Need help with Test results for Myco. P

[madhu]

Hi,

We just got the results for my son for Myco. P

 

IgG is high 501 Ref ( 0 - 99)

IgM is low < 770 Ref ( 0 - 769)

 

 

Does this mean we still have to treat Myco. P or that it was a past infection.

How did everyone dealing with Myco.P get the results? Did you also have high IgM values to treat it?

 

Thanks,

Madhu.

[Fixit]

Hi,

We just got the results for my son for Myco. P

 

IgG is high 501 Ref ( 0 - 99)

IgM is low < 770 Ref ( 0 - 769)

 

 

Does this mean we still have to treat Myco. P or that it was a past infection.

How did everyone dealing with Myco.P get the results? Did you also have high IgM values to treat it?

 

Thanks,

Madhu.

 

my ds igg was 631 ....no or littel igm

i too would be suspicious if igg was 10 point out of range,, but that seems high to me, more than a past infection...i would think it would be lower dependsing on how past

accroding to info...once you get mp one time...you may never get igm readings again...so you have to relie on rising igg.....and the question would also be, how much longer and how much higher do you want to numbers to go up before you treat....i think main stream would say wait a month???

[madhu]

So is Dr T recommending treatment for Myco even though the IgM values are normal?

Madhu.

[tired mom]

Hi,

We just got the results for my son for Myco. P

 

IgG is high 501 Ref ( 0 - 99)

IgM is low < 770 Ref ( 0 - 769)

 

 

Does this mean we still have to treat Myco. P or that it was a past infection.

How did everyone dealing with Myco.P get the results? Did you also have high IgM values to treat it?

 

Thanks,

Madhu.

I am confused as you. My daughter's IgM were thousands out of range and high IgG and that is after having been positive 5 months ago.

[thereishope]

This was posted on here before...

 

"A positive result indicates prior exposure to Mycoplasma. A single positive IgG result may be present in the absence of any clinical symptoms as specific IgG antibodies may remain elevated long after initial infection. Recent or acute infection can only be documented by a positive Mycoplasma IgM result and/or a significant increase in the IgG value between sera drawn two to four weeks apart. Specific IgM antibodies may persist for several months after infection or be absent during reinfection."

[kcdc3]

I am a big fan of treating a high IgG even without a high IgM. My dd had only a positive IgG. We treated with Clarithromycin (generic for Biaxin) for 30 days. As of today, she is 95% better. Her OCD is minimal, no more panic attacks, no more exorcist episodes. She has suffered for the past 4 years and no one could help. We tried all kinds of antibiotics, SSRI's, natural remedies, CBT/ERP- nothing worked. However, 30 days of Biaxin got her to 95%. I have become so accustomed to having a raging, out of control PANDAS or PITANDS, whatever you want to call it, child that I keep thinking I'm dreaming and need to wake up. Hoping we don't relapse. Treat IgG for sure.

[Bat_Sheva_Myllys]

I am a big fan of treating a high IgG even without a high IgM. My dd had only a positive IgG. We treated with Clarithromycin (generic for Biaxin) for 30 days. As of today, she is 95% better. Her OCD is minimal, no more panic attacks, no more exorcist episodes. She has suffered for the past 4 years and no one could help. We tried all kinds of antibiotics, SSRI's, natural remedies, CBT/ERP- nothing worked. However, 30 days of Biaxin got her to 95%. I have become so accustomed to having a raging, out of control PANDAS or PITANDS, whatever you want to call it, child that I keep thinking I'm dreaming and need to wake up. Hoping we don't relapse. Treat IgG for sure.

 

Sandra (20) IgG high for 5 years post known Mycop infection, IgG was 187 (pos limit 33) in December 2009. She started Azith 500mg/day in mid January 2010 and last week test was 50% down, severe PITAND symptoms are getting better all that time, not as much as the reduction in IgG but very promising. Still cannot walk without her "yarn" connection, but movement attacks are much farther between, shorter and less intensive. She cannot watch moving pictures but can read some and do some handicraft, and the best still, 3 days ago she started setting her alarm clock. It worked well only once but it is the intention which cunts.

We were told ladt week that we could start long term IVIG (her last one was most successful back in spring-summer 2007 but stopped for no valid medical grounds and she deteriorated badly thereafter), but then the head of the clinic put a stop to the plan for cost reasons (not the US system, it is illegal and there is no question of insurance involved). War starts again on coming Tuesday!

