Jump to content
ACN Latitudes Forums

Connection between mycoplasma and pandas?


scossio
 Share

Recommended Posts

I am waiting to see Dr. B, next available appt was Feb 8th. My pediatrician called and asked what labs to run so we could bring that info when we go in Feb. Results came in that he is positive for mycoplasma pneumonia. Strep titers were normal, (and he shows no antibodies to tetnus). All else he said looked ok.

Quick background...my son was typically developing, but suffered with chronic sinus infections and croup from a very young age. Had adenoids removed at age 3, sinus infections continued, but not as frequent. Croup is still chronic till this day (age 9 1/2). At age 6 he had sudden onset of symptoms (that I can not remember if in connection to a specific illness/strep). He has had strep as well as my other 2 children, one of them repeatedly leading to T&A. That same year he also developed Hashimoto's which is autoimmune thyroid disease (NO family history of). He suffers with rage, mood swings, urinary problems, anxiety, ocd, (possible coughing tic), and regression in writing (very significant), he has been to several psych drs, and tons of meds, nothing has worked in over 3 years.

Before I lose faith once again...can anyone please tell me can there be a connection to the mycoplasma and his symptoms? And if not pandas, any suggestions? Also, as far as I know he has never had a "walking pneumonia" or anything other than sinus infections and croup (and strep 2xs). I would appreciate ANY thoughts, this group has been so helpful!

Stephanie

Link to comment
Share on other sites

Mycoplasma can and does cause PANDAS symptoms. Strep is not the only infection to cause PANDAS. That's why there is a movement to change the name to PANS...pediatric acute onset neuropsychiatric syndrome. He probably needs to be treated w/ antibiotics that are effective on mycoplasma. The penicillins such as amoxicillan, augmentin, do not work on mycoplasma.

Link to comment
Share on other sites

I have a question. When my daughter first had a sudden onset of symptoms in october she was tested for mycoplasma. It said normal was under 770. Her numbers were 456. Is this something alarming do you think? Her pedi called it a negative but how is it really negative of there are some numbers?

Link to comment
Share on other sites

I have a question. When my daughter first had a sudden onset of symptoms in october she was tested for mycoplasma. It said normal was under 770. Her numbers were 456. Is this something alarming do you think? Her pedi called it a negative but how is it really negative of there are some numbers?

 

 

456 is a negative number (mine, for instance was 1750, which is clearly positive, and I was very symptomatic.)

 

OK, back to the rest of the thread. MycoP is an atypical pneumonia (basically, walking pneumonia.) It very much causes rages and other symptoms that you are seeing. As a previous response noted, not all abx works on it; typically azithromycin and biaxin are the drugs of choice. That being said, it is extremely important that you treat mycoP completely and aggressively. I had it for probably at least 3 years (at least that's how long I was symptomatic.) We didn't know that it was mycoP, but when my asthma would get bad enough, I would beg the doc for azith, and I'd get 1 or maybe 2 z-packs. The asthma would go away, but kept coming back, AND I had the dry cough, AND I had a pain in a specific spot on the right side of my chest. This was all mycoP. Long story short, it was only when Dr. B. was testing me and my DH for mycoP and strep (he does that in case we are the ones causing the kids to be sick), that's how I finally found out it was mycoP.

 

It has now been a year that I am treating this. I see a LLMD (because it turns out I also have lyme, and because mycoP can be opportunistic in lyme...it can be a co-infection of lyme.) Dr. B. started me on 1 month of azith, but really wasn't completely comfortable going that much longer, because he doesn't specialize in that (totally understandable.) I also see a lung specialist who specializes in mycoP, because I do appear to have some permanent damage. I don't want to scare you, but you really do need to act on this if there is mycoP. It is also highly contageous, so there's another reason to really get on the treatment of it. To do it right, you have to treat it long, hard, and aggressively. And, yes, mycoP could very well be, and most like is at least, part of the cause of your child's symptoms.

Link to comment
Share on other sites

Tpotter,

Now that I read your post... We see Dr. B next week for the first time. Does he typically test the whole family? We have a 2 year old and a 5 month old. We were going to leave our 2 year old home because of the 8 hour travel time, but am now wonderinf if I should bring him....

Link to comment
Share on other sites

I have a question. When my daughter first had a sudden onset of symptoms in october she was tested for mycoplasma. It said normal was under 770. Her numbers were 456. Is this something alarming do you think? Her pedi called it a negative but how is it really negative of there are some numbers?

 

 

456 is a negative number (mine, for instance was 1750, which is clearly positive, and I was very symptomatic.)

