Help with Zithromax/Myco

[JoyBop]

Im caught off guard! DS tested positive for Mycoplasma. I don't even know what the lab reference is yet but maybe someone could help. Myco IGG was greater than .91 (Doesnt sound too specific to me!)

IGM was 205.

 

The office said they wanted her on 5 days on/5 days off of Zithro and that they would call in a months supply. I went to pick it up and it was only a 5 day supply. Am I really supposed to go to the pharmacy every 10 days to pay a $20 copay? Also, they prescribed 4.5 mls per day. This is very different than the normal dose I see my kids get, but of course, there is nothing about PANDAS that is normal.

 

Can anyone chime in and give me some clues about the blood labs, as well as how zithro works and how often I should expect to have to pay copays/refills?

 

Thanks so much.

[searching_for_help]

I'm afraid I can't answer your questions, as our doc is dosing differently.

 

My DD's myco results were IGG 4.00, IGM 1.23 Her local ped didn't seem the least bit concerned with those numbers(they never are!), but her PANDAS doc put her on azithromycin 500 mg, once a day for 14 days. My husband said that is an extremely high dose. We started seeing herxing by day 3. It's day 11 and she's feeling better, but still has the intrusive thoughts. I think, like most PANDAS/PANS kids, she probably has several issues going on, but I think the herxing shows the zith is attacking something.

 

Seems strange they told you a months supply and you only got 5 days. Could you call the docs office and verify?

[JoyBop]

Yes I did call. There was some miscommunication somehow. Of I don't hear from them in the morning my PCP will call it in. We saw a very PANDAS friendly ENT dr. We are scheduled for a sleep study I'm July and hope she somehow qualifies for sleep apnea so we can have those huge tonsils removed.

[WorriedDADNMOM]

Joybop-------sending a PM PM back if you have questions.

[WorriedDADNMOM]

Joybop..................others might find this helpful too....so putting here as well. you will need the ranges for both in order to understand the ranges for positive.<br /><br />IGM/IGG are the Current(IGM) and Previous(IGG) measurement to figure out a current or previous infection. Our dd's was IGM of 5.9 H with a positive of greater than .9 So the H stood for "HIGH" Our Pedi did not even tell us and did not treat. We went on for several more months and things came to a head again. Needless to say we have gone the whole DAN route.<br /><br />As for the dosing, it should be done by weight and if your child is small and cannot take pill form, then they can give liquid suspension. This liquid suspension has a shelf life of 5-10 days so they(pharmacy) may only give a certain amount of suspension.<br /><br />The work around for incurring the higher expenses would be to tell the pharmacy that you want to pay for the ENTIRE script. You should receive a break in price in addition to the each time copay.<br /><br />One other thing, if you can, convert over to pill form. They are WAY cheaper than the liquid suspension. If your child cannot take pills, ask the pharmacy if a pill crusher and giving via apple sauce or other type food that can mix in the crushed Zithromax.<br /><br />Hope this help!!!!

[JoyBop]

Thanks for that response. Would you believe the specialist (so called pandas specialist) nurse called to tell me mycoplasma titres were very high. I asked them to fax the results to my PCP. she called and said it was negative! I called the specialist back on Friday asking for an explanation but have yet to hear back from them. I did manage to get a months worth if Zithromax called in he wanted me to to 4 on5 off. Does anyone else do that with Zith?

[WorriedDADNMOM]

I would ask the PCP to show them to you and explain why they are neg. But it does not surprise me.

 

The theory is zith has "staying" property that it keeps working 5 more days for a total of 10......thus always a f day script. Any Pandas/Pans doc knows this is most likely not enough time. For our worst kiddo we did a few five day courses prior to DAN doc doing a couple 30 day courses coupled with a protracted MWF prophylaxis. You can go to doctosvideos and they discuss ziths immune modulating properties if you don't just stop after 30 days.......thus thwthe MWF regimen. Hope this helps.

[JoyBop]

Thanks for that info worrieddadnmom (perfect name btw). I called again today for clarification. Today is Wed and my first msg was Friday. Now in really getting irritated. My PCP showed me the fax. It was initially given over the phone with no reference ranges. PCP then called the lab and had complete result faxed over. One result was less than .91 (negative) and IGM was 205. (Positive is greater than 775). I even called the lab myself to confirm. Meanwhile my PCP is having us take the Zithromax everyday at have strength (2.2 Mel's instead of 4.5). She doesn't trust 5 on 5 off with such high strept titres and PANDAS symptoms. Now I am really confused but trust my PCP at this point. So much for PANDAS specialists. I sure hope I hear back from the specialist soon.

[JoyBop]

Thanks for that info worrieddadnmom (perfect name btw). I called again today for clarification. Today is Wed and my first msg was Friday. Now in really getting irritated. My PCP showed me the fax. It was initially given over the phone with no reference ranges. PCP then called the lab and had complete result faxed over. One result was less than .91 (negative) and IGM was 205. (Positive is greater than 775). I even called the lab myself to confirm. Meanwhile my PCP is having us take the Zithromax everyday at have strength (2.2 Mel's instead of 4.5). She doesn't trust 5 on 5 off with such high strept titres and PANDAS symptoms. Now I am really confused but trust my PCP at this point. So much for PANDAS specialists. I sure hope I hear back from the specialist soon.

