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Myco P + kids


What was your child's timeline and symptoms?  

17 members have voted

  1. 1. Did they have symptoms of Myco P PRIOR to testing +? (ie. a cough)

    • Yes, they had symptoms of Myco P
      3
    • No, they did not have symptoms of Myco P
      5
  2. 2. Did they have a flare in PANDAS symptoms after starting antibiotics for Myco P?

    • Yes, they had a worsening of PANDAS symptoms
      5
    • No, their PANDAS symptoms remained the same or improved
      3
  3. 3. Did their PANDAS symptoms eventually improve after starting antibiotics for Myco P? If so, when?

    • Yes, they improved immediately
      1
    • Yes, they improved by day 3
      2
    • Yes, they improved by day 7
      2
    • No, they have not improved and we are passed day 7
      3
    • My child's symptoms have not improved yet and we are not up to day 3
      0


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What is the best way to be tested for mycoplasma pneumo? What are the specific tests?

 

Something is going on with my kids. They have been on Zith for over a year and were doing pretty well until they were heavily exposed to strep on several occasions. Now I don't know what is going on with them. If mycoplasma pneumo is even a remote possibility, I need to rule it out.

 

Thanks so much for any info!

 

Colleen

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My son had his first IVIG on September 1st and he improved to almost 95%. Then in December, we had "critters" from our dog in our house and my son developed a rash that looked like Bartonella. He then totally regressed. His next blood work showed positive for strep. His blood work also showed IGG positive for mycoplasma (greater than 5) and almost positive on the IGM (655). We recently did another big IVIG (4 weeks ago) and we switched antibiotics from Augmentin to Zithromycin.

 

So, my question is what is the best antibiotic for strep, bartonella and mycoplasma, with possibly a lyme co-infection?

 

Elizabeth

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My son had his first IVIG on September 1st and he improved to almost 95%. Then in December, we had "critters" from our dog in our house and my son developed a rash that looked like Bartonella. He then totally regressed. His next blood work showed positive for strep. His blood work also showed IGG positive for mycoplasma (greater than 5) and almost positive on the IGM (655). We recently did another big IVIG (4 weeks ago) and we switched antibiotics from Augmentin to Zithromycin.

 

So, my question is what is the best antibiotic for strep, bartonella and mycoplasma, with possibly a lyme co-infection?

 

Elizabeth

 

Omnicef has been working wonders for my PANDAS daughter who tested positive for lyme. She was on augmentin and zithromax prior to Omnicef with minimal improvement. We are negative for mycoplasma.

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Steroid was started 7 days before Biaxin XL. Last time the steroid burst took 13 days before we saw progress. This time the dose was higher. (40mg per day for 5 days vs. tapering 6 day dose beginning with 24mg and lessening 4mg per day)

 

Angela

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I did a 5 day burst of steroids in December and had a fever those five days and then about a week after I started to feel completely normal again which lasted for about six days. Then in January we decided to do another 5 day burst and decided to switch it to a month of steroids; 15 days 60mg twice daily and 15 day tapering. So far no antibiotics have worked for me and we are pursuing IVIG. I also have Mycoplasma Pneum. and and IgG 1 subclass deficiency.

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I'm just trying to see what the majority is experiencing for those who have kids who tested positive for Mycro P. I know some have done steroids too so if that is the case, please post that as well and when the steroid was taken. Thanks!

Vickie,

I answered your poll, but to be more specific - my daughter was treated with two rounds of Zithro in January, and her symptoms (both physical and PANDAS symptoms) did NOT subside. Though pneumonia went into high normal range, her mycoplasm IGG's were still at "5" mid February. We did one more round of Zithro, and it just didn't seem to work. She was still feeling under the weather. Missed ALOT of school in Jan - Feb. Once we started Biaxin, we saw both physical and PANDAS symptoms drastically improve within 7 days.

Thx.

Noelle

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Another question I would have liked to ask was for those who saw improvement...what antibiotic was your child on at time of improvement? It seems, and I may be wrong, but I'm going by posts only, that Biaxin or its generic is what the majority is on. I think most peds would give a child Zith for Myco P. For those who had success on Biaxin, did you try Zith first?

 

So, I still don't know if this is becoming a correct analogy...

