Frustrated, confused, angry & running out of ideas

[sf_mom]

Eljomom: Igenex does test for Bartonella. Fry Labs also does a blood smear for Bartonella... I like Fry because "sometimes" you'll be able to pick up on the presences of biofilm in result. Might be other labs as well but Dr. dependent which labs they prefer.

 

Beesknees: I haven't heard anything about 'Envita' but if I lived in the Pheonix area it would definitely be something I'd explore. There is a few things they state about their treatment process that I like... anti-fungals, anti-viral and immune boosting protocols.

[NMom]

Thanks to all of you for your responses. It is clear that there is no easy answer here and I appreciate all the feedback from both 'Lyme families' and 'PANDAS families'. I apologize for the insinuation that Lyme testing/treatment is a distraction/rabbit hole. I've been very focused on how we'd deal with PANDAS for so long...what is the next step, where do we go from here, etc. I just didn't see this coming and I'm honestly not sure where to focus now. For me the hard part is that we had just gotten our heads around the idea of doing PEX and were really hopeful that it would bring some great results..and then WHAM...Lyme shows up. My DH is about to change jobs which means we switch insurance carriers and I've been told that the one we will switch to does not cover PEX or IVIG very often - our current one covers it. So there is a time element to this decision if we think PEX is the right answer...but I don't know anymore. How do we determine which to treat first..Lyme or PANDAS?

 

I have emailed my PANDAS doc but rarely get a response from that office. I'll keep trying because I do need to understand what the steriod burst is supposed to show us. I think we will consider a second opinion as well. I know Dr. B deals with co-infections and Lyme quite often ... other suggestions? How do you decide whi

[dcmom]

I will briefly add my 2 cents for what it's worth (we are still out of power due to hurricane!).

 

I agree, and our experience has been similar to pow pow.

 

My kids were completely "normal", until they had strep 2.5 years ago at ages 5 and 8. They had overnight insets of OCD plus other related issues.

 

For us, pex and steroids (both oral and IV) have been major life changing treatments. I personally cannot imagine if we had not used them.

 

At the same time, I was interested in Lyme due to the talk on the forum. I tested - and of course both had some positive IGM bands. We followed that path for a while (multiple, pulsing antibiotic schedules)- and it did NOTHING for us. I didn't realize how uncomfortable it would be to give my kid a slew of abx, for something I was not convinced of.

 

We abandoned that path, with the reassurance of a couple of top notch docs, well connected with a prominent lyme researcher.

 

Following the pandas path has done well by my girls. The have had long term relief from pex (1 year, 1.5 years)- but they are not cured. PANDAS is ( IMHO) an autoimmune disorder- this most likely means no cure- just hopefully long term remmission.

 

I know many on the forum are opposed to the need for a "label"- but I completely disagree. If you have a child with Lyme- you may be advised to avoid steroids (although I don't think a month long burst woul be immunosuppressive, and may help you figure stuff out)- yet steroids (and IVIG, and PEX) have been lifesavers for many of our PANDAS kids.

 

In the end, it's going to be your call unfortunately . And that is why this is so hard.

 

Your doc, while human, has been extraordinary for my family (and several others on the forum). This doc pushes for 100%, fights the insurance companies, and sticks their neck out to treat this "controversial" disorder with "experimental" treatments. This doc has saved my kids from continued profound suffering. So while not perfect-?worth taking the advice seriously.

 

I hope you can find your direction, and find peace with that, and that your son continues to heal.

[dcmom]

Just wanted to add that both girls are off ALL abx and supplements (except vit D)- one since mid June, the other for a few weeks- and both continue at about 95%. We have some residual OCD we are dealing working on with ERP.

 

We see a pandas doc tomorrow to discuss a protocol for the school year.

[eljomom]

dcmom----tried to pm you, but your inbox is full

 

I will briefly add my 2 cents for what it's worth (we are still out of power due to hurricane!).

 

I agree, and our experience has been similar to pow pow.

 

My kids were completely "normal", until they had strep 2.5 years ago at ages 5 and 8. They had overnight insets of OCD plus other related issues.

 

For us, pex and steroids (both oral and IV) have been major life changing treatments. I personally cannot imagine if we had not used them.

 

At the same time, I was interested in Lyme due to the talk on the forum. I tested - and of course both had some positive IGM bands. We followed that path for a while (multiple, pulsing antibiotic schedules)- and it did NOTHING for us. I didn't realize how uncomfortable it would be to give my kid a slew of abx, for something I was not convinced of.

 

We abandoned that path, with the reassurance of a couple of top notch docs, well connected with a prominent lyme researcher.

 

Following the pandas path has done well by my girls. The have had long term relief from pex (1 year, 1.5 years)- but they are not cured. PANDAS is ( IMHO) an autoimmune disorder- this most likely means no cure- just hopefully long term remmission.

