should be a required read for anyone who is going to work with kids. -
Here' s the website.
http://www.refresheverything.com/
Did you submit something already? If not, what do you want to submit...Dr Cunningham's research?
If we can come up with a united subject to vote on, I know my camp could supply hundreds of votes. I'll bet we all could. I saw that during superbowl, too. Great idea, P.Mom
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I just want to clarify that we are all talking about Mycroplasma Pneumonia? I think someone said the word "Mycroplasma" by itself is something different? If it's Mycroplasma Pneumonia, I think a child can have it and it's never caught. When a child does exhibit symptoms, it's a cough, sometimes accompanied by a fever. Technically, I think a person can eventually rid themself of Mycroplasma Pneumonia even if they do not go on abx, but I guess that's that is not always the case. As we see with PANDAS and strep, these kids do not fit the norm when it comes to bacteria and symptoms so I don't think we should be surprised if they can be non-symptomatic with Myco P or if their bodies somehow adjust to it and they stop showing symptoms. Even if the person is symptomatic, the cough often associated with it may not even appear for 20 days afte being infected.
Mycoplasma pneumoniae in the case of my son's labs.
It's Mycoplasma! Dr. T just sent me an email.
in PANS / PANDAS (Lyme included)
Posted
I hear ya! We're in the same boat, he found my son's, too. We've had to discontinue abx for a couple days because of a little stomach bug and his inability to eat much less take meds BUT week that we've been treating for myco instead of chasing down strep, he had a lessening in severity in all areas of his illness.
I pray you have a wonderful result now that you'll be treating the right pathogen!
Good for you!