I do not know if this is correct......Amoxicillin is to Zithromax for strep in PANDAS kids as Zithromax is to Biaxin for Myco P in PANDAS (or PITAND) kids?

 

Also, I want to find a quote someone had weeks ago about how with Myco, after subsequent infections one of the results may no longer rise?

 

Like you said, Colleen, I'm trying to figre out what tests we can suggest to people who are just going to their local doc for treatment instead of someone like Dr T. I want to try to give them guidance and I don't know what to say.

 

Then I worry about Biaxin and all this stomach upset. What is it doing to the stomach? Should a young child not be give Biaxin?

 

There's just all this attention about Myco P, but I just can't wrap my head around all of it right now. Maybe it's too soon in everyone's treatment to see similarities?

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Here's that quote I found....

 

http://www.latitudes.org/forums/index.php?showtopic=7061

 

"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."

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My ds recently tested positive for mycoplasma and my DAN doc said we had several choices... erythromycin, zithromycin and one other I can't think of. I mentioned biaxin (clarithromycin) since I had seen so many on this board who were already taking it for mycoplasma and he said sure... that one would be fine also. My ds hasn't had any stomach issues with it. He takes it with meals and I think his dosage is 'by the book' for his age (5). My ds was both IGM and IGG positive, thus he appears to have a chronic case. His cholesterol level was found to be low (too low). I found several articles online indicating that mycoplasma feeds on cholesterol. So, if your doc hasn't checked cholesterol level, this might be something to look at also. My doc only prescribed 14 days initially, but when I emailed him the link to the article someone posted on this site regarding mycoplasma manifesting tics (my son's primary issue), he agreed to extend abx for another 2 weeks.

 

We started the clarithromycin while awaiting other lab test results. (I decided to explore every major avenue I had seen on this board... PANDAS, lyme, yeast overgrowth, food intolerance, etc.) My ds had a known deer tick bite in May '08, so I had the lyme test done through IGeneX. I just found out on Friday that he is IGG positive for lyme. I now think the mycoplasma is a coinfection secondary to the lyme, and the neuro symptoms were likely triggered by the lyme. He was also found to have yeast overgrowth, probably due to being on abx many times in his 5 short years of life (ear infections, strep, URI).

 

I think my son's case (and many others on this board) shows how important it is to check into every possibility. By the way, my son's lyme results would be negative by CDC criteria since they exclude bands 31 and 34 on the western blot.... some of the most specific bands for lyme, from what I understand. Had I not done the test through IgeneX or another independent lab that reports bands 31 and 34, I may never have discovered the lyme. If lyme is even a remote possibility for anyone on this board, I encourage you to use an independent lab that will report these bands. We are now starting the journey of finding a lyme-literate doc to treat my son, and I am hopeful that we will see improvement once treatment is underway.

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Another question I would have liked to ask was for those who saw improvement...what antibiotic was your child on at time of improvement? It seems, and I may be wrong, but I'm going by posts only, that Biaxin or its generic is what the majority is on. I think most peds would give a child Zith for Myco P. For those who had success on Biaxin, did you try Zith first?

 

So, I still don't know if this is becoming a correct analogy...

I do not know if this is correct......Amoxicillin is to Zithromax for strep in PANDAS kids as Zithromax is to Biaxin for Myco P in PANDAS (or PITAND) kids?

 

Also, I want to find a quote someone had weeks ago about how with Myco, after subsequent infections one of the results may no longer rise?

 

Like you said, Colleen, I'm trying to figre out what tests we can suggest to people who are just going to their local doc for treatment instead of someone like Dr T. I want to try to give them guidance and I don't know what to say.

 

Then I worry about Biaxin and all this stomach upset. What is it doing to the stomach? Should a young child not be give Biaxin?

 

There's just all this attention about Myco P, but I just can't wrap my head around all of it right now. Maybe it's too soon in everyone's treatment to see similarities?

 

One thing i want to add is as i try to compare my DS to others posting immediat success on Biaxin...(and i ask why not us) i've notices a common thing that does not exist in my boy..

