PANDAS and Lyme

[judith]

Hi everyone,

 

I was wondering if someone could shed some light on my situation before I go to my appt with Dr. B on the 28th.

My son( age 8) has been being treated for lyme since last October with Zithromax and Rifampin. His physical symptoms have almost dissappeared .

 

He was just diagnosed with PANDAS in Jan. We found out becasue his bloodwork form the lyme doctor showed he had a DNase of 960 and a strep titer of 600.He also had all the overnight severe ocd symptoms which all started one day when he was 4. We thought it was just a severe case of "bad thought" ocd. All the psych meds never did much for him.

I had his titers redone last month and they were lower but still very high.His immunoglobulin level was very low. His pediatricain put him on amoxicillin for 10 days.

 

His tics stopped in May but his ocd is awful.He is extremely agitated and irritable and when he was in school, the teachers didn't know what to do with him. He has declined dramatically.

My main question is, Why aren't his titers coming down? We had the whole family do the 48 hour strep culture and we all came back negative. Does it sound like he needs IVIG? I cannot afford this.Insurance is going to cover the office visit on an out of network referral, but will not cover the IVIG. Does Dr B always want to do IVIG? Does it sound like he needs it?

Thanks for any input

Judy

[AmySLP]

Although I can't speak in regards to the Lyme, I can tell you of my experience with Dr. B. He does not jump right to IVIG. I do believe he'd recommend a different antibiotic (other than ammoxicillian) and for a longer duration first for your son.

 

My daughter, nearly age 6, has been on Augmentin ES 600mg twice daily for a month and we see him back this Monday. In the months prior to this, she was on Clindamycin & Azithromycin, but did not have much success with these eliminating symptoms. Dr. B felt that if she did well on the ABX alone, he'd recommend continuing these for at least 1 year before trying to wean her off. She's 95% better on the ABX, so I'd imagine he'll be suggesting continuing with that based on our prior appt.

 

I know there are many others on the forum who will have wonderful suggestions for you. Hang in there!

 

Amy

[KeithandElizabeth]

Hi Judith:

 

I am wondering what doctor treated your son for lyme? Was it an ILADs doctor?

 

My son had very severe OCD from the LYME/PANDAS and the IVIG really helped him, but the lyme treatment is helping even more. The key with the lyme treatment is catching the co-infections, such as mycoplasma, bartonella and babesia and treating them as well. On top of this, it is important to treat the lyme cysts with a cyst bursting drug such as flagyl or tindamax or the lyme just goes into hiding, only to come back later. I think a really good ILADS doctor can help with all of this plus the strep issues as well.

 

Elizabeth

[sf_mom]

I agree with Elizabeth. My friend's son was classic PANDAS at on-set due to RF. Prior to his 3 IVIG treatment he was tested for Lyme and he came back positive for Bartonella and Ehrlichia. I tend to believe the co-infections came first the Bartonella/Ehrlichia that allowed the strep to elevate to RF. If you hit the Lyme hard and fully you may not need IVIG. My friends son is BEST he has been in over two years and its the combo of antibiotics that is doing the trick.

 

Retest for Lyme/co-infections through Igenex prior to pursuing IVIG.

 

-Wendy

[mkur]

Which Igenex lyme disease test did you do? The person on the phone said you have to be off abx for at least one week. Did you do this? Thanks.

[judith]

Which Igenex lyme disease test did you do? The person on the phone said you have to be off abx for at least one week. Did you do this? Thanks.

No, my son has been on the antibiotics for 9 months

[judith]

I agree with Elizabeth. My friend's son was classic PANDAS at on-set due to RF. Prior to his 3 IVIG treatment he was tested for Lyme and he came back positive for Bartonella and Ehrlichia. I tend to believe the co-infections came first the Bartonella/Ehrlichia that allowed the strep to elevate to RF. If you hit the Lyme hard and fully you may not need IVIG. My friends son is BEST he has been in over two years and its the combo of antibiotics that is doing the trick.

 

Retest for Lyme/co-infections through Igenex prior to pursuing IVIG.

 

-Wendy

 

 

Thanks to all of you for all your help!

judy

[judith]

Hi Judith:

 

I am wondering what doctor treated your son for lyme? Was it an ILADs doctor?

 

My son had very severe OCD from the LYME/PANDAS and the IVIG really helped him, but the lyme treatment is helping even more. The key with the lyme treatment is catching the co-infections, such as mycoplasma, bartonella and babesia and treating them as well. On top of this, it is important to treat the lyme cysts with a cyst bursting drug such as flagyl or tindamax or the lyme just goes into hiding, only to come back later. I think a really good ILADS doctor can help with all of this plus the strep issues as well.

 

Elizabeth

 

 

We see Dr. Jones in CT. My son's ocd is very severe. It's horrendous. He has shown some improvement with the abx. My son was on Flagyl for two weeks and the school called the doctors office insisting he be taken off of it because he had regressed cognitively. His writing was like a kindergarteners. He literally was just sitting in class doing nothing except for making a whining noise.

Dr. Jones said he felt IVIG would be beneficial for my son, but I'm just really confused with this mess.

thanks

Judy

[judith]

Although I can't speak in regards to the Lyme, I can tell you of my experience with Dr. B. He does not jump right to IVIG. I do believe he'd recommend a different antibiotic (other than ammoxicillian) and for a longer duration first for your son.

 

My daughter, nearly age 6, has been on Augmentin ES 600mg twice daily for a month and we see him back this Monday. In the months prior to this, she was on Clindamycin & Azithromycin, but did not have much success with these eliminating symptoms. Dr. B felt that if she did well on the ABX alone, he'd recommend continuing these for at least 1 year before trying to wean her off. She's 95% better on the ABX, so I'd imagine he'll be suggesting continuing with that based on our prior appt.

