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Could this be LYME? Please take time to read :)


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Sorry this is so long.

 

In 2006 son started overnight with tics and sever separation anxiety. We thought all those years it was mild tourettes with anxiety. Then I learned about PANDAS.

 

I started learning about PANDAS in Sept. of 2010 . We just thought he had transient tics, very bad anxiety,and OCD. I had started supplements in September when his symptoms had gotten worse while we were on vacation. He seemed to get better. A couple of his tics (eye and facial mostly) totally disappeared for about 3 weeks. Then they reappeared with a rash, so I thought I needed to take him back to the doctor because I thought the rash might be scarlet fever. He tested negative for strep but I begged his doctor to test his ASO titers and they were very high. She didn't believe the whole PANDAS thing so I went home disappointed and determined. A couple of days later I went to see my doctor with a sore throat (thinking I had strep) My test was negative, but I preceded to tell my GP about Christian and his blood test results. I had the Sammy book with me and told her all about PANDAS. I then asked her if she would be willing to correspond with Dr. Latimer in Maryland if I chose to go see her. She then said, with a smile on her face, I will be happy to do that. In fact I would be happy to go ahead and give him an antibiotic and see what happens now. She said,"wouldn't it be great if you didn't have to go to MD. " Then she looked at my husband as said we should go ahead and test you for STREP and your daughter and make sure no one is a carrier in your house. I thought I had died and gone to heaven. She said, now I can't promise your insurance is going to cover all of this, but I will be happy to get you a price on whatever test you want just in case it wil not be covered. Long story short I got Christian there the next day bright and early at 7:30 A.M. She did an exam and then prescribed him 875 mg Augmentin 2 times a day for 3 weeks and then she wants to see him for a follow-up. Also when I took him to see her, she had another doctor in training there who was really big into the nutrition side of things and he said it would be good to try gluten free and he told me the supps I had him on were perfect, except for the P5p, (for some reason) something to do with dopamine. Anyway, I would love to hear your story and what Dr.Kalb's view on PANDAS is and what test he did.

 

He continued on Augmentin for 50 days and then he got the dreaded C-Diff and He was treated with Flagyl and was better. He never got to 100 percent on Augmentin. I would say 50 percent better. We were off everything over the holidays and things seem to be going okay. Still not sleeping in his own bed, still tics and anxiety but better. We saw a DAN doctor and got a lot o bloodwork done. He still had

 

high Anti-DNase-B 465 after 50 days of Augmentin

Immunoglobulin G Subclasses Panel - low total IgG

Thyroid- Low TSH, High T4- Elevated TPO Antibodies

EBV Past infection

 

HE STARTED MY SON ON 250MG AZITH A DAY FOR 30 DAYS- Does this reaction to Azith mean it could possibly be Lyme?

 

It's been crazy for the last few days. Actually for the last five days.. He is definitely in a flare that began on Sunday, January 23rd before we even started the Azithromycin. I wasn't going to start supplements back until I could see if it was just the abx helping (if they help... the abx seem to making him worse but maybe that means their doing their job), but I caved in this morning and started him back on everything supplement wise that I still had and I will be ordering a few more things as soon as I finish this email/blog post.

 

Last night he he was feeling really bad right before bed and had already been ticcing like CRAZY all day. As he was lying in the bed next to me he was shaking a little and had a cold clammy sweat. He curled up as close to Allen as he could get and finally fell asleep. He woke up with a horrible headache this morning and a sore neck, still ticcing like crazy. I think I might go easy on school today. He just took his supplements and is running a bath as I type. I figured an epson salt bath wouldn't hurt. I am so praying this is herxing from the new antibiotic. I'm so anxious my chest has been hurting, but I know it's from all the worrying I'm doing. I know I should just give it to the Lord and I have, but it's so hard watching your child suffer.

 

He also says he has been having ringing in the ears. That's new.

 

Should I keep taking Azith?

 

 

In His Hand,

Cindi

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Sorry this is so long.

 

In 2006 son started overnight with tics and sever separation anxiety. We thought all those years it was mild tourettes with anxiety. Then I learned about PANDAS.