 

I know many on the forum are opposed to the need for a "label"- but I completely disagree. If you have a child with Lyme- you may be advised to avoid steroids (although I don't think a month long burst woul be immunosuppressive, and may help you figure stuff out)- yet steroids (and IVIG, and PEX) have been lifesavers for many of our PANDAS kids.

 

In the end, it's going to be your call unfortunately . And that is why this is so hard.

 

Your doc, while human, has been extraordinary for my family (and several others on the forum). This doc pushes for 100%, fights the insurance companies, and sticks their neck out to treat this "controversial" disorder with "experimental" treatments. This doc has saved my kids from continued profound suffering. So while not perfect-?worth taking the advice seriously.

 

I hope you can find your direction, and find peace with that, and that your son continues to heal.

[NMom]

DCMOM - I agree that our doctor's heart is in the right place and I do take the advice seriously. I'm at a point though where I think I need to understand the logic. We keep having these false starts and I'm not sure this doctor is well versed in Lyme...I could be wrong but that's my general sense. You and I discussed before that each doc has their own weaknesses/strengths and sometimes it takes a village to figure this all out! I'm curious though - did your girls come off abx on the advice of a PANDAS doc? I'm also curious who you saw for the Lyme - can you PM me?

 

My biggest issue is that my son is very functional. We use ERP for the OCD and relaxation techniques to manage the tics. The tics are the real issue although they are wrapped up with the OCD.....and I know that PEX often helps with tics. I'd be happy to get a few months of baseline even if we ended up regressing later. But I doubt our PANDAS doc will do PEX without the steriods first and I'm scared to use the steriods now with the Lyme diagnosis. We are not in crisis right now...don't want to do something that puts us there but not sure where to turn next then.

[beeskneesmommy]

Eljomom: IgeneX picked up Lyme whereas the typical w. blot did not x 2. Also, surprise!! picked up Bartonella. Results just cam in on the 22nd so now we have more info and the aggressive abx protocol is even more justified (and working)!

[Christianmom]

If you doctor is only ordering steroids as an indication of the success of PEX or IVIG, maybe they would consider a 5-day burst instead of the 30-day taper as a happy medium. Other doctors do this (Dr. T and Dr. K (I think)).

[beeskneesmommy]

Thanks to all of you for your responses. It is clear that there is no easy answer here and I appreciate all the feedback from both 'Lyme families' and 'PANDAS families'. I apologize for the insinuation that Lyme testing/treatment is a distraction/rabbit hole. I've been very focused on how we'd deal with PANDAS for so long...what is the next step, where do we go from here, etc. I just didn't see this coming and I'm honestly not sure where to focus now. For me the hard part is that we had just gotten our heads around the idea of doing PEX and were really hopeful that it would bring some great results..and then WHAM...Lyme shows up. My DH is about to change jobs which means we switch insurance carriers and I've been told that the one we will switch to does not cover PEX or IVIG very often - our current one covers it. So there is a time element to this decision if we think PEX is the right answer...but I don't know anymore. How do we determine which to treat first..Lyme or PANDAS?

 

I have emailed my PANDAS doc but rarely get a response from that office. I'll keep trying because I do need to understand what the steriod burst is supposed to show us. I think we will consider a second opinion as well. I know Dr. B deals with co-infections and Lyme quite often ... other suggestions? How do you decide whi

 

 

"Rabbit hole" - consider that perhaps it is yet another layer of this complex problem. I thought that DS5 was "straight" Strep:PANDAS and then found out last week that he tested + for Lyme & Bartonella. I guess I should have been devistated, but I looked upon this development as more information with which to help him. We have been using only 1/2 of the arsenal up until a month ago - 1 abx aimed at PANDAS, whereas what we needed was treatment aimed at PANDAS + co-infections. I am going to put my faith in the hope that we have uncovered something that will assist us in recovery. Much warmth and good stuff to you and yours! -Kath

[NMom]

Good way of looking at it Kathy! Now that it's all sinking in I too can see that this might open up other options for us..things that could be very helpful. It just took us a lot of emotional turmoil to make the decision to do PEX so it felt like a huge twist when the Lyme came back positive. I'm adjusting to the new picture with the help of many of the people from this forum (who seem much wiser and calmer than me). I think it helps me to just sit with any new information for a day or two before jumping into any course of treatment.

 

I think ChristianMoms suggestion to do a shorter steriod burst makes sense too. I still need to understand what information we are going to get from doing that though and still haven't been able to reach our doctor - will keep trying though.

 

Thank you to everyone on this forum who takes the time to respond, PM me and spend time talking through these decisions over the phone!

[dcmom]

Eljomom- I cleaned up my inbox.....

[NMom]

For those of you that have done 30-day steriod bursts, what was the dosage? My son is 7 and weighs about 53 lbs - the dosage is 30 mg/day for 7 days/20 mg for 7 days/ 10 mg for 7 days and 10 mg every other day for 7 days. That seems really high based on other posts I've seen.

 

Also..what side effects should I be expecting if we do this?