 

I know there are many others on the forum who will have wonderful suggestions for you. Hang in there!

 

Amy

 

I was wondering if Dr. B might switch my son's antibiotics around. He does not do well with certain ones. I've been terrified the entire 9 months he has been on all these antibiotics, because when my son was 6 he got C-Difficle from antibiotics and was very very sick.

I'm just wondering if he is antibiotic resistant because his titers are still so high after 9 months of antibiotics.

 

thanks

Judy

[T_Mom]

Judith--I am so sorry your son is suffering with severe OCD symptoms. I know how painful that is to watch--

 

As you may know, Dr K. www.webpediatrics.com

often uses a steroid burst as essentially a "test" to see if IVIG might hold potential benefit for a child.

 

If you have seen an improvement on antibiotics (and we did too) -- have you considered trying a steroid burst?

Our daughter was greatly helped by two steroid bursts while being on full strength antibiotics.

[justinekno]

From what I have heard, Dr. B. works with Dr. Jones (the pediatric lyme dr) and does have some knowledge about Lyme.

 

I was wondering if Dr. B might switch my son's antibiotics around. He does not do well with certain ones. I've been terrified the entire 9 months he has been on all these antibiotics, because when my son was 6 he got C-Difficle from antibiotics and was very very sick.

I'm just wondering if he is antibiotic resistant because his titers are still so high after 9 months of antibiotics.

 

thanks

Judy

[momofgirls]

Judith

I really agree the elizabeth and sfmom about the importance for getting at all of the infections. Surely if your son struggled with the flagyl the he still has lyme and possibly other co-infections preventing him from ridding the strep. I caution the use of a steroid burst as these infections will proliferate with its use. Dose Dr Jones believe your son is rid of lyme? I assume he has checked for all the tic co-infection but as you have probably heard the tests are not conclusive. Ivig may help your son fight the infections but will not 'cure' him if he is still infected. Press Dr Jones and Dr B to go at this thing hard and don't give up.

[judith]

Judith

I really agree the elizabeth and sfmom about the importance for getting at all of the infections. Surely if your son struggled with the flagyl the he still has lyme and possibly other co-infections preventing him from ridding the strep. I caution the use of a steroid burst as these infections will proliferate with its use. Dose Dr Jones believe your son is rid of lyme? I assume he has checked for all the tic co-infection but as you have probably heard the tests are not conclusive. Ivig may help your son fight the infections but will not 'cure' him if he is still infected. Press Dr Jones and Dr B to go at this thing hard and don't give up.

 

 

 

 

My son was tested for other co-infections and they all came back negative , except for a weak positive on Babesia.

He actually had steroids four times BEFORE we knew he had lyme( once for asthma when he was hospitalized and three times for severe poison ivy)

 

I will defintitey talk to Dr. J and Dr. B about my growing concerns.

 

Thanks so much for all of your replies!!

Hugs

Judy

[KeithandElizabeth]

Judy:

 

As you probably know, it is often hard to get a positive on the co-infections and I would therefore consider treating the weak positive. Most of the co-infections have a 50% false negative rate. Babesia is one of the only co-infections that is not helped by antibiotics and an anti-malaria drug is used. Both of my kids have babesia and they are both on Mepron for the babesia. I have to say that this has caused the most herxing compared to all of the antibiotics and I would therefore consider treating it this summer while your son is not in school. I really think that these co-infections or the remaining lyme is what is holding your son back from dealing with the strep while he is on 2 antibiotics.

 

I would also consider a high dose probiotic since your son is on the antibiotics and he has already had C. Dif. Custom Probiotics has a great value (you can google their name and get to their web site) and both of my children are on 400 billion units a day and they have had zero gut issues with the antibiotics.

 

I know how difficult and overwhelming this all is for your whole family. I am always torn between researching PANDAS or lyme and how best to treat. There does not seem to be one doctor who is completely versatile in both. Our lyme doctor does believe that when we rid our children of the lyme and its co-infections, then they will have a much easier time handling the strep and any other bacteria or virus.

 

Elizabeth

[judith]

Judy:

 

As you probably know, it is often hard to get a positive on the co-infections and I would therefore consider treating the weak positive. Most of the co-infections have a 50% false negative rate. Babesia is one of the only co-infections that is not helped by antibiotics and an anti-malaria drug is used. Both of my kids have babesia and they are both on Mepron for the babesia. I have to say that this has caused the most herxing compared to all of the antibiotics and I would therefore consider treating it this summer while your son is not in school. I really think that these co-infections or the remaining lyme is what is holding your son back from dealing with the strep while he is on 2 antibiotics.

 

I would also consider a high dose probiotic since your son is on the antibiotics and he has already had C. Dif. Custom Probiotics has a great value (you can google their name and get to their web site) and both of my children are on 400 billion units a day and they have had zero gut issues with the antibiotics.

 

I know how difficult and overwhelming this all is for your whole family. I am always torn between researching PANDAS or lyme and how best to treat. There does not seem to be one doctor who is completely versatile in both. Our lyme doctor does believe that when we rid our children of the lyme and its co-infections, then they will have a much easier time handling the strep and any other bacteria or virus.

 

Elizabeth

 

 

 

Elizabeth,

Thank you so much for sharing all of your knowledge!!!!!! My son is on a good probiotic, but I still fear the C-difficile again.

I was really begininning to wonder if he was antibotic resistant to these infections, but you have shed light on my fears.

Dr. Jones did say it would take a minimum of 18 months to treat his lyme completely and it has only been 9. (even today he has been complaining all day of a "pumping headache" which is one of his physical symptoms from the lyme)

I feel very torn myself---Lyme or PANDAS???

 

Hugs

Judy