[thereishope]

I'm happy treatment will start again. Please keep us updated on her.

 

We were told ladt week that we could start long term IVIG

[momaine]

I am a big fan of treating a high IgG even without a high IgM. My dd had only a positive IgG. We treated with Clarithromycin (generic for Biaxin) for 30 days. As of today, she is 95% better. Her OCD is minimal, no more panic attacks, no more exorcist episodes. She has suffered for the past 4 years and no one could help. We tried all kinds of antibiotics, SSRI's, natural remedies, CBT/ERP- nothing worked. However, 30 days of Biaxin got her to 95%. I have become so accustomed to having a raging, out of control PANDAS or PITANDS, whatever you want to call it, child that I keep thinking I'm dreaming and need to wake up. Hoping we don't relapse. Treat IgG for sure.

 

Wow, so glad to read of your dd's good news. Ours, not so good. The biaxin/prednisone has helped a lot but not sure which has helped more and things seem to have stopped movoing forward again. Yesterday she got her Biaxin/Advil later in the day than normal because she slept late then forgot it once she fially ate breakfast and things REALLy fell apart last night. GRRRRRRRRRRr! Wish this long journey were already over.

Angela

[Fixit]

That is so great!!!!!! Please keep sharing....

and for those of you who may not have noticed her daughter is 20...

 

Bet..how many ivig's did she get in the past and how frequent?

and what is you new plan..ie dose, how often...and if you have any idea of duration...6 monhts ..off,on.?

 

 

I am a big fan of treating a high IgG even without a high IgM. My dd had only a positive IgG. We treated with Clarithromycin (generic for Biaxin) for 30 days. As of today, she is 95% better. Her OCD is minimal, no more panic attacks, no more exorcist episodes. She has suffered for the past 4 years and no one could help. We tried all kinds of antibiotics, SSRI's, natural remedies, CBT/ERP- nothing worked. However, 30 days of Biaxin got her to 95%. I have become so accustomed to having a raging, out of control PANDAS or PITANDS, whatever you want to call it, child that I keep thinking I'm dreaming and need to wake up. Hoping we don't relapse. Treat IgG for sure.

 

Sandra (20) IgG high for 5 years post known Mycop infection, IgG was 187 (pos limit 33) in December 2009. She started Azith 500mg/day in mid January 2010 and last week test was 50% down, severe PITAND symptoms are getting better all that time, not as much as the reduction in IgG but very promising. Still cannot walk without her "yarn" connection, but movement attacks are much farther between, shorter and less intensive. She cannot watch moving pictures but can read some and do some handicraft, and the best still, 3 days ago she started setting her alarm clock. It worked well only once but it is the intention which cunts.

We were told ladt week that we could start long term IVIG (her last one was most successful back in spring-summer 2007 but stopped for no valid medical grounds and she deteriorated badly thereafter), but then the head of the clinic put a stop to the plan for cost reasons (not the US system, it is illegal and there is no question of insurance involved). War starts again on coming Tuesday!

[Bat_Sheva_Myllys]

I'm happy treatment will start again. Please keep us updated on her.

 

We were told ladt week that we could start long term IVIG

 

 

Sorry for the BOLD - I am not shouting at you folks, only stressing a point... I am mad at this medical system of ours and intend to fight them to the very end.

The infection specialist (who got no actual PITAND or PANDAS experience but some active brain cells and a human hear) wanted to start the treatment this coming week and go on long term but THE HEAD OF THE CLINIC PUT A STOP TO THE PLAN BASED ON COST REASONS (not the US system, it is illegal and there is no question of insurance involved). War starts again on coming Tuesday! SO AT THE MOMENT WE AHVE NO IVIG. THE WAR BEGINS IN 2 DAYS. Will keep you posted.

[Bat_Sheva_Myllys]

That is so great!!!!!! Please keep sharing....

and for those of you who may not have noticed her daughter is 20...

 

Bet..how many ivig's did she get in the past and how frequent?

and what is you new plan..ie dose, how often...and if you have any idea of duration...6 monhts ..off,on.?

 

Spring 2005 Pneomonia by Mycoplasma Pneomoniae as a side effect of Influenza A. In autumn 2005 Sandra got a short course of Clarithromycin, got 80-90% well and a couple of weeks thereafter 7 days 60 mg Prednisone and got totally well for 1 whole year.

Resp infection in autumn 2006, no help from short course Clarith or Prednisone, no help from long (3 months) PRednisone.