 

I started learning about PANDAS in Sept. of 2010 . We just thought he had transient tics, very bad anxiety,and OCD. I had started supplements in September when his symptoms had gotten worse while we were on vacation. He seemed to get better. A couple of his tics (eye and facial mostly) totally disappeared for about 3 weeks. Then they reappeared with a rash, so I thought I needed to take him back to the doctor because I thought the rash might be scarlet fever. He tested negative for strep but I begged his doctor to test his ASO titers and they were very high. She didn't believe the whole PANDAS thing so I went home disappointed and determined. A couple of days later I went to see my doctor with a sore throat (thinking I had strep) My test was negative, but I preceded to tell my GP about Christian and his blood test results. I had the Sammy book with me and told her all about PANDAS. I then asked her if she would be willing to correspond with Dr. Latimer in Maryland if I chose to go see her. She then said, with a smile on her face, I will be happy to do that. In fact I would be happy to go ahead and give him an antibiotic and see what happens now. She said,"wouldn't it be great if you didn't have to go to MD. " Then she looked at my husband as said we should go ahead and test you for STREP and your daughter and make sure no one is a carrier in your house. I thought I had died and gone to heaven. She said, now I can't promise your insurance is going to cover all of this, but I will be happy to get you a price on whatever test you want just in case it wil not be covered. Long story short I got Christian there the next day bright and early at 7:30 A.M. She did an exam and then prescribed him 875 mg Augmentin 2 times a day for 3 weeks and then she wants to see him for a follow-up. Also when I took him to see her, she had another doctor in training there who was really big into the nutrition side of things and he said it would be good to try gluten free and he told me the supps I had him on were perfect, except for the P5p, (for some reason) something to do with dopamine. Anyway, I would love to hear your story and what Dr.Kalb's view on PANDAS is and what test he did.

 

He continued on Augmentin for 50 days and then he got the dreaded C-Diff and He was treated with Flagyl and was better. He never got to 100 percent on Augmentin. I would say 50 percent better. We were off everything over the holidays and things seem to be going okay. Still not sleeping in his own bed, still tics and anxiety but better. We saw a DAN doctor and got a lot o bloodwork done. He still had

 

high Anti-DNase-B 465 after 50 days of Augmentin

Immunoglobulin G Subclasses Panel - low total IgG

Thyroid- Low TSH, High T4- Elevated TPO Antibodies

EBV Past infection

 

HE STARTED MY SON ON 250MG AZITH A DAY FOR 30 DAYS- Does this reaction to Azith mean it could possibly be Lyme?

 

It's been crazy for the last few days. Actually for the last five days.. He is definitely in a flare that began on Sunday, January 23rd before we even started the Azithromycin. I wasn't going to start supplements back until I could see if it was just the abx helping (if they help... the abx seem to making him worse but maybe that means their doing their job), but I caved in this morning and started him back on everything supplement wise that I still had and I will be ordering a few more things as soon as I finish this email/blog post.

 

Last night he he was feeling really bad right before bed and had already been ticcing like CRAZY all day. As he was lying in the bed next to me he was shaking a little and had a cold clammy sweat. He curled up as close to Allen as he could get and finally fell asleep. He woke up with a horrible headache this morning and a sore neck, still ticcing like crazy. I think I might go easy on school today. He just took his supplements and is running a bath as I type. I figured an epson salt bath wouldn't hurt. I am so praying this is herxing from the new antibiotic. I'm so anxious my chest has been hurting, but I know it's from all the worrying I'm doing. I know I should just give it to the Lord and I have, but it's so hard watching your child suffer.

 

He also says he has been having ringing in the ears. That's new.

 

Should I keep taking Azith?

 

 

In His Hand,

Cindi

 

idk if you should keep him on zith, or if it is herx..hopefully someone w/ more info will come in...

 

how much does your son weigh?

have you thought about giving some bentonite clay or activated charcoal to help detox?

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Cindi

 

I can't answer the lyme question for you. But I did want to tell you that my son had a similar worsening on Azith last year. He had been on 2 courses of Biaxin and showed improvement improvement. About 2 weeks after stopping the Biaxin his psych symptoms started ramping back up and he felt sick again. I took him to Redi care where they dianosed a sinus infection and gave him a z pack. Within a few hours of the first dose he flew into an exorcist type rage (which he had been without for about a month) and his OCD ramped up. By the 2nd dose, he was thrashing on the floor and told me he felt like he was crawling out of his skin. Per out PANDAS doc, we took him off the Azith and put him back on Biaxin. Within a few hours of the Biaxin, he told me he felt better in his brain, and it was steady improvement after that. So I don't know what it is about the Azith (he had never been on it before) but wanted you to know we also had a very bad experience with it.

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It could definitely be a herx response resulting from a number of potential chronic infections: Mycoplasma, Lyme, Bartonella, Babesia, etc.

 

I recommend seeing an LLMD in your area to investigate other potential infections in addition to high strep titers that might be causing your sons TICS and high anxiety.

