Jump to content
ACN Latitudes Forums

Mycoplasma Pneomoniae IGG markedly down following azith


Recommended Posts

Just wanted to tell that following 500 mg Azith a day starting of mid January 2010 Sandra's Mycoplasma Pneomoniae IGG rate , which was close to 200 back in January this year was tested last month and was down to 39! Symptoms too have changed dramatically. Chorea is gone and hair pulling once again over but some compulsive behaviour is still badly present (she soes not walk unless holding my hand or a yarn tied to a real heavy object) and concentration is not at best.

I am not sure if what we are seeing will take us back to what we saw way back in autumn 2005 after the first antibiotics and Prednisone, which got her symptom free for an entire year (until the next round started following a respiratory infection) and to the 4-5 months of almost no symptoms at all in Spring - autumn 2007 following IVIG, but I know that the antibiotics is working.

Related to this Azith long term course we tested 3 times, once in early January 2010 (score was ca 200), once in March 2010 it was down to ca 140 and now in June it was down to 39.

We were hoping to restart IVIG (after 2.5 years of no treatment) in April but the head of infectious diseases in our district hospital decided to block the initiative of his subordinate and as no Finnish specialist we know was willing to contact the known foreign specialists who greed and promised to help the process although no Finnish doctor but our GP (former school doctor and a close friend by now) knows anything about PITAND but for the selective articles some bothered to read.

 

We hope we re at a breakthrough point. We so much hope for a Sammy-like result that will take our 20 years old back to normal life, school, university and a great future...

 

One thing though, I would also wish that we all would remember always that PITAND and PANDAS has many faces and many sufferers and that none of us should exclude other causes but those which affected our own children and other symptoms but those presented by our own children and other treatments but those which our children receive and do or do not benefit from.

For those who wonder, I feel strongly about the pro Strep party which excludes Mycoplasma issues en block. They harm Sandra's case and her chance to proper treatment and recovery.

Link to comment
Share on other sites

Its so wonderful to hear your good news!

 

 

For those who wonder, I feel strongly about the pro Strep party which excludes Mycoplasma issues en block. They harm Sandra's case and her chance to proper treatment and recovery.

 

I hope you don't feel like you've been subjected to that on this board! My daughter does have the positive strep connection, but I'm not at all certain that strep is the totality of her problems. I've approached her pediatrician about checking for myco and lyme. He says that with the abx that she's been on they would likely turn out neg. But, looking back on treatment he's done for "strep" I think he's had it in the back of his mind to treat in a way that would take care of not only the strep, but any other possible boogey monsters that may have something to do with her presentation. Honestly, it has been hard enough to get specialists to help based on the known strep issue- they think we're crazy enough already. If we started throwing a bunch of other controversial possibilities in there, I think we'd be dismissed entirely. So, I guess I'm kind of blessed to have the strep issue and a pediatrician who will go to bat for us based on that. At the same time, I have a lot of empathy for those whose issues have other pathogens at the root.

Link to comment
Share on other sites

I have been thinking about you alot lately.....

i am glad positive things are happening....!!!!!!!!

 

So your ds has been on high dose abx for 6 months now?

how long did it take to see the break through....?

I remember the conversation in April about iivig approval and then refusal..

were you seeing any hope/break through at that point....4 months of abx...or maybe the hope of break through.

or did it really come about just recently...so it took 5-6 months of abx to see the light.....

it is sad it takes that long....BUT, it would be encouraging to those of us who have only done a month here and there..or a couple months and didn't see much..

 

Thanks' Bat-S

Link to comment
Share on other sites

Her condition in January was appalling. She was totally bedridden and did nt function independently at all, no communication but for the screams and crying.

Once we started abx it tooks some weeks to get her to come out of bed and cooperate. Each step took hours, but there were steps! so we were elated.

In March it was obvious that the direction was right as not only IGG levels were going clearly down but her own view of the situation was getting more positive and cooperative and she was walking indoors with the aid of the yarn (gives her confidence, I suppose, as this was my invention way back when I had to walk her by the hand all the time. A couple of years ago she managed to let go of the yarn and walked by herself but did not dare getting more than some 300 m away from outr yard, later on there was a downhimm and no walking and then the yarn was back in use but not independent waling thereafter.

The improvement on abx has been slow in the past 6 months and had its ups and downs but the net result has been positive so we did not mind the downs and did not get as afraid by them as we did in former years.

