MycoP--tested positive, now what?

[LindaMW]

I have seen numerous postings about MycoP, but can anyone sum up what I can expect as a treatment plan and will this become a chronic thing or do abx kill it?

 

We first saw the Pans symptoms come back, a second go around for my son, in Nov 2012. Did not know what caused any infection but the symptoms where there. Started him on Augmentin but did not see improvment like we did previously. Stopped that and in January started Zith and saw a huge improvement. Got tested in Feb 2013 and now result say positive for Myco P. Is that why we saw an improvement when we switched to Zith?

 

There is so much information on Myco P I don't even know where to begin. Do not know the specifics of any antibody levels, they just told me he was positive. We will see a doctor in two weeks about it, but not holding out any hope because they have not been responsive to Pans all along. I want to go in prepared and have questions for them and be able to understand what they tell me.

 

Thanks

[Dedee]

Well if they have not been responsive to PANS, I would go ahead and start looking for another doctor. What you want to know is what the IgG and IgM levels are. The IgM shows active infection and the IgG indicates past infection. However, you can still have active infection if only IgG is elevated if you continue to see it rising and not falling. If they are saying it is positive then most likely your son has both elevated IgG and IgM. That most definately causes PANS symptoms. Myco is a stealth pathogen that has the ability to hide dormant in different areas of the body so he doesn't necessarily have to have respiratory symptoms to be carrying the infection. It is also very hard to get rid of. Your doctor will most likely want to give you one treatment dose of Zitromax and that's it. Problem is that it takes anywhere from 3 months to 2 years to clear chronic myco. Most doctors are not up to date on how to treat Myco p. You should find an LLMD. They know how to treat myco. My daughter showed some improvement on Biaxin but it wasn't until an LLMD started her on combination antibiotics that she really started to improve. Do your research. There is much out there by Garth Nicholson. He is considered the expert on Myco p. Don't fool around with a regular doctor. You won't get what you need. JMHO.

 

Dedee

[EmilyK]

Agreed with all of Dedee's points. Biaxin, Zith, and Doxycyline were all used in our family (4 of us with mycoplasma). One son on Zith since October cleared it when checked in Feb. He's continuing on Zith. I did a month of Biaxin and a month of antifungal with a two week taper of prednisone back in October and needed more Biaxin just recently. Very tough to clear! It manifested as upper respiratory, GI, joint pain, neck pain, ear infection, etc.

 

Best of luck!

Emily

[queenmother]

I don't know if it is appropriate for me to jump in but, in my quest for information to help my daughter, your posts are ringing all my bells. This is all sounding very familiar as she has tested positive for mycoplasm (IGg and IGm), some bands of Lyme. Two weeks in major university hospital yielded no help so I have been on this mission since bringing her home. Our local alternative doc ordered several panels and we are beginning to get some answers (positive for mycoplasma, HHV6, and Lyme...Bartonella is also probable;she did not test positive but she had the purple striations). My daughter is resistant to amoxicillin and every time she starts the azithromycin, she sinks into a dark depression and the rages get worse. The enlarged pupils and eating restrictions get worse, as well. I don't think this is a herx reaction because these are all the same things that led us to the hospital to begin with. She has taken azith before and tolerated it just fine so I am perplexed. And yes, I give probiotics. Could the azith be hitting the mycoplasm or lyme and causing a big flare? We are supposed to add it Omnicef but haven't been able to yet because things spiral out of control until I stop everything. Is this to be expected with die-off? I just don't know what to do.

I would love to get appointment with a PANS specialist (willing to travel) but am having a hard time convincing my husband that PANS is real. The "official" docs at the university hospital do not seem to believe in PANS and will not even entertain the idea. But I can tell you unequivocally, as her mother, she fits the criteria perfectly. This journey to help my kid has been a nightmare. I am curious to know what has worked best for you, even though I know every case is different. Did you all experience a really bad reaction in the beginning?

Thanks for any help.

QueenMother

[LNN]

IMO, you need an experienced LLMD (lyme literate MD) more than a Pandas specialist. Some use both and very often, you need more than one doctor on your team. But if you're starting out, my suggestion would be to start with an LLMD. Having multiple chronic infections (lyme, Bartonella, myco p, HHV6) will require combo abx plus detox support. It will not be a simple or quick journey. Pandas doctors are great for helping Pandas patients. But the complexities and honestly, the bizzareness, of lyme requires someone with a lot of experience. You can contact ILADS.org or post where you live and ask for a referral.

 

Just my personal experience, but a herx often produced an increase in the very symptoms we were trying to treat in the first place. Sometimes, lyme symptoms aren't produced from the living lyme bacteria but rather by the toxins the bacteria releases when it dies. So you'll have symptoms when the immune system kills lyme and you'll have worse symptoms when you add the right antibiotic (abx) and it teams up with the immune system to kill a higher quantity of bacteria. So you can't dismiss the possibility of a herx simply because it causes the very symptoms that led you to treatment. That's what a herx is - a worsening of symptom intensity - not necessarily a new set of symptoms you've never seen before. At least, that's been my experience.