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Hello and welcome. I am sorry for everything you and your family are going through. Our experience, when we started on zith with no other antiboitics (before knowing about lyme and thinking it was "only" pandas), my dd's did not react poorly. But when we started our lyme treatment, we started with amoxicillian and when it was time to start the zith our LLMD recommended taking one dose and waiting 3-6 days for the herx and once it subsided, to work up slowly to full dose. And I did herx a lot from that one dose.

 

So I do feel like it could be a reaction due to lyme or coinfections, at least enough to investigate further. I am glad you have an openminded doctor! I hope open to the subject of lyme too.

 

Susan

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Cyndi,

 

Sorry for all that you are going through. Poor Christian. It's so hard to say what's going on but I have 2 kids who were treated for PANDAS and never made enough gains from being on a one abx. We flipped around from PEN VK to Biaxin to Augmentin. Back in Sept '10 as new symptoms were emerging, specifically frequent urination and even bedwetting which was VERY abnormal, our neuro added Zith to the Augmentin they were on. After that, more Lyme-like symptoms surfaced. It's always so hard for me to distinguish whether it was just Lyme naturally progressing, the addition of Zith to the mix, the steroids that were added to try to control PANDAS and to prepare for IVIg but knowing that our family and so many others have seen so much improvement by seeing an LLMD, I'd find one ASAP to decipher through his particular symptoms. A good LLMD knows a lot about infections in general and can steer you in the right direction, I believe. I tell myself all the time that hindsight is 20/20 but while I was fighting to see top PANDAS doctors and spending a ton of money in that direction, I wish I had the wisdom to see our LLMD earlier b/c we could have avoided a lot of heartache, wild goose chases, missed school days, stress, etc. when we didn't have a handle on it, nor did their doctors at the time. Nothing is worse than watching your child suffer. But nothing is sweeter than seeing that turnaround and real progress. Maybe an LLMD could help weed through what's going on and turn it around.

 

Best of luck!

 

Kristie

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CALL YOU DOCTOR OR PHARMACIST !! Azith has been reported to cause hearing loss and tinitus (ringing in the ears) that may not resolve when you go off the drug -

 

I dont' wan to scare you, but my son has been on azith for over a years so I'm always looking for side effects in him (esspecially when I found out it can cause deafness!)

 

http://www.drugs.com/sfx/azithromycin-side-effects.html

 

Here is an excerpt from that web page

_________

Seek medical attention right away if any of these SEVERE side effects occur when using Azithromycin:

 

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue; unusual hoarseness); bloody stools; changes in hearing or hearing loss; chest pain; eye or vision problems; irregular heartbeat; muscle weakness; pounding in the chest; red, swollen, blistered, or peeling skin; ringing in the ears; seizure; severe diarrhea; stomach cramps/pain; trouble speaking or swallowing; yellowing of the skin or eyes.

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I am not sure whether to piggyback on this thread or to start my own topic but it seems similar to Cindi's situation so I thought I would just post here.

 

Cindi - I was curious if you have kept your child on the azith or did you discontinue. How is he doing?.

 

I do plan on trying to get in touch with the doctors tomorrow regarding this but I almost feel as if I am between doctors right now.

 

We met with Dr. B. in Conn. for PANDAS in Dec. and he prescribed augmentin for Aidan. Right after thet appointment we found out that Aidan son had a positive Lyme test.

 

A couple of weeks ago we had an intial consultation with a LLMD but we have not started treatment - I was given a list of supplements to try (which I am dragging my feet on.) and blood tests to run (which should be in by now) and we are going back in a couple of weeks during which I believe that we should start treatment.

 

Since I can not travel to both doctors I changed my follow up with Dr. B.last week to a phone consult. Dr. B. changed Aidan's antibiotic from the augmentin to the azith. since azith works better on Lyme. We started the azith last Tuesday and since we have changed we are seeing worsening behaviors at home and school - more aggression, whinniness, loud vocalization, standing on chairs. We have also noticed that his throat is really raspy and he somtimes has a raspy cough.

 

So, I am trying to figure out if this is a herx or if it is a reaction to the azith. I guess there is a third option that he has some type of virus/illness that is causing the raspy throat and exacerbation. He did seem a little off right before the change in antibiotics but the behavior got bad they day after we made the change and we noticed the raspy throat came on day 5 of the azith. His behavior today is still extreme today which is day 7. I have not tried anything to help herxing but I picked up some benedry tonight.

 

Any input on this?

Elizabeth

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I am not sure whether to piggyback on this thread or to start my own topic but it seems similar to Cindi's situation so I thought I would just post here.

 

Cindi - I was curious if you have kept your child on the azith or did you discontinue. How is he doing?.