 

OK, back to the rest of the thread. MycoP is an atypical pneumonia (basically, walking pneumonia.) It very much causes rages and other symptoms that you are seeing. As a previous response noted, not all abx works on it; typically azithromycin and biaxin are the drugs of choice. That being said, it is extremely important that you treat mycoP completely and aggressively. I had it for probably at least 3 years (at least that's how long I was symptomatic.) We didn't know that it was mycoP, but when my asthma would get bad enough, I would beg the doc for azith, and I'd get 1 or maybe 2 z-packs. The asthma would go away, but kept coming back, AND I had the dry cough, AND I had a pain in a specific spot on the right side of my chest. This was all mycoP. Long story short, it was only when Dr. B. was testing me and my DH for mycoP and strep (he does that in case we are the ones causing the kids to be sick), that's how I finally found out it was mycoP.

 

It has now been a year that I am treating this. I see a LLMD (because it turns out I also have lyme, and because mycoP can be opportunistic in lyme...it can be a co-infection of lyme.) Dr. B. started me on 1 month of azith, but really wasn't completely comfortable going that much longer, because he doesn't specialize in that (totally understandable.) I also see a lung specialist who specializes in mycoP, because I do appear to have some permanent damage. I don't want to scare you, but you really do need to act on this if there is mycoP. It is also highly contageous, so there's another reason to really get on the treatment of it. To do it right, you have to treat it long, hard, and aggressively. And, yes, mycoP could very well be, and most like is at least, part of the cause of your child's symptoms.

Link to comment
Share on other sites

I have a question. When my daughter first had a sudden onset of symptoms in october she was tested for mycoplasma. It said normal was under 770. Her numbers were 456. Is this something alarming do you think? Her pedi called it a negative but how is it really negative of there are some numbers?

 

 

456 is a negative number (mine, for instance was 1750, which is clearly positive, and I was very symptomatic.)

 

OK, back to the rest of the thread. MycoP is an atypical pneumonia (basically, walking pneumonia.) It very much causes rages and other symptoms that you are seeing. As a previous response noted, not all abx works on it; typically azithromycin and biaxin are the drugs of choice. That being said, it is extremely important that you treat mycoP completely and aggressively. I had it for probably at least 3 years (at least that's how long I was symptomatic.) We didn't know that it was mycoP, but when my asthma would get bad enough, I would beg the doc for azith, and I'd get 1 or maybe 2 z-packs. The asthma would go away, but kept coming back, AND I had the dry cough, AND I had a pain in a specific spot on the right side of my chest. This was all mycoP. Long story short, it was only when Dr. B. was testing me and my DH for mycoP and strep (he does that in case we are the ones causing the kids to be sick), that's how I finally found out it was mycoP.

 

It has now been a year that I am treating this. I see a LLMD (because it turns out I also have lyme, and because mycoP can be opportunistic in lyme...it can be a co-infection of lyme.) Dr. B. started me on 1 month of azith, but really wasn't completely comfortable going that much longer, because he doesn't specialize in that (totally understandable.) I also see a lung specialist who specializes in mycoP, because I do appear to have some permanent damage. I don't want to scare you, but you really do need to act on this if there is mycoP. It is also highly contageous, so there's another reason to really get on the treatment of it. To do it right, you have to treat it long, hard, and aggressively. And, yes, mycoP could very well be, and most like is at least, part of the cause of your child's symptoms.

Link to comment
Share on other sites

There are two test for mycoplasma - IgG and IgM. If IgM is over 700(ish) you most probably have an ACTIVE infection. If IgM is negative (under 700) and IgG is over 700 - then you probably had mycoplasma and have recovered and make the antibody to it.

 

There are no studies that I have found that conclusively tell you if a very high IgG means anything in the absense of a positve IgM. Some doctors will say it just meant that you had a very strong response when you had mycoplasma, some will say that it indicates you have a chronic infection (you can have no "typical" symptoms - although many will report a long lasting dry cough as only symptom).

 

However, I have also read that most adults don't make the IgM if they had mycoplamsa before - and I dont' htink there have been any studies on kids for this. So, if you had myco P two years ago, and recovered, and you get it today - there is a very good chance you will not make IgM - so you won't test positive using the titer test.

 

Regardless - you can have pandas. You do not need any active infection to have pandas. The infection triggers the immune system - which casues pandas. Strep, myco P and lyme are fairly well accepted as being triggers.

 

Once triggered, you can get a common cold and your immune system will send out the anti-neuronal antibodies that attack the brain (that are very high in our kids). For some reason, once triggered, our kid create an over abundance of these nasty buggers.