[cobbiemommy]

I would have to agree with all of the above posts. To Queenmother (love that name), our experience has been that the Bartonella would not even budge until we added Rifampin to the mix. Expect a huge ramp up of agitation and obnoxious behaviors, but then things should get better for your child. We are still fighting Bartonella, but we are gaining on it!

[Dedee]

Just from our experience, the Zith did not help much for the Mycoplasma. I know they say it should and we saw a tiny bit of improvement but nothing significant. When we started biaxin we started to make progress and then after a few months on that things stalled. That was when we went to an LLMD. More progress was made by starting combination antibiotics. We have monitored my daughters titers about every 6 months for two years. Last month was the first time that her IgM levels were in the normal range. It was high normal, but still within normal range. Her IgG levels are still very high but lower than they have been. So we feel like we are making progress after two years of antibiotics. We are still fighting lyme and bartonella and still have neurologic symptoms from that so we are far from in the clear. Our challenge now is to find the right antibiotic combo for that. I know it can be done though and have full confidence in our LLMD. The trick with my daughter is to start slow with the antibiotics to avoid a huge herx and work up to the full dose. I had some trouble with my husband for a while too. Finally had to just get firm and tell him to get on board or get out of my way because I am going to get our daughter treatment with or without him. He is a believer now. Not sure that is the way to handle every situation but I was just tired of the whole thing at that point. If I had it to do over I would make sure to start treatment aggressively from the beginning. That usually means treating through an LLMD. JMHO.

 

Dedee

Edited April 15, 2013 by Dedee

[queenmother]

Thank you so much! We have started with doxycycline because she seems to tolerate it much better right now. I'm sure it's not the cure-all, by any means, but we are hopeful to kill off some of it so that maybe she can tolerate a different round in the future. I keep reading the names of the doctors who seem to be the experts and I have 'sort of' convinced the King (too many royal pain jokes running thru my head) that this option is much better than what we are dealing with now....so I'm making the appointment. Is the dr in Maryland better for myco/lyme/bartonella/HHV6 or Dr. B in Connecticutt? Or is there someone better than those two? Why is it so hard to find doctors who believe in and treat this bloody PANS? The doctors I'm dealing with act like I'm suggesting that the Princess is possessed by spirits and I need them to do an exorcism. It is so incredibly frustrating. Thank God for the one alternative doc who is trying to help us or I would not even have access to any medicine at all. Have any of you used doxy and what was your experience?

Heartfelt gratitude,

QueenMother

[Hopeny]

Fwiw despite the fact that dr b has a long wait list I find his experience as an immunologist invaluable for us. He has a deep knowledge of disease activity and antibiotics that I haven't found replicated in other specialities we have seen.

[rowingmom]

Yay for the King! It took a year of treatment and the huge improvement we had gained by that point for my DH to agree with my insistance on treating "out-of-the-box".

 

We saw great results with a combination of minocycline/malarone/azithromycin/plaquinel - symptoms declined to almost 0 . This was after 8 months of biaxin/rifampin which I thought was good and had reduced symptoms to a level of about 3/10. Addition of pulsed tindamax is still resulting in short-term herx reactions though. We have never used monotherapy, always abx in combination.

Edited April 17, 2013 by rowingmom

[LindaMW]

Well, we got the actual numbers, but like I figured this dr is not planning on treating w/abx. At this point my son has been on low dose (125mg) of zith since February and we have seen improvement, but now what?

 

Here are the numbers:

Mycoplasma IgG Ab 256

Mycoplasma IgM Ab Pos

 

Then under that it has the numbers for these:

IgA 143

IgG 998

IgM 119

 

This dr is going to refer w/neurologist who initally referred w/Dr. Tanya Murphy to order the blood work. So I don't know, I have to wait. I am still going to keep the low dose zith for now and I wanted to start him on Olive Leaf Extract.

 

If anyone can explain these numbers I would greatly appreciate it.

Thanks

[Dedee]

It looks like they did serum IgG, IgM, & IgA levels to check immune function. Without the reference levels for that lab it's hard to know if that is normal or not. As far as the myco titers, you have the problem I did with one of the labs I was forced to use once. They didn't run a quanatative level on the IgM. They only tell you if it is positive but don't actually give you a numeric level. It's only helpful in that it says yes there is an active mycoplasma infection. I made sure after that we used a different lab. I like to follow the numbers to see that they are falling and not going up. You have a number for the IgG level. So what you know is you need to be treating. That is good enough for now. Just make sure that from now on the lab you use gives a numeric value for both the IgG and IgM. We have been doing levels on my daughter every six months for 2 years. Her levels are dropping very slowly and we just now got her IgM levels in the high normal range. Her IgG levels are still elevated but are coming down so that is the important thing. For me it is important to have something tangible to see we are making progress. My daughter still has neurologic symptoms from the lyme and bartonella. Unfortunately, we can't monitor that as easily.

 

Dedee

[LindaMW]

Thank you so much Dedee, you told us more than the dr.

 

Unfortunately, this dr is not planning on treating, but we still are waiting to talk to another dr who will probably continue zith.

 

If it wasn't for us researching ourselves we would know nothing. Thank you again for your imput and knowledge.