 

I do plan on trying to get in touch with the doctors tomorrow regarding this but I almost feel as if I am between doctors right now.

 

We met with Dr. B. in Conn. for PANDAS in Dec. and he prescribed augmentin for Aidan. Right after thet appointment we found out that Aidan son had a positive Lyme test.

 

A couple of weeks ago we had an intial consultation with a LLMD but we have not started treatment - I was given a list of supplements to try (which I am dragging my feet on.) and blood tests to run (which should be in by now) and we are going back in a couple of weeks during which I believe that we should start treatment.

 

Since I can not travel to both doctors I changed my follow up with Dr. B.last week to a phone consult. Dr. B. changed Aidan's antibiotic from the augmentin to the azith. since azith works better on Lyme. We started the azith last Tuesday and since we have changed we are seeing worsening behaviors at home and school - more aggression, whinniness, loud vocalization, standing on chairs. We have also noticed that his throat is really raspy and he somtimes has a raspy cough.

 

So, I am trying to figure out if this is a herx or if it is a reaction to the azith. I guess there is a third option that he has some type of virus/illness that is causing the raspy throat and exacerbation. He did seem a little off right before the change in antibiotics but the behavior got bad they day after we made the change and we noticed the raspy throat came on day 5 of the azith. His behavior today is still extreme today which is day 7. I have not tried anything to help herxing but I picked up some benedry tonight.

 

Any input on this?

Elizabeth

 

Yes we have him on it still and things seem to be a lot better than when I wrote this. I'm holding my breath as I type that... :) He definitely got worst immediately when starting it.

 

It's so hard to know what to do. It seems no case is just like the other. We go back to our doctor in two weeks and it seems like forever from now. I'm thinking about finding an LLMD as everyone seems to benefit from that type of doctor.

 

Praying for a miracle for us all,

Cindi

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I am not sure whether to piggyback on this thread or to start my own topic but it seems similar to Cindi's situation so I thought I would just post here.

 

Cindi - I was curious if you have kept your child on the azith or did you discontinue. How is he doing?.

 

I do plan on trying to get in touch with the doctors tomorrow regarding this but I almost feel as if I am between doctors right now.

 

We met with Dr. B. in Conn. for PANDAS in Dec. and he prescribed augmentin for Aidan. Right after thet appointment we found out that Aidan son had a positive Lyme test.

 

A couple of weeks ago we had an intial consultation with a LLMD but we have not started treatment - I was given a list of supplements to try (which I am dragging my feet on.) and blood tests to run (which should be in by now) and we are going back in a couple of weeks during which I believe that we should start treatment.

 

Since I can not travel to both doctors I changed my follow up with Dr. B.last week to a phone consult. Dr. B. changed Aidan's antibiotic from the augmentin to the azith. since azith works better on Lyme. We started the azith last Tuesday and since we have changed we are seeing worsening behaviors at home and school - more aggression, whinniness, loud vocalization, standing on chairs. We have also noticed that his throat is really raspy and he somtimes has a raspy cough.

 

So, I am trying to figure out if this is a herx or if it is a reaction to the azith. I guess there is a third option that he has some type of virus/illness that is causing the raspy throat and exacerbation. He did seem a little off right before the change in antibiotics but the behavior got bad they day after we made the change and we noticed the raspy throat came on day 5 of the azith. His behavior today is still extreme today which is day 7. I have not tried anything to help herxing but I picked up some benedry tonight.

 

Any input on this?

Elizabeth

 

Yes we have him on it still and things seem to be a lot better than when I wrote this. I'm holding my breath as I type that... :) He definitely got worst immediately when starting it.

 

It's so hard to know what to do. It seems no case is just like the other. We go back to our doctor in two weeks and it seems like forever from now. I'm thinking about finding an LLMD as everyone seems to benefit from that type of doctor.

 

Praying for a miracle for us all,

Cindi

 

Cindi -I am glad to hear that he is doing better. It sounds like you have a great doctor.

 

This morning I am actually thinking my son may have a really bad cold or the flu as he is really stuffed up now and his brother's voice is a little hoarse now. So, at this moment I will wait it out. No school today anyway with ice and snow!