Spring 2007 IVIG (Nanogam - Finnish donnors) 2 gr/Kg given in 5 days. Grand results, almost no symptoms. Followed by 2 monthly maintenance and 2 month gap (admin mess).

Resp infection in August 2007 and return of sympt. after a fight she got a 2nd round of 2grXKg body mass and in Dec 2007 3 days 500mg Medrol (steroid) IV. Relatively good effect but Dr responsible got enough of the story as no miraculous recovery took place and left her.

Tried Risperdal and got extremely sick. Stopped in 2008. From End 2007 till January 2010 no PITAND/PANDAS treatment. Condition was getting worse and worse.

After 2.5 years, following inspiration by Sammy's story and being absolutley sure her Mycop IGg kept high and went still higher, my friend the GP and I decided we had nothing to lose and started Azithromax 500mg/day, Lactobacillus GG, Omega 3, 200mg Ibuprofen and yesterday started NAC.

My friend the Israeli immunoneurologist who diagnosed and treated her way back in 2005-2007 via my GM friend Marjaana is now of the opinion that she should undergo P-pheresis before IVIG. the problem is that in the past 5 years during which we ahve been fighting to have Sandra treated for her illness and not for the long list of imaginary diagnoses local doctors have come to, not a single other case has been found or treated, in fact she is the one and only in the entire country.

In the end of last year a junior infection spceialist in the internal med clinic in our area hospital got interested in her, was the first to read all the mistakes and maltreatment "between the lines" of her patient documents and was ready to go for IVIG. He has no experience with such cases and wanted some help from specialists so I got a mail ring of Dr T, Dr K, Dr Pavone, Dr Milo and Dr Kessel who were all very helpful. He still wanted some local spceialist behind him and contacted a neurologist in the Univ hospital, only that one did not read her patient docujemnts through the "right specs" and hardly read anything on PITAND and sent a 2 page assessment and recomendations that made Marjaana (the GP) and myself jump. The guy wanted to see brain inflamation to fo for pheresis. I said thanks, but no thanks, and we decided to go happily for IVIG. 24 of March we left the iInternal Infection specialist office happy like birds. We were told IVIG should start after right Easter, same week Fr he still called me to check arrangements but then this week's Wednesday he sent a mail telling he had to speak to his boss about the treatment because it is very expensive and that his boss put a stop to it. Marjaana called the head of the clinic and heard a made up story for grounds that never existed. Then the infection spec called me Friday and got a "cold shower" with a good piece of my mind on his boss and that I thought he at least was a doctor who saw medicine as a mission, mentioned to him that way back on 1 May 2007 the head of the hospital said we could have IVIG done in another dept if we did not trust their neurology (which we really do not after the experience of the first 2.5 years) and that it was done in Helsinki because they would not let the Helsinki prof we saw privately guide the treatment, which meant that the stories the head of the Intern. clinic told Marjaana had no head or tail and that he was acting unethically, immorally and illegally, and ended with "Et tu Brutus"... he then said that his boss did not mean the treatment could not be done in Lahti... and that he was going to call me again on Tuesday. Seems like he never heard wht his boss told Marjaana, that the internal med clinic did not perform treatment for infection patients but sent them back to the clinic that referred them to the internal, only Sandra does not ahve sucha thing, which means NO TREATMENT as far as the opinion of the head of the Internal Clinic goes... For us this means back to aquare one and to the battle gear. Will keep you posted.

[Fixit]

Bet....I am so sorry!!!!!

I wish i lived back up in pa or nj and you could stay with me and see doc T .....

Funds are always an issue...do you have family in other countries that may have someone.....

There are a a few papers on doc t's website and i think they come out of turkey and germany

You may have to do more out of the box than you already do...

God Bless!!!

 

 

That is so great!!!!!! Please keep sharing....

and for those of you who may not have noticed her daughter is 20...

 

Bet..how many ivig's did she get in the past and how frequent?

and what is you new plan..ie dose, how often...and if you have any idea of duration...6 monhts ..off,on.?

 

Spring 2005 Pneomonia by Mycoplasma Pneomoniae as a side effect of Influenza A. In autumn 2005 Sandra got a short course of Clarithromycin, got 80-90% well and a couple of weeks thereafter 7 days 60 mg Prednisone and got totally well for 1 whole year.

Resp infection in autumn 2006, no help from short course Clarith or Prednisone, no help from long (3 months) PRednisone.