Most of the people(if not all) starting BX were already on some form of abx....though it may not have been the right one..it may have been a continual poke in the arm to Myco P and then once the BX came in with a punch it was able to knock it down..(also when dr t wrote about strep and recovery and being young vs 10, i feel like that was my exact story.. ....ds would make a pretty large turn i about 10 days and full recovery in 4 weeks)(my concern is the number of times my boy did get strep before the age of 8.... i am trying to hold on and be patient!!!

 

We have not been on any meds other than vit and min and omega for 10 months....as i look back at the cephalx we got in the beginnng 4/7-/417 (not enough and wrong drug)...he condition was much better at the onset, compared to now /though severe and sudden/ i would like to go to those days as things have declined as i'm assuming the myco p is taking over. And though the it says igm would be a positive with and igg of 631 on a scale that ends at 320......i would believe that would be considered markedly elevated... i would not want to wait a month with out doing anything to see what happens if it goes to 700 or see if goes down to 600(as i think it would be slow on myco p to go down,..jmho)

 

I would like to reiterat, that though ds has a great personality and he is 10 going on 13 his mood is somewhat less aggitated...says he's sleeping really good a couple nights this week,,,the last year he's not been sleeping well at all and complains of not sleeping and being tired...i don't know if i'm just grabbing at straws???

 

a question, DS says his eyes hurt yesterday and today, i gave him ibuprofren....it seems to subside after that ...anyone else have this???

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My ds recently tested positive for mycoplasma and my DAN doc said we had several choices... erythromycin, zithromycin and one other I can't think of. I mentioned biaxin (clarithromycin) since I had seen so many on this board who were already taking it for mycoplasma and he said sure... that one would be fine also. My ds hasn't had any stomach issues with it. He takes it with meals and I think his dosage is 'by the book' for his age (5). My ds was both IGM and IGG positive, thus he appears to have a chronic case. His cholesterol level was found to be low (too low). I found several articles online indicating that mycoplasma feeds on cholesterol. So, if your doc hasn't checked cholesterol level, this might be something to look at also. My doc only prescribed 14 days initially, but when I emailed him the link to the article someone posted on this site regarding mycoplasma manifesting tics (my son's primary issue), he agreed to extend abx for another 2 weeks.

 

We started the clarithromycin while awaiting other lab test results. (I decided to explore every major avenue I had seen on this board... PANDAS, lyme, yeast overgrowth, food intolerance, etc.) My ds had a known deer tick bite in May '08, so I had the lyme test done through IGeneX. I just found out on Friday that he is IGG positive for lyme. I now think the mycoplasma is a coinfection secondary to the lyme, and the neuro symptoms were likely triggered by the lyme. He was also found to have yeast overgrowth, probably due to being on abx many times in his 5 short years of life (ear infections, strep, URI).

 

I think my son's case (and many others on this board) shows how important it is to check into every possibility. By the way, my son's lyme results would be negative by CDC criteria since they exclude bands 31 and 34 on the western blot.... some of the most specific bands for lyme, from what I understand. Had I not done the test through IgeneX or another independent lab that reports bands 31 and 34, I may never have discovered the lyme. If lyme is even a remote possibility for anyone on this board, I encourage you to use an independent lab that will report these bands. We are now starting the journey of finding a lyme-literate doc to treat my son, and I am hopeful that we will see improvement once treatment is underway.

Good for you! I am sorry that your son has Lyme but at least you know what needs to be treated. Dr. Charles Ray Jones told me that all kids recover from Lyme with the right treatment eventually so hang in there. You should see huge improvements within months of beginning the lyme treatment. If you can find a lyme literate doctor who understands yeast issues (like an integrative physician) that would be great. There is a new book about lyme I just started to read that you may want to get. It is called "Insights into Lyme Disease Treatment" by Connie Strasheim.

lyme mom

lyme mom

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maybe you could add a couple of more questions

 

1) were you on a abx prior to starting starting biaxin

if yes 10days, 2 weeks, 1 month 2 months 3 months, 6months,longer

 

2)how long between onset of current episode and starting bx

 

3)current age of child >5, 5-7, 8-9, 10-12, 13-16, 17-19

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You're limited to the number of questions on each survey, but I will start an additional survey in a separate post. It's easier for me to see what the majoirty/minority is experiencing in "poll form". I can't do it now since I have to make lunch for the kids. If you want to do a new one, go ahead. If not, I'll do it later.

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