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We had EXACT same reaction. My dd9 was on zith per Dr. B for PANDAS since Oct 1, 2010. She was about 50% better within a month. On Nov 1 he added Augmentin to the zith, and she went CRAZY, it was truly horrible. He took her off the Augmentin and ran a 15 day steroid taper. She went back to her former status of 50% better. He then tested Igenex for lyme, he said it sounded too much like an underlying problem to be just PANDAS. She tested positive for many bands, including band 31, indicating lyme was present for over a year. He again added Augmentin Dec. 1, and this time, she was a different child. 95% of her OCD disapeared in about 2 weeks. In mid-December we saw a lyme doctor, she tested for coinfections, and they were negative, but still put her on tindamax for the weekends. Now 2 months later, she continues to progress every day. We still have about a 10 day cycle with a day of unpredictability every 10 days or so, but nothing at all like before, in fact, her worst day now would be her best day 2 months ago. I did learn that a bad reaction is probably a good thing, means you are getting at the problem. Keep going, stay strong, and keep a journal. The info is valuable to your doctor and to you as you try to recall all of this craziness to your doctor on your next visit. (I am forgetting as fast as she is improving!)

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I am not sure whether to piggyback on this thread or to start my own topic but it seems similar to Cindi's situation so I thought I would just post here.

 

Cindi - I was curious if you have kept your child on the azith or did you discontinue. How is he doing?.

 

I do plan on trying to get in touch with the doctors tomorrow regarding this but I almost feel as if I am between doctors right now.

 

We met with Dr. B. in Conn. for PANDAS in Dec. and he prescribed augmentin for Aidan. Right after thet appointment we found out that Aidan son had a positive Lyme test.

 

A couple of weeks ago we had an initial consultation with a LLMD but we have not started treatment - I was given a list of supplements to try (which I am dragging my feet on.) and blood tests to run (which should be in by now) and we are going back in a couple of weeks during which I believe that we should start treatment.

 

Since I can not travel to both doctors I changed my follow up with Dr. B.last week to a phone consult. Dr. B. changed Aidan's antibiotic from the augmentin to the azith. since azith works better on Lyme. We started the azith last Tuesday and since we have changed we are seeing worsening behaviors at home and school - more aggression, whinniness, loud vocalization, standing on chairs. We have also noticed that his throat is really raspy and he sometimes has a raspy cough.

 

So, I am trying to figure out if this is a herx or if it is a reaction to the azith. I guess there is a third option that he has some type of virus/illness that is causing the raspy throat and exacerbation. He did seem a little off right before the change in antibiotics but the behavior got bad they day after we made the change and we noticed the raspy throat came on day 5 of the azith. His behavior today is still extreme today which is day 7. I have not tried anything to help herxing but I picked up some benedry tonight.

 

Any input on this?

Elizabeth

 

Update on our situation - I wrote this last message on Monday evening and on Tuesday morning he started having a hhuge amount of thick nasal drainage all day and a fever of about 100 primarily in the morning. This is his 4th day of these symptoms. So, I am left in wondering if this is cold or flu virus, a herx, a bacteria that the augmentin was holding at bay but the azith is not getting to or a combo. Not sure whether to wait it out or to take action.

Elizabeth

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Reading your post is so encouraging. I'm praying when we go back to the doctor next week he will begin testing for co-infections/lyme. My so has his worst day in a long time yesterday and we are still on Azith...like day 18 or something like that. He has had some okay days but he still seems to be doing some herxing or just reacting to the abx....who knows???? I feel like I'm going in circles. I pray this will all end soon. The tics especially the ones with grunting and sniffing start to really bother me after a while. He seems the worst when he is trying to get to sleep. It's like his tics arein overdrive when he tries to go to sleep. Anyway. I'm so glad to hear about your success. so are you on Azith and Augmentin. Is that the normal 1st step if it's lyme?

 

We had EXACT same reaction. My dd9 was on zith per Dr. B for PANDAS since Oct 1, 2010. She was about 50% better within a month. On Nov 1 he added Augmentin to the zith, and she went CRAZY, it was truly horrible. He took her off the Augmentin and ran a 15 day steroid taper. She went back to her former status of 50% better. He then tested Igenex for lyme, he said it sounded too much like an underlying problem to be just PANDAS. She tested positive for many bands, including band 31, indicating lyme was present for over a year. He again added Augmentin Dec. 1, and this time, she was a different child. 95% of her OCD disapeared in about 2 weeks. In mid-December we saw a lyme doctor, she tested for coinfections, and they were negative, but still put her on tindamax for the weekends. Now 2 months later, she continues to progress every day. We still have about a 10 day cycle with a day of unpredictability every 10 days or so, but nothing at all like before, in fact, her worst day now would be her best day 2 months ago. I did learn that a bad reaction is probably a good thing, means you are getting at the problem. Keep going, stay strong, and keep a journal. The info is valuable to your doctor and to you as you try to recall all of this craziness to your doctor on your next visit. (I am forgetting as fast as she is improving!)

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