First lyme appointment

[Christianmom]

Had first appointment with lyme doctor Wednesday for my son, 16, who has severe, debilitating OCD as his only symptom. Bottom line is the doctor thinks my son has lyme and bartonella as a clinical diagnosis. My son was on biaxin 1,000 mg/day for PANDAS and the lyme doctor kept him on this and added amoxicillin 2,000 mg/day. (The first week I am only to give my son 1,000 mg. of amoxicillin to reduce herxing). When we return for our next appointment at the end of the month, the doctor wants to add rifampin to the biaxin and amoxicillin (don't know the dosage).

 

I was wondering if anyone could tell me what herxing to expect and when--none so far (it is day 2), just his usual severe OCD. Will I see his OCD worsening as a herx?

 

My son has never had any stomach or joint issues and is on three capsules a day of iFlora (probiotic).

 

Also, could anyone tell me how long until there will be improvement. Will there not be improvement until he is on the rifampin?

 

Thank you all for your help and encouragement.

[Christianmom]

Oops! I meant to say we return to the lyme doctor at the end of July (not the end of the month).

[hawks]

Well I will give you our experience so far. DS soon to be 15 was diagnosed with PANDAS Jan 2011 after the start of severe exaceration as of NOV 10' -a Flumist in Nov may have been the thing that set this excerbation in motion - he was also wrestling and may have been in close contact with strep. Blood tests revealed elevated titers and family doc put DS15 on 250mg aZith end of DEC 10'. Went to PANDAS doc in Jan who recommended that we do IVIG as soon as possible. Because of what we had seen on the forum regarding Lyme we wanted to rule this out before doing IVIG based on several of the posts. Both our dogs were positive for lyme and were treated and our son is an avid outdoorsman - hunting, fishing so we figured he may be a risk and our gut told us to check into this even though he lines up with so well with PANDAS. We started working with a LLMD in Feb. who got him on high dose antibotics in addition to the azith which he was not getting relief from. DS sons major symtoms,like your sons is the severe OCD - he has been out on school since Dec. 10' - he also has many of the other classic PANDAS syptoms - age regression, seperation anxiety, emotional liability, inability to focus - especially with Math tutoring. After our visit with LLMD we decided to work with him and began treatment based on clinical diagnosis. IGENEX test came back negative overall but had some positive bands that doc said to continue treatment for. He also came back positive for HHV6 co-infection.

 

So in Feb 11' he began taking 875mg x 2 Augmentin in addition to the 250mg aZith. He had also just started taking 25mg of Zoloft which we ended up going off of then starting back up at 12.5mg. So about 20 days into this mix we started to see remarkable improvements in son's behavior. This excerbation came with severe contamiation fears he had basically been non-functional on a futon in his room playing games or watching movies -taken over by thoughts and compulsions with a bowl of soapy water by his bed. Our house was turned upside down and we were in survival mode.

 

When the mix started working he started coming out of his room, eating with the family, sibilings could come near him, he let the dogs come near him, started doing things outside again and things began to get soooo much better. He was functioning much better but still had / has a long way to go. Doc added Flaygl to the mix about a month ago and that has shaken things up quite a bit which he thinks is a HERX - it brought back some washing compulsions, intrusive thoughts, possibily verbal tics (could be compulsions not sure), moments of mania/hyperness, more emotional/depressed, also had more headaches and fatique. Though not a severe as before we have definately seen a worsening of the symtoms - doc told us to stop Flagyl until gets back to where his was before then we will start up again lower and slower.

 

So the LLMD thinks the PANDAS was brought on by the Lyme infection. He thinks once we tackle the underlying lyme the PANDAS should resolve. We will just keep praying and plugging away here. I thank you all on this forum for guiding our family through this experience. We have learned so much from all of your experiences. It has been a wealth of education for us. I will be praying for your son's recovery. God Bless.

[LNN]

The generic answer to how long lyme treatment lasts is 18-24 months. The generic answer to when people start seeing initial improvements is a few weeks to a few months. But that's like asking when a woman will get married (assuming she will at some point). Some get married at 19 and others get married at 40. So maybe the average is 30, but that doesn't tell you when your own daughter will get married. It's a very individual thing.

 

The big "if" in generic statements is IF your son only has bartonella and lyme. But if he's had it for a long time, if he has other problems (immune dysfunction, mold exposure, mineral deficiencies....many other things I'm not even aware of), then these things need to be dealt with as well. So for your own sanity, I think you can hope for good signs within a few months but assume it's going to be a long process. That way, you don't have your hopes dashed constantly. Every road block will yield clues and give you a chance to eliminate one more piece of baggage that you didn't even know you had. But it does tend to take the wind out of your sails if you thought you'd be at it for x months and instead you're at it twice as long.