Spring 2007 IVIG (Nanogam - Finnish donnors) 2 gr/Kg given in 5 days. Grand results, almost no symptoms. Followed by 2 monthly maintenance and 2 month gap (admin mess).

Resp infection in August 2007 and return of sympt. after a fight she got a 2nd round of 2grXKg body mass and in Dec 2007 3 days 500mg Medrol (steroid) IV. Relatively good effect but Dr responsible got enough of the story as no miraculous recovery took place and left her.

Tried Risperdal and got extremely sick. Stopped in 2008. From End 2007 till January 2010 no PITAND/PANDAS treatment. Condition was getting worse and worse.

After 2.5 years, following inspiration by Sammy's story and being absolutley sure her Mycop IGg kept high and went still higher, my friend the GP and I decided we had nothing to lose and started Azithromax 500mg/day, Lactobacillus GG, Omega 3, 200mg Ibuprofen and yesterday started NAC.

My friend the Israeli immunoneurologist who diagnosed and treated her way back in 2005-2007 via my GM friend Marjaana is now of the opinion that she should undergo P-pheresis before IVIG. the problem is that in the past 5 years during which we ahve been fighting to have Sandra treated for her illness and not for the long list of imaginary diagnoses local doctors have come to, not a single other case has been found or treated, in fact she is the one and only in the entire country.

In the end of last year a junior infection spceialist in the internal med clinic in our area hospital got interested in her, was the first to read all the mistakes and maltreatment "between the lines" of her patient documents and was ready to go for IVIG. He has no experience with such cases and wanted some help from specialists so I got a mail ring of Dr T, Dr K, Dr Pavone, Dr Milo and Dr Kessel who were all very helpful. He still wanted some local spceialist behind him and contacted a neurologist in the Univ hospital, only that one did not read her patient docujemnts through the "right specs" and hardly read anything on PITAND and sent a 2 page assessment and recomendations that made Marjaana (the GP) and myself jump. The guy wanted to see brain inflamation to fo for pheresis. I said thanks, but no thanks, and we decided to go happily for IVIG. 24 of March we left the iInternal Infection specialist office happy like birds. We were told IVIG should start after right Easter, same week Fr he still called me to check arrangements but then this week's Wednesday he sent a mail telling he had to speak to his boss about the treatment because it is very expensive and that his boss put a stop to it. Marjaana called the head of the clinic and heard a made up story for grounds that never existed. Then the infection spec called me Friday and got a "cold shower" with a good piece of my mind on his boss and that I thought he at least was a doctor who saw medicine as a mission, mentioned to him that way back on 1 May 2007 the head of the hospital said we could have IVIG done in another dept if we did not trust their neurology (which we really do not after the experience of the first 2.5 years) and that it was done in Helsinki because they would not let the Helsinki prof we saw privately guide the treatment, which meant that the stories the head of the Intern. clinic told Marjaana had no head or tail and that he was acting unethically, immorally and illegally, and ended with "Et tu Brutus"... he then said that his boss did not mean the treatment could not be done in Lahti... and that he was going to call me again on Tuesday. Seems like he never heard wht his boss told Marjaana, that the internal med clinic did not perform treatment for infection patients but sent them back to the clinic that referred them to the internal, only Sandra does not ahve sucha thing, which means NO TREATMENT as far as the opinion of the head of the Internal Clinic goes... For us this means back to aquare one and to the battle gear. Will keep you posted.

[Joan Pandas Mom]

I had the same experience as you, kdcd3. We are only on our 2nd script for Clarithromycin, our first script ended 8 days ago, and Dr. T renewed it yesterday for round 2. My son is the best I have seen him in years. He had elevated IgG without elevated IgM too. I'm with you, treat elevated IgG even if IgM isn't elevated.

 

I am a big fan of treating a high IgG even without a high IgM. My dd had only a positive IgG. We treated with Clarithromycin (generic for Biaxin) for 30 days. As of today, she is 95% better. Her OCD is minimal, no more panic attacks, no more exorcist episodes. She has suffered for the past 4 years and no one could help. We tried all kinds of antibiotics, SSRI's, natural remedies, CBT/ERP- nothing worked. However, 30 days of Biaxin got her to 95%. I have become so accustomed to having a raging, out of control PANDAS or PITANDS, whatever you want to call it, child that I keep thinking I'm dreaming and need to wake up. Hoping we don't relapse. Treat IgG for sure.