provocation test

[norcalmom]

We had our first Lyme appointment on Saturday. Thanks for referring us SF Mom! Dr. G was great.

 

DS was inconclusive on initial tests. So we are doing a provocation test. So, DS will have a shot of ?antibiotic, followed by 4 days of very heavy antibiotic cocktail (omnicef, Doxy and Amox), and his urine will be collected every morning.

 

If he has Lyme, what kind of herx might this result in? I'm trying to time it so that his end of semester tests at school won't be affected. And, I'm scared!!

 

How does herxing compare to an exacerbation in pandas kid (type of behavior / symtoms, duration, severity)?

 

When DS initally went on Azithromycin for pandas - he just got better, but then again he was just coming out of a major pandas exacerbation. He's been on full does azith for a year.

 

 

FYI - for anyone that has high mycoplasma IgG.

My son also has extremely high igG for mycoplasma (2450) but not IgM. Dr G said that he considers REALLY high titers like that to mean that there is still some mycoplasma there - regardless of what the IgM says. Sounds very similar to strep titers to me. You can have high titer and increasing titeters, and not culture positive.

 

Thank you all!!!

[sf_mom]

Wow, I did not know you had made it to Dr. G. Congratulations on getting there.... they truly are experts on Chronic Infection will be able to give you concrete answers one way or the other. Very versed at treating Mycoplasma as well.

 

As for immediate herx'ing...... sometimes we have seen flu like symptoms within hours. As for tics those took days to return and start to increase. Sometimes the herx doesn't become full blown until the 3 or 4 week. So, it depends. BUT, I do not believe there will be an extended herx with protocol for testing purposes. I also suspect with the hdIVIG and antibiotics for one year previous your son's bacterial load is down and he won't herx too badly at least not as badly as exacerbation. I'd plan it going into weekend so you can watch his response and collect on appropriate days and mail in the right time frame.

 

Its never as bad as you fear.

 

Good luck and they will definitely help solve the Myco no matter the other results.

 

-Wendy

Edited January 11, 2011 by SF Mom

[norcalmom]

Thanks Wendy! You're always so generous with your time and sharing your experiences. And YESS - regardless of Lyme, Dr G was the only one that seemed to have a clue about Mycoplasma, and what extremely high titers mean. He seemed up to date and talked about what I've been reading in studies on-line (unpromted by me even- as soon as he read the number!) .

[philamom]

Thanks Wendy! You're always so generous with your time and sharing your experiences. And YESS - regardless of Lyme, Dr G was the only one that seemed to have a clue about Mycoplasma, and what extremely high titers mean. He seemed up to date and talked about what I've been reading in studies on-line (unpromted by me even- as soon as he read the number!) .

I agree -- Thanks Wendy!!!

 

norclamom- Wow, that is a very high titer. What abx was your son on to treat it...zith?

[norcalmom]

my son has been on full strength azith over a year. (well, solidy full strenth for past 5 months, and prior to that he was mostly full strength but sometimes at prophylactic dose) Dr G doesn't think its working anymore, at least not against any Lyme he might have or mycoP. I do still think it does something for his pandas, but then again, I'm to chicken to take him off it now since it was what worked in the past - and there are so many illnesses going around this time of year so its hard to tell.

One of my reasons for doing the Lyme and MycoP checking is becasue we have never tried another antibiotics, and though perhaps could see even more healing, and if that doesn't work we'll do another IVIG. He had one in early August. (GREAT stuff!)

 

So I guess the answer is - we aren't 100% sure he has it (Dr G thinks so) and will probably look at changing antibiotics after Lyme provocation test to see if we can bring the mycoP igg down.

 

HIs only symptom is a dry cough that lasts for longer than a typical cold - 2 weeks or maybe a little more. I didn't know he had it.

 

He did have pneumonia when he was 6 years old, and failed all but one pneumoniae titer. But this is the first time we tested for it. He is post ivig 5 months.(doing great, but still some stuff). So, I'm doing my due diligence before switching antibiotics or another ivig. Want to know what I'm dealing with since he's never had strep throat (but did have a probably perianal strep ) that set of his major exacerbation at 9 years old.

[sf_mom]

You are welcome.... I'm just relieved you made it there with those high, high, high mycoplasma titers. If you like Dr. G, you'll really like Dr. H.... He is a thinker but once you get to know him he really opens up. Always good for tons of information, knows his bacteria's and antibiotics. You are welcome to reference our family experience PANDAS/Lyme with him.

 

We haven't talked about Mycoplasma to a great extent because I'm always grilling him about other things and so far non issue for us (oops, I'm positive). Non issue for my kids 'I think'. I'll be interested at what you learn for your son as you go forward with treatment.

 

Again, I don't think he'll herx badly for the short course and testing proposes.... probably 'I'm not feeling well' comment or a headache.

 

-Wendy

[sf_mom]

Do you know if you are doing PCR or Dot Blot test specifically?

 

-Wendy

[norcalmom]

I dunno - but will knwo today as we are going in for an I.M.

 

I have to collect urine for the next 5 days, and I think I have to send it in - maybe that tells you weather it is PCR or "dot"?

 

I did discuss that if he has Lyme - he probably go it form me - if I indeed have it. I grew up in RI, my sister had Lyme, a neighbor that is an avid gardener had it 3 times, I know lots of people with it there and I've pulled many, many, tics from myself. He did tell me he is looking for the actual Lyme, not an antibody to it this time.

[sf_mom]

Thanks.... I just want to confirm once again they do provocation for both PCR/DNA and Dot Blot urine testing and protocol is not specifically listed on website. I'm seeing them at the end of the month and will also confirm.

 

Let's just say if you are positive I wouldn't surprised. Do you have any 'mild' symptoms?

 

-Wendy

[norcalmom]

Yes - it is for Both. I asked, and it is an option to check on the order sheet (and payment sheet! its double)

 

So, I don't know if they BOTH REQUIRE provocation, but we are doing provocation, and they are testing for both. (one urine sample, two tests)

[sf_mom]

Well you'll definitely know you have Lyme if positive!!! On our results it was something like 98% accurate but unfortunately I don't have a copy in front of me. Dot Blot is also in the 90% +.... but you'll see those percentages on your results when received.

 

THANKS for clarifying that they do provocation for both tests.

[lyme_mom]

I did the dot blot-both types of analysis. I was told the provocation antibiotic was to flash kill any Lyme so that it shows up in urine. I got a bicillin shot. I was trying to determine if my Lyme treatment had worked and whether my new symptoms were Lyme so they said you need to wait two months after antibiotics to be sure that older dead Lyme isn't confusing the results. My doctor told me that I was negative on one of the two tests and positive on the one that is more difficult to find Lyme (forgot which one). So I was definitely positive but one of the dot blots didn't find it becaus it isn't easy to find. I was shocked that it was still there after five or six months of treatment. My doctor said this test is accepted by more doctors because it's hard to debate it if you find dead Lyme not just antibodies.