 

If you don't see improvements in the next 3-8 weeks?, push for why. Usually something's in the way and needs to be addressed.

[Iowadawn]

Well I will give you our experience so far. DS soon to be 15 was diagnosed with PANDAS Jan 2011 after the start of severe exaceration as of NOV 10' -a Flumist in Nov may have been the thing that set this excerbation in motion - he was also wrestling and may have been in close contact with strep. Blood tests revealed elevated titers and family doc put DS15 on 250mg aZith end of DEC 10'. Went to PANDAS doc in Jan who recommended that we do IVIG as soon as possible. Because of what we had seen on the forum regarding Lyme we wanted to rule this out before doing IVIG based on several of the posts. Both our dogs were positive for lyme and were treated and our son is an avid outdoorsman - hunting, fishing so we figured he may be a risk and our gut told us to check into this even though he lines up with so well with PANDAS. We started working with a LLMD in Feb. who got him on high dose antibotics in addition to the azith which he was not getting relief from. DS sons major symtoms,like your sons is the severe OCD - he has been out on school since Dec. 10' - he also has many of the other classic PANDAS syptoms - age regression, seperation anxiety, emotional liability, inability to focus - especially with Math tutoring. After our visit with LLMD we decided to work with him and began treatment based on clinical diagnosis. IGENEX test came back negative overall but had some positive bands that doc said to continue treatment for. He also came back positive for HHV6 co-infection.

 

So in Feb 11' he began taking 875mg x 2 Augmentin in addition to the 250mg aZith. He had also just started taking 25mg of Zoloft which we ended up going off of then starting back up at 12.5mg. So about 20 days into this mix we started to see remarkable improvements in son's behavior. This excerbation came with severe contamiation fears he had basically been non-functional on a futon in his room playing games or watching movies -taken over by thoughts and compulsions with a bowl of soapy water by his bed. Our house was turned upside down and we were in survival mode.

 

When the mix started working he started coming out of his room, eating with the family, sibilings could come near him, he let the dogs come near him, started doing things outside again and things began to get soooo much better. He was functioning much better but still had / has a long way to go. Doc added Flaygl to the mix about a month ago and that has shaken things up quite a bit which he thinks is a HERX - it brought back some washing compulsions, intrusive thoughts, possibily verbal tics (could be compulsions not sure), moments of mania/hyperness, more emotional/depressed, also had more headaches and fatique. Though not a severe as before we have definately seen a worsening of the symtoms - doc told us to stop Flagyl until gets back to where his was before then we will start up again lower and slower.

 

So the LLMD thinks the PANDAS was brought on by the Lyme infection. He thinks once we tackle the underlying lyme the PANDAS should resolve. We will just keep praying and plugging away here. I thank you all on this forum for guiding our family through this experience. We have learned so much from all of your experiences. It has been a wealth of education for us. I will be praying for your son's recovery. God Bless.

Hawks-

 

I have been so engrossed in our situation that I missed the Lyme dx on your end!! are you seeing the doc in Iowa?

[hawks]

Iowadawn -

Yes - we are going to the doc in Iowa. This is actually the first post I have put up regarding the dx - I do more reading than posting usually. How is your son doing - have things calmed down for him. He and your family have been in my prayers.

[EmersonAilidh]

My symptoms are extremely physical so your son very well might experience something totally different, but herxing for me was just a huge blob of malaise. I sat in our recliner in the living room & couldn't be bothered to move. Not for laziness but you just feel SO exhausted & weary & fatigued. The brainfog also got pretty intense but that very well may have been my TLE. one week in was the low point for me but I was on a whole lot more antibiotics than that.

 

Does your son have a lot of history with Strep? I only ask cos I'm completely & totally resistant to Amox by now, not to mention most Cillin's. Does your doc us ART testing?

[Iowadawn]

Iowadawn -

Yes - we are going to the doc in Iowa. This is actually the first post I have put up regarding the dx - I do more reading than posting usually. How is your son doing - have things calmed down for him. He and your family have been in my prayers.

 

Will PM you. It has been a rough road. The addition of Namenda on Tues seems to be helping with rigidity/autistic traits/over the top behavior. The LLMD's comment to me re "How he is doing": "You are not going to like when I say I really don't know, but...I really don't know. We have seen glimmers only to lose them. Yes, IV abx is something I would like to try, but am afraid he will yank out the line." We are hoping we have a bit more leverage with the court-ordered CINA if we want to see him in-patient in order to do more aggressive txs. We go Wed for pre-trial. I wish we didn't have the state involved, believe me. Now that we do we will do EVERYTHING in our power to use this situation to help Evan. I will PM you. Thank you for praying. Dawn