PANDAS and Lyme

[Megs_Mom]

We talk a lot with our Lyme Literate Doc (for my husband) about what creates a susceptibility to PANDAS/PITAND, especially since we cannot find an underlying immune deficiency. She feels that some agents (like a bacteria or spiro) need another agent to sort of pair up with - and then it can cause an issue. So she thinks that an underlying issue like Lyme may then make a child susceptible to strep based neurological issues. I suspect that any research to back this up is a LONG way off, so take it with a grain of salt. I tend to think that until the Lyme is fully treated, that you would be susceptable to PANDAS exacerbations.

 

I am really sorry for your son's challenges - sounds like you are finding the best docs in the nation to help you - so you are certainly on the right path.

[sf_mom]

Judith,

 

I've been posting a lot about Lyme recently because there were a lot of children originally diagnosed with PANDAS now to be discovered positive for Lyme and not posting to this forum. My friend's son who had RF and had a slower evolution of PANDAS symptoms has come back positive for Bartonella and EHRLICHIA. He has always done well post IVIG for about 8 weeks and then a slow increase of symptoms would return. His ASO, Anti-DNase-B and TICS resolved after his first treatment. BUT the OCD, panic attacks and rages remained present. He has done well, so far, post his 3IVIG when the antibotics were changed to address the current co-infections. Again, with proper diagnoses up front maybe the cost of IVIG can be saved with correct antibiotic regimen. I'm positive Dr. Jones told you IVIG may or may not help and he is very versed in addressing C. Diff if it should crop up. I'd hang in there and follow his direction as I know he'll direct you properly on IVIG if and when its needed for your son.

 

I look forward to hearing more of your son's recovery process.

 

-Wendy

Edited July 12, 2010 by SF Mom

[sf_mom]

I'm coming to a very similar conclusion but will not be able to concretely confirm until our Lyme results are back. I've tested two of my children. My older DS and my younger DD. I choose to have my DD tested because she has the weakest immune system currently, not had IVIG and the highest CaM Kinase results. I should know in about a week or two and will definitely post results.

 

 

 

We talk a lot with our Lyme Literate Doc (for my husband) about what creates a susceptibility to PANDAS/PITAND, especially since we cannot find an underlying immune deficiency. She feels that some agents (like a bacteria or spiro) need another agent to sort of pair up with - and then it can cause an issue. So she thinks that an underlying issue like Lyme may then make a child susceptible to strep based neurological issues. I suspect that any research to back this up is a LONG way off, so take it with a grain of salt. I tend to think that until the Lyme is fully treated, that you would be susceptable to PANDAS exacerbations.

 

I am really sorry for your son's challenges - sounds like you are finding the best docs in the nation to help you - so you are certainly on the right path.

[MomofJacob]

Are there viral issues linked with PANDAS (and/or Lyme) such as XMRV?

 

 

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

[KeithandElizabeth]

It appears that there many viruses/bacterias and parasites can create a "flare" with lyme/PANDAS and also challenge the healing process.

 

Have you checked for all of the lyme coinfections yet?

 

My daughter is still fighting the coinfection babesia and this parasite has been really difficult to eradicate from her body.

 

I know that if you browse through lymenet, you will see that many people with lyme also discuss the EBV quite a bit. The XMRV virus has just been discussed recently as well since it has been in the news in its relation to chronic fatigue. If you google Dr. Burrascano and XMRV, you will find that he has found a strong correlation between lyme and XMRV.

 

 

Elizabeth

[matis_mom]

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

Hi Judy,

I will try to answer some of your questions based on our own experience.

Titers take some time to come down, but if you are seeing a positive trend, then it's probably just a matter of time. My son has been on abx for a year now and his titers are still not back to normal, but coming down overall, although with a recent ear infection they went back up again. But if all he has had recently are 10 days of amoxicillin, well, I think you might want to try a longer course of something stronger.

For our son too tics and chorea are gone but OCD remains. He is still on high dose Augmentin. Did you ever try a steroid taper combined with continued hd antibiotics?

As far as the family goes, my husband and I always tested negative, but had elevated ASO, so we are being treated for that.

We have our first appointment with Dr. B next week, so I can't speak much about him, but I would think he might try a stronger antibiotic and steroids before recommending IVIG. Some kids see great improvement with the right antibiotic and steroids.

Hope this helps!

Isabel

[MomofJacob]

I would love to test for XMRV as well as lyme but it is a very expensive test. We are going to be testing for lyme through IGenex and with the phone consult with Dr B that is going to be very expensive. This has been an exhausting journey. We are emotionally, physically and financially drained. If we would have know years ago what to look for it would have been easier.

[MomofJacob]

Can anyone tell me why IGenex is the most recommended lab? Is there something that they are doing that all the other labs don't know about when it comes to Lyme detection? What makes their Lyme testing more accurate than all the rest?

[JTs-Mom]

IGeneX uses 2 different strains of Borrelia burgdorferi, whereas most commercial labs use just one strain. IGeneX also uses a 12% solution instead of the 10% solution used by many labs. The higher % allows for greater separation of the bands on the western blot. Most importantly, IGeneX shows all of the bands, not just those that the CDC has selected for its surveillance criteria.

 

Since IGeneX specializes in testing for tick-borne diseases, I would also assume their staff is very well trained in reading the western blots compared to staff at commercial labs that run tests for many different things.

Edited September 18, 2010 by JT's Mom

[lyme_mom]

They test for multiple strains of Lyme and they test for ALL known antibodies to Lyme. Clongen labs does this too out of MD and there may be others but i dont yhink any of hese labs take insurance. Bands 31 and 34, considered such important markers for lyme that the failed Lyme vAccine was based in part on them., are not included in the regular lab tests for Lyme. This is why you cannot rely on the Lyme screening test or the standard western blot. These tests are incomplete and it's an outrage that these tests do not test for all known antibodies to Lyme.

[MomofJacob]

We only had the 4090 test done - It costs around $260. I am hoping that will give us a good idea of infection or not..Results should be in on Oct 2, 2010.

They test for multiple strains of Lyme and they test for ALL known antibodies to Lyme. Clongen labs does this too out of MD and there may be others but i dont yhink any of hese labs take insurance. Bands 31 and 34, considered such important markers for lyme that the failed Lyme vAccine was based in part on them., are not included in the regular lab tests for Lyme. This is why you cannot rely on the Lyme screening test or the standard western blot. These tests are incomplete and it's an outrage that these tests do not test for all known antibodies to Lyme.

[Chemar]

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

 

 

Hi

I am totally mind boggled by the fact that a school called a doctor to instruct him medically about a patient of his ???

The school has absolutely no right to call your doctor's office to make demands

 

If the doctor feels a change in meds is needed that is one thing...but not because a school instructs him to!

 

I am really shocked by that!

[MomofJacob]

We have had a positive IgG from IGeneX and, at the advice of Dr. Murakami in BC, we are also testing our son's Babesia level through IGeneX. Anyone else have the babesia test done?

[sf_mom]

Yes, my younger son is positive for both Babesia and Bartonella via Igenex.... Dr. suspects similar for my other children due to the fact its congenital Lyme.

Edited November 6, 2010 by SF Mom

[Iowadawn]

The babesia FISH was positive here for our son, as was bartonella IgM (along with Bb). The lyme doc didn't test these when they sent in my Lyme WB's. I am thinking that b/c I was positive for Bb (congenital) then, like SFmom, I am positive for these as well. Dawn