Feeling very frustrated, Dr. J appointment seemed for nothing..

[lmkmip67]

I never heard anything from them for 5 weeks now on Ian's blood work. I finally called today and they said everything was negative so he would only have contacted me if the blood work was positive. I am waiting for them to fax the results to me so I can see them. I was not convinced of anything really, but after 3 years of not getting better with antibiotics, and IVIGs, Dr. B suggested seeing Dr. J. They want Ian to come for a followup in Sept....but then why? I want to cry. He is flaring at the moment, tics, OCD, mood, etc. The augmentin he has been on does seem to keep the tics down for the most part except when he flares. If he is off of it, they always return. So Ian has been tested for everything with Dr. B and now Dr. J, and we get no answers at all. Ian will be 10 this year and he still struggles 3 years later. Maybe this isn't PANDAS? But the tics started after a strep infection....I am at such a loss. What is next? And why should I even keep the follow up with Dr; J if there seems to be no reason and they weren't even going to contact me? I apologize for being a little over the edge. I was hopeful this would lead us in a good direction. But nope, another road block in helping my kid. So, no Lyme then....now what? PANDAS treatment seems to not help except keeping the tics down. And you can't tell me he is at 100%, he is not. We see Dr. B in a couple of weeks so I will have a lot to discuss with him. I literally don't know what to do now....

[lmkmip67]

The Western Blot came back with a positive on band 31 for IGG results and IND on band 41 for IGM and IGG. I guess that means nothing though. So confused and actually kind of mad I spent $1400 that day for really nothing. NOt saying I wish him to have lyme. But I sure would like answers and to find a way to help him.

[laure]

Tried to PM you but maybe your box is full?

[lmkmip67]

Oops sorry. I deleted a few.

[pr40]

perhaps augmentin is not working for him. our kids are on augmentin and zitromax. we saw more change when the second one was introduced.

[lmkmip67]

We have tried that combo before. But it may be time to try it again. I am almost thinking of trying the homeopathy route too. I am in the process of cycling him off of prozac. It seemed to help with the OCD a little, but not totally. He has been on that a year.

[LNN]

I'm so sorry. I can understand how frustrated and stuck (and broke) you must feel. If Band 41 is both IgM and IgG positve, doesn't than support the idea that he has some sort of active infection, even if not lyme? Shouldn't a dr want to figure out what that infection is? Not saying it's lyme. But it's antibodies reacting to something, no?

 

I wish I had some sage advice, some "aha" information that could put the wind in your sails. The only thing I can put on the brainstorming board (aside from finding out what else makes Band 41 positive), is methylation. If you ever decide to do the 23andMe spit test ($99) it could offer some insights and doesn't require a doctor's order. It's helped my family a lot. Feel free to PM me if you want to discuss it. In the meantime, your family is in my thoughts.

[lmkmip67]

Thanks, LLM. That is an idea. I will keep that in mind. I am also frustrated with Dr. J a tad. He was wonderful. But I would think after all the money I spent and all the blood he took, he could have called me to at least tell me his thoughts. Instead we are left with having to schedule a follow up in Sept. And if I didn't call to get my results, I would not have ever heard anything. I am not complaining about him, just frustrated with the situation as it seems he has help a lot of kids, but from the results, he clearly does not feel that Ian should be treated with anything at this point. Confusing.

[mama2alex]

I'm really sorry you're going through this. I've been there. You hit a road block, a doctor isn't helpful, there's a flare - and you feel like you'll never get your child well. But you will. There is obviously something medical going on - you just haven't figured out what yet.

 

A few thoughts:

 

1 - This is obviously PANDAS/PANS because a) he has all the classic symptoms, tics started after a strep infection and c) you've seen some improvement with antibiotics

2 - Band 31 is very specific for Lyme (Borrelia), so if he's IgG positive for 31, he's been exposed to Lyme at some point and this is very likely one culprit. I'd recommend reading Pamela Weintraub's book "Cure Unknown: Inside the Lyme Epidempic" to get a better understanding of the testing and why it's less important than a thorough evaluation by an LLMD. Also, reading the book will help you make a better intuitive call on whether you think Lyme might be involved. According to the book, Dr. Jones was seeing kids with sudden-onset OCD come in with Lyme as early as the 1980's.

3 - We've never seen Dr. J, but I understand he is an excellent LLMD. However, he has been under pressure from the state health officials for years, and they are still attempting to put him out of business. I have to wonder if this doesn't make him more cautious when diagnosing. Not sure about this though.

4 - I know you're upset right now, but I would definitely go to the follow up appointment with him and ask lots of questions and really try to understand whywhether he is saying it's not Lyme. It's possible there was a mix-up and the person on the phone gave you the wrong info. To me, it sounds like there probably is Lyme (based on symptoms and positive band 31).

 

Hang in there!

[mama2alex]

One more thought - can you call his office and see if you can get in for a follow-up sooner than September, or have a phone conversation with him? Tell them you are very confused by the response and need to ask him a few questions. September is a long time to wait.

[airial95]

On the brainstorming side - we struggled for a long time (although we are classic strep trigger - no lyme) and it wasn't until we did a longer term combo of Augmentin/Azith and Rifampin that we saw significant gains (and a stop to the chronic strep infections.)

 

My son even asked the doc for the rifampin to be refilled because it made him feel so much better. That is the only thing that knocked out our tics entirely, and got the OCD to a better place.

[jtp]

I'm so sorry to hear this too. I had an appt with a homeopath familier with PANS/PANDAS last week. I am hoping this will help. If you would like to try this route feel free to PM for more information.

[lismom]

All we had for bands were 31 positive and 41 positve. Zithromax only made things simmer. Augmentin helped a bit. It wasn't untill omnicef and flagyl did we see a bartonella rash. From there the pieces started to fall in place. I wouldnt necessarily give up on antibiotic combos or a lyme diagnosis.

[lmkmip67]

The band 31 only had one plus sign, is that still enough? I did just call the office back and left a message stating I need more clarification. Also, can anyone tell me what a good combo for Lyme might be? I do think I will try to get in for the follow up sooner, but want to see if Dr. B would put him on a combo that would possibly help too. We did Omnicef with something for a month, but I don't recall what. My notes are all at home.

[lmkmip67]

Taking notes of the other antibiotics suggested here too, thank you everyone. I am going to push through with this and see what happens. I am also getting my husband to have a throat swab today again at his physical follow up, I will go in as well this week. Just to see if anyone is still carrying strep around.