When IVIG was denied it was a horrible blow for all of us and we still believe that if we could get her on it she will improve still faster. Will it hold, is hard to say, as it did come back several times, each of them following resp. infections, but Marjaana and I feel that it is worth trying as we know she can take IVIG well and there is no high intervension risk as in PEX. No idea if we ever manage to get a Finnish specialist to communicate with US experienced ones to get her the treatment. I mean to say, our problem now is less the PITAND (not that we like it or what it has done to her and our life, but we think that if nothing else, Sandra will manage to go the Sammy way and get well in the end, no matter how long it will take or how many times we will need to go downhill on the way to get to the desired result) but the stubborness of the Finnish specialists and their short-sightedness and limitations of thinking and lack of courage, and for those we know no medication or treatment. Medical specialists who are not concerned with the well ebing of their patient and her future are not worth of their education and position in society. Unlike the US, the Finnish system does not offer a mobility between medical specialists within centers and between centers... and with Sandra's condition no insurance company will give her private insurance - and then those spcialists available privately are exactlyt he same ones you get to see through the public system and the medical culture here is not one of a second opinion, open and multidisciplinary consultation and cooperation or active communication with the patient, so that our chance always depends on finding the single positive person thorugh fight and struggle. The neurology in the disctric hospital got out of the game from the start as for them this was either Tourette's or mental and nothing else could be ever considered. No discussions, no interest. The leading person at neurology in the larger Helsinki and its university hospital thought this was a quicky - and once he realised this required on going treatment and included ups and downs and studying in detail he too gave up IVIG, even though he saw positive results on the way, declared her mental and washed his hands off us living Sandra alone and out in the cold. The same can be said about the neuro in Tampere university and the nifection people in Lahti, so we are alone, Sandra, our loyal former school GP and myself.

When she had the most recent downhill in later spring it was just when we all had some viral resp infection, so I think I can safely say it had some effet.

In June I managed to get a GP in the public system to send her blood for MycP IGG because I wanted to see what the abx was doing - and the surprise was great. In fact I had a hunch something was oging on, even though she was not walking on ehr own I could clearly see and so did the rest of the members of the family and Marjaana that her concentration was somewhat improved and choreatic movements vanishing. We did see other compulsive behaviors creeping in and she would still not watch any moving picture on TV or the Web, but her behavior is better, her logic is beter, and 2 days ago, after weeks of brainwashing her softly she finally picked the yarn and started moving on her own (hope this will not be followed by another retreat and will result in waling without any support soon).

 

I hope the experienced specialists could support tell Marjaana and me in deciding what to do re the abx - how long, what doseand so forth as we are really all alone here.

 

Maybe the fact that we were let down and betrayed so many a time brought us to the point of having no choice but trusting a very long term abx approach, so that for those who cannot see much improvement in a month, simply hang on and keep doing it, unless you have a proven better choice.

If we could still get her the missing immunomodulatory part of the treatment I believe that we will get her to university faster and she may still make it to medical or veterinary school in good time, and if we do nto get it, we will ahve to believe that what was good for Strep in Sammy's case will be good for Sandra in the Mycoplasma Pneomoniae case and keep pushing on.

 

 

 

 

I have been thinking about you alot lately.....

i am glad positive things are happening....!!!!!!!!

 

So your ds has been on high dose abx for 6 months now?

how long did it take to see the break through....?

I remember the conversation in April about iivig approval and then refusal..

were you seeing any hope/break through at that point....4 months of abx...or maybe the hope of break through.

or did it really come about just recently...so it took 5-6 months of abx to see the light.....

it is sad it takes that long....BUT, it would be encouraging to those of us who have only done a month here and there..or a couple months and didn't see much..

 

Thanks' Bat-S

Link to comment
Share on other sites

Just wanted to tell that following 500 mg Azith a day starting of mid January 2010 Sandra's Mycoplasma Pneomoniae IGG rate , which was close to 200 back in January this year was tested last month and was down to 39! Symptoms too have changed dramatically. Chorea is gone and hair pulling once again over but some compulsive behaviour is still badly present (she soes not walk unless holding my hand or a yarn tied to a real heavy object) and concentration is not at best.

I am not sure if what we are seeing will take us back to what we saw way back in autumn 2005 after the first antibiotics and Prednisone, which got her symptom free for an entire year (until the next round started following a respiratory infection) and to the 4-5 months of almost no symptoms at all in Spring - autumn 2007 following IVIG, but I know that the antibiotics is working.

Related to this Azith long term course we tested 3 times, once in early January 2010 (score was ca 200), once in March 2010 it was down to ca 140 and now in June it was down to 39.

We were hoping to restart IVIG (after 2.5 years of no treatment) in April but the head of infectious diseases in our district hospital decided to block the initiative of his subordinate and as no Finnish specialist we know was willing to contact the known foreign specialists who greed and promised to help the process although no Finnish doctor but our GP (former school doctor and a close friend by now) knows anything about PITAND but for the selective articles some bothered to read.

 

We hope we re at a breakthrough point. We so much hope for a Sammy-like result that will take our 20 years old back to normal life, school, university and a great future...

 

One thing though, I would also wish that we all would remember always that PITAND and PANDAS has many faces and many sufferers and that none of us should exclude other causes but those which affected our own children and other symptoms but those presented by our own children and other treatments but those which our children receive and do or do not benefit from.

For those who wonder, I feel strongly about the pro Strep party which excludes Mycoplasma issues en block. They harm Sandra's case and her chance to proper treatment and recovery.

May I ask did you treat solely based on IgG? Did your daughter have any symtoms (besides PANDAS stuff)?