[Dedee]

Two of my PANS children tested positive for Myco P. We tried treating it through regular physicians but ended up going to an LLMD. Myco is a very difficult pathogen to eradicate and most physicians do not fully comprehend the seriousness of the infection. My daughter was treated for two years before her titers came down and it was only after using a combination antibiotic that we were successful. I urge you to educate yourself on Mycoplasma. Dr. Nicholson has some great information on the web and you can find some good information on some of the Lyme co-infection articles as well. Even if your child does not have lyme, it is best if you get your child treated my an LLMD. They know best how to treat Mycoplasma. The longer your child remains infected and poorly treated the more difficult it is to clear the infection completely from the body. My daughter took Zith alone for 6 months and her titers continued to rise. Biaxin helped her symptoms, but as I said she needed combination antibiotics. Her last titers showed her IgM in the high normal range and her IgG still high. That was in the winter. We are about to draw titers again because her LLMD is concerned that it may be becoming active again. (Constant dry cough) Many Myco patients regress after having normal titers.

 

I urge you to consider finding someone who will treat aggressively. Best of luck.

 

Dedee

Edited June 26, 2013 by Dedee

[norcalmom]

So it appears they made an error with the verbal reporting correct? From the actual numbers with ranges you have above, your child tests negative for MycoP - which is great!

But odd that they would not have had the actual results from the lab on hand. I've been at this for many years with over 13 doctors, never gotten a verbal from the lab- from the so or yes, but the labs have always given written report to the doctor.

But then you mention very high strep titers. Was that in a separate thread? I would imagine frequent strep throat, or chronic would be enough to get tonsils removed, so you should start tracking that.

 

I recommend asking for a copy of you child's records, and as you go along, ask for results of every test so you can build your own tracking, and you are ready with all relavant information if you switch doctors, or consult with a specialist. I always get my labs ASAP now- before speaking with the doctor. You have a right to them leagly, and I don't like to waste my time and money for a doctor to simply tell me some results that may be all normal. Additionally, you can do some of your own research on the results, and have some really good questions and ideas for your doctor when you do have a meeting to go over the results.

 

Best of luck- and if your strep is high- you may want to post those. I have seen. Number of people have success with Azith, as well as other antibiotics- Esspeciasly Augmentin XR. My son never had high strep titers - he had mycoP, which we dis iced 2 years into pandas treatment, while on Azith. For my son, the Azith workeed initially, for several montah, but then it was like it did nothing- although we kept taking it. He was on 500 day for years ( sometimes we we t down to 250- but he is over 120 lbs) .

[JoyBop]

Thanks for that reply. This gets more interesting all the time. I called the office to clarify the confusion. The doc called me personally and explained that by lab standards she is negative but his experience with PANDAS pts has led him to interpret labs differently. He said she had 205 gig and lab considers 775 positive. He said her 205 shows that she has the antibodies and has exposure and that we can not ignore this in a pt with a compromised immune problem. He said he has seen this many times and if we don't treat the infection and prevent it now we will give the antibodies the opportunity to wreak havoc and cause more problems down the road.

 

As for the strep, I have two kiddos and have posted about both of them in different threads. This one is dd. her ASO is still positive after 8 weeks on Amox and DNASE was very high. (No numbers right in front if me). So she still has the infection. My PCP told me that only a culture or swab counts as proof for insurance to cover t and a. With our insurance its 6 or more infections in a year. I'm sure I could fight it if the Ent wanted to do it. She's going for a sleep study even though I really don't think she has apnea. Those tonsils are just enormous!

 

No one has commented on DS labs and I sure would love some input. Even our docs don't have a clue. His ASO are still 775 after 8 weeks of abx but still normal dnase. Does he not make the dnase titres? Or is this still a raging infection. Btw he has a sore throat. Swabbed and cultured neg after two weeks of abx but I know that it can hide when on abx.

 

Anyone else hear that mycoplasma is a problem even when titres are within normal range?

[JoyBop]

Btw, they did fax the entire lab result to my PCP and I have received a copy as well. The red range is on the printout.

[T_Anna]

The doctor we saw yesterday said she has many patients who respond much better to Azithtomycin than Augmentin. You may want to switch. There was a recent study that said Azithromycin, even without the abx component can help immune disorders and even IBS.

 

We just stopped Biaxin so that we can try Azithromycin at 500mg a day.

 

T.Anna

Ds15

[JoyBop]

My DS is on Zithromax now. She's on a megadose. My doc found Dr Ts dosage protocol and it was quite a bit higher than what she was on. All I can say is, yesterday was the worst day in this child's life with fits of rage and PANDAS flares. It took 2 therapist 25 Minutes to get her out of her occupational therapy gym bc she was so out of control. She was on 4.5 mms up until last night when her dose was switched to 11.2 Mls. She woke up sweet as a peach today and has been a perfect angel all say. Fingers crossed.