Please a little insight

[tired mom]

For everyone out there who has been dealing with myco.p can you please tell me what treatment you are doing. A quick update as to where I am now. In the fall my daughter tested positive for myco. No IgG or IgM done at that point only had a positive result. Treated it with Zithromax. In March we started seeing Dr. T who retested her levels and lets just say they were off the charts. My dd did a month of biaxin which was like a miracle drug. After 1 week with no abx she relapsed. Started again on biaxin and just got her bloodwork done again. Everything came back good except in the myco area. Again her levels are extremely high. What kills this infection???I asked her doctor if this was common for the levels to remain high for such a long time and she responded that this is not common and she wants her to remain on the biaxin and we will retest in another month. Is anyone else having a hard time treating this???

[coco]

Hi tired Mom - We, too, are on Biaxin for myco from Dr. T and it has been a big gun for my dd. We are in the third week of a 30 day. I also wonder if she will slip once we are done with it. We will go back to Azith once it's done and see what happens and also add minocycline for the strong possibility of Lymes as well for 30 days. I have my doubts about the minocycline, but Dr. Jones (pediatric lymes specialist) wants her to try it. What were your dds myco IgG/IgM numbers? Is Dr. T also weighing in? He's the one who really helped us out with the myco. I didn't think that it was great to be on Biaxin for a long period of time...hard on the liver?

[Santi]

For everyone out there who has been dealing with myco.p can you please tell me what treatment you are doing. A quick update as to where I am now. In the fall my daughter tested positive for myco. No IgG or IgM done at that point only had a positive result. Treated it with Zithromax. In March we started seeing Dr. T who retested her levels and lets just say they were off the charts. My dd did a month of biaxin which was like a miracle drug. After 1 week with no abx she relapsed. Started again on biaxin and just got her bloodwork done again. Everything came back good except in the myco area. Again her levels are extremely high. What kills this infection???I asked her doctor if this was common for the levels to remain high for such a long time and she responded that this is not common and she wants her to remain on the biaxin and we will retest in another month. Is anyone else having a hard time treating this???

 

My son tested positive for Myco P. Dr. K said it takes a long time to get rid of it. my son still tested positive after treatment with 500mg azith. Andrea

[coco]

Santi - what's "a long time" according to Dr. K? I don't mean to get too literal, but I am anxious to have her cleared of it, and I was under the impression from Dr. T that 30 days ought to do it.

[Iowadawn]

For everyone out there who has been dealing with myco.p can you please tell me what treatment you are doing. A quick update as to where I am now. In the fall my daughter tested positive for myco. No IgG or IgM done at that point only had a positive result. Treated it with Zithromax. In March we started seeing Dr. T who retested her levels and lets just say they were off the charts. My dd did a month of biaxin which was like a miracle drug. After 1 week with no abx she relapsed. Started again on biaxin and just got her bloodwork done again. Everything came back good except in the myco area. Again her levels are extremely high. What kills this infection???I asked her doctor if this was common for the levels to remain high for such a long time and she responded that this is not common and she wants her to remain on the biaxin and we will retest in another month. Is anyone else having a hard time treating this???

 

My son tested positive for Myco P. Dr. K said it takes a long time to get rid of it. my son still tested positive after treatment with 500mg azith. Andrea

 

 

Andrea-

By testing positive, was that IgM. IgG or both positive. Did Dr. K treat it? Did you have IVIG with him? I am curious what Dr. K is doing with the positive cases-particularly the high IgG and negative IgM.

 

Dawn

[KeithandElizabeth]

My son is also having a hard time getting rid of the mycoplasma. He has been on azithromycin (8 months) and omnicef (6 weeks) as well as the herb Noni (6 weeks). My son also has lyme and bartonella so I am thinking that these co-infections have made it difficult to treat each infection alone.

 

Elizabeth

[bmom]

for those that Biaxin was a big improvement, how long on it did you see a positive result? We are on day 5 and nothing good yet!