My son's IgG is over 300 right now. Docs don't seem to think much of it here... He is doing better overall since the start of our PANDAS journey a year ago, but not at 100% yet and I wonder is this mycoplasma thing the reason. Also, how much does your daughter weigh? I do have a script from him for Azith 250mg but I am not sure it's strong enough for an 80-lb boy. When I tried to switch from Augmentin he really starting sliding back, but now I'm thinking it might just have been herxing? Did you notice and increase in symptoms as you started? Thanks and so happy your daughter is doing well :)

 

Isabel

Link to comment
Share on other sites

Sandra is 20.5 years old. She got ill at 15

She lost some 10 Kg in these years and is now some 53 Kg.

Sandra was very normal and healthy until in 2005 Sandra had A influenza virus and there after pneomonia caused by MycoP. Symptoms of PITAND started some weeks thereafter. Coughing went on for months. When a friend who is a leading immunoneurologist in Israel suggested PANDAS MArjaana sent tests in Finland and we found out Sandra had Influenza A and Mycoplasma Pneumoniae - she was treated with a short course of Azith and was almost totally OK but we still did a short course of Prednisone - after these she was 100% OK for a year.

PITAND symptoms returned after a resp. infection in autumn 2006. This time short courses of abx and pred did not yield and longer pred did not help either. After a struggle we got her on IVIG in spring 2007 (2mg per 1kg) and the reaction was fantastic. We kept doing maintenance IVIG and the no symptoms period was 4-5 months until the schedule got destructed by administrative issues, she got a resp infection, symptoms returned and the treatuing neurologist got enough of the problem. We tried symptomtic medication for movement issues and got her real ill (Risperdal), so we stopped and tried to get sb to help until in autumn 2009 we read Sammy's story, tried to get Sandra again on IVIG and as nothing worked and the situation was terrible, in January 2010 Marjaana prescribed 500mg/day Azith, which we have been doing ever since.

 

So - no other symptoms besides PITAND in her health history

IVIG done way back in May 2007, maintenance dose in June and July, nothing in August, maintenance in repeatred IVIG in OCtober and maintenance in november and December as wellas IV steroids. good reaction but treatment stopped. Neurologist decided it was mental (we still think he was mental to think so).

 

Sandra's IgG kept on rising since spring 2005 and went down after treatments, then it rocketed to 200 last December (matched her terrible condition) and since we started Azith in January kept going down (we tested in Dec 2009, MArch 2010 and June 2010).

 

There is sth on dosage on Azith on PAndas Central pages - worth checking what Dr T's opinion is about this. tHink he has the experience.

 

 

 

 

 

 

 

Just wanted to tell that following 500 mg Azith a day starting of mid January 2010 Sandra's Mycoplasma Pneomoniae IGG rate , which was close to 200 back in January this year was tested last month and was down to 39! Symptoms too have changed dramatically. Chorea is gone and hair pulling once again over but some compulsive behaviour is still badly present (she soes not walk unless holding my hand or a yarn tied to a real heavy object) and concentration is not at best.

I am not sure if what we are seeing will take us back to what we saw way back in autumn 2005 after the first antibiotics and Prednisone, which got her symptom free for an entire year (until the next round started following a respiratory infection) and to the 4-5 months of almost no symptoms at all in Spring - autumn 2007 following IVIG, but I know that the antibiotics is working.

Related to this Azith long term course we tested 3 times, once in early January 2010 (score was ca 200), once in March 2010 it was down to ca 140 and now in June it was down to 39.

We were hoping to restart IVIG (after 2.5 years of no treatment) in April but the head of infectious diseases in our district hospital decided to block the initiative of his subordinate and as no Finnish specialist we know was willing to contact the known foreign specialists who greed and promised to help the process although no Finnish doctor but our GP (former school doctor and a close friend by now) knows anything about PITAND but for the selective articles some bothered to read.

 

We hope we re at a breakthrough point. We so much hope for a Sammy-like result that will take our 20 years old back to normal life, school, university and a great future...

 

One thing though, I would also wish that we all would remember always that PITAND and PANDAS has many faces and many sufferers and that none of us should exclude other causes but those which affected our own children and other symptoms but those presented by our own children and other treatments but those which our children receive and do or do not benefit from.

For those who wonder, I feel strongly about the pro Strep party which excludes Mycoplasma issues en block. They harm Sandra's case and her chance to proper treatment and recovery.

May I ask did you treat solely based on IgG? Did your daughter have any symtoms (besides PANDAS stuff)?

My son's IgG is over 300 right now. Docs don't seem to think much of it here... He is doing better overall since the start of our PANDAS journey a year ago, but not at 100% yet and I wonder is this mycoplasma thing the reason. Also, how much does your daughter weigh? I do have a script from him for Azith 250mg but I am not sure it's strong enough for an 80-lb boy. When I tried to switch from Augmentin he really starting sliding back, but now I'm thinking it might just have been herxing? Did you notice and increase in symptoms as you started? Thanks and so happy your daughter is doing well :)

 

Isabel

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...