 

Your need to make sure all the infections your kid might have are tested for and eliminated. The best way to see if mycoplasma is chronic or getting better - is to retest your child after a good long course of antibiotics and no physical symptoms for 3-6 months. If the IgG is the same or lower, they probably don't have an infection. If it is climbing, they probably do.

Link to comment
Share on other sites

Allow me to correct some bad misconceptions about the condition (I do not want to use PANDAS ir PITANDS or even PANS because it is not limited to Pediatric, so as to say children)

and I am tired of

(1) Based on my Sandra's (got ill at 15.5 now 21) experience,

- Mycoplasma Pneomoniae causes exactly this condition

- IgG does not mean an old infection that does not need treatment. If symptoms are present it has to be treated and suitable long time antibiotics is the right treatment.

we know exactly when she had it but did not know what it was wheb she had it - thus it can very well be that your child's cough is no croup ut simply an on going chronic MycoP!

Sandra's IgG post infection in 2005 was some 65 (limit is 35 in our lab).

from then on it kept rising and reached at the peak more than 200. It always reacted to abx, the first steroid and IVIG treatments. It always went back up and kept rising when not treated.

When we started long term Azithromucin 500/day it was over 200 and the symptoms horrendous. After starting she started getting slowly better, IgG went 100 down in the first 3 months and after another 3 down to 39. It can still rise when we try to lower the dose or when there is an infection (and symptoms rise with it).

3. Sandra never had Strep of any sort and no one of us tested posiitive either.

(4) I had MycoP a year before Sandra got ill and the medical documents I saw this autumn do indicate the kids had a slight cough but the doctor thought nothing of it.

(5) Hubby tested over 100 IgG for MycoP and we saw strange symptoms of weariness. 1 month Azith had a good effect.

(6) For the past 3 years on top of Sandra, our older girl (24) had several months a year of sinus infection (Sandra had exactly the same symptoms but they were gone once we started the long term abx), on going below 38C temp, weariness, complaining her head was not clear and she really had difficulties with her university studies and lost some courses.

she kept testing negative to Mycoplasma Pneomoniae!

Took some real fighting with unbelieving doctors to finally have one who was on call here only for the weekend to think this may be immune related. Then I did some more fighting and had her referred to the infectious disease clinic at the central hospital, but it took them months to invite her and in the meantime I managed to convince one doctor who is more interested in Sandra's condition then others to read an article on the immune modulation properties of Azithromycin. He agreed we could try and we had a prescription for 3 months. Took exactly 1 month on Azith to get her back on her feet and it has so far not returned, even when we had a bad wave of MycoP in Finland late this autumn and I had a disturbing cough, like a hair in my throat, which after 3 weeks this same interested GP decided to treat with 6 days on Azith... Sharon did not get it again, I got well. Conclusion? It may well be MycoPlasma even when lab tests are negative and IgG tells you the bacteria is hiding but is certainly active, only not very much so. It is simply waiting for a chance to get back to higher level of activity when the conditions are right for it.

(7) Expressions like "PANDAS like symptoms" - they are not correct. Pandas is not more valid than PITANDS or PANS and I would remove the P altogether.

 

Ask your pediatrician to try your kid on an appropriate dose on Mycoplasma Pneomoniae suitable abx for long enough and see what that does.

I still think IVIG could help on top of that. Saw what it did to Sandra but we cannot get it any longer "thanks" to the way the Finnish health care system functions.

Link to comment
Share on other sites

I found out I have high IgG through testing after our DS was diagnosed w/ PANDAS. I was diagnosed w/ rheumatoid arthritis 14yrs ago. Had pain and stiffness, mostly in my hands that remitted after starting on plaquenil. All these yrs, I took plaquenil and it kept the symptoms in check. This summer, I decided to see another dr about my RA after I could no longer take plaquenil. He thinks I have never had RA but my symptoms are due to chronic mycoplasma infection. I am taking minocycline long term to try and get rid of the mycoP. Myco P can cause all kinds of symptoms.

Link to comment
Share on other sites

Tpotter,

Now that I read your post... We see Dr. B next week for the first time. Does he typically test the whole family? We have a 2 year old and a 5 month old. We were going to leave our 2 year old home because of the 8 hour travel time, but am now wonderinf if I should bring him....

 

 

 

Dr B gives you a script for bloodwork. Almost always he has you do it elsewhere. In our case we has our blood and our youngest's blood drawn at LabCorp and the results ent to him. We do now however have our DAN draw all bloods for our two kids with PANDAS.

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...