[peglem]

We have never tested mycoP levels, but I know that myco P is an intracellular infection. When we suspected that my daughter's strep was intra-cellular, we treated with a rifampin/augmenten combo w/ dramatic results- the best my daughter has ever been since I can remember. We did 10 days of this treatment, followed w/ 500mg zith every other day. We got 3 months of wonderful remission out of this, until we did low dose IVIG 2X. We're trying this same treatment again this week-probably starting tomorrow, to see if we can get her back in that good place. Her liver needs to be in good shape, but we checked that and it is.

[tired mom]

Hi tired Mom - We, too, are on Biaxin for myco from Dr. T and it has been a big gun for my dd. We are in the third week of a 30 day. I also wonder if she will slip once we are done with it. We will go back to Azith once it's done and see what happens and also add minocycline for the strong possibility of Lymes as well for 30 days. I have my doubts about the minocycline, but Dr. Jones (pediatric lymes specialist) wants her to try it. What were your dds myco IgG/IgM numbers? Is Dr. T also weighing in? He's the one who really helped us out with the myco. I didn't think that it was great to be on Biaxin for a long period of time...hard on the liver?

Hi Coco,

Her IgG was 5.0 and IgM 3200 when we did a month of biaxin. The IgM this week is still 2700 which is way to high. I too am concerned about her liver which we just had tested and thank God everything is fine.

[tired mom]

for those that Biaxin was a big improvement, how long on it did you see a positive result? We are on day 5 and nothing good yet!

Hi bmom,

We saw amazing results by the second week.95% of symptoms were gone. Sad part is relapse was quick once biaxin was finished. Are u treating myco?

[coco]

bmom - things started to noticably improve on day 9 with Biaxin.

[Santi]

Santi - what's "a long time" according to Dr. K? I don't mean to get too literal, but I am anxious to have her cleared of it, and I was under the impression from Dr. T that 30 days ought to do it.

 

He was unclear...just said "a long time". Maybe 30 days will do it. Andrea

[Santi]

For everyone out there who has been dealing with myco.p can you please tell me what treatment you are doing. A quick update as to where I am now. In the fall my daughter tested positive for myco. No IgG or IgM done at that point only had a positive result. Treated it with Zithromax. In March we started seeing Dr. T who retested her levels and lets just say they were off the charts. My dd did a month of biaxin which was like a miracle drug. After 1 week with no abx she relapsed. Started again on biaxin and just got her bloodwork done again. Everything came back good except in the myco area. Again her levels are extremely high. What kills this infection???I asked her doctor if this was common for the levels to remain high for such a long time and she responded that this is not common and she wants her to remain on the biaxin and we will retest in another month. Is anyone else having a hard time treating this???

 

My son tested positive for Myco P. Dr. K said it takes a long time to get rid of it. my son still tested positive after treatment with 500mg azith. Andrea

 

 

Andrea-

By testing positive, was that IgM. IgG or both positive. Did Dr. K treat it? Did you have IVIG with him? I am curious what Dr. K is doing with the positive cases-particularly the high IgG and negative IgM.

 

Dawn

 

Hi Dawn, interesting that you ask. Dr. K recommended testing him for Myco P due to my son's aggression and he tested positive with IGM and negative with IGG. I told Dr. K and all he said was lets make a note of it. He did not recommended treating it???? However, since my son is having bad days, I decided to start him on 250mg of Azith and see where it takes him. Andrea

[Iowadawn]

Andrea-That is pretty much what he told us with a neg IgM & very pos. IgG. His response a year ago was "your guess is as good as mine." Since that time there seems to be a lot of trx going on-not necessarily by Dr. K. He sees the correlation, but I'm not sure what else he is doing. I will re-run the mycoplasma titers in a month when we all go in for strep bloodwork for our entire family. It's some of the aggressive stuff that has been hard to leave, and myco could be the problem?? Dawn

[Iowadawn]

Andrea-That is pretty much what he told us with a neg IgM & very pos. IgG. His response a year ago was "your guess is as good as mine." Since that time there seems to be a lot of trx going on-not necessarily by Dr. K. He sees the correlation, but I'm not sure what else he is doing. I will re-run the mycoplasma titers in a month when we all go in for strep bloodwork for our entire family. It's some of the aggressive stuff that has been hard to leave, and myco could be the problem?? Dawn