Newbie asking for help

[jjl]

All,

 

Just a newbie here asking for some help. I have been on the PANDAS board also because I am trying to determine whether our 10 yr old son has PANDAS issues or Lyme issues. Our son has moderate to severe autism. The symptoms seem very similar to both PANDAS and Lyme Disease. Over the last few years, he has had a few exacerbations of: frequent urination, ocd, spitting, agitation, hard time going to sleep, ODD. It got real bad in Fall 2008 and none of the treatments for suspected illnesses (allergies, acid reflux, GI inflammation, etc.) worked. We had to get him scoped since his spitting was so bad. The GI doc found swelling in his arytenoids (airway valves). We still can't explain that, but prednisone and flonase (oral spray) knocked it down. Spitting went away, but symptoms flared a few months later and another round of prednisone barely helped. The symptoms came back in Fall 09 and he was out of school all year. Then things got a little better and he started school this year and he just got antoher big exacerbation a few weeks ago (all symptoms above and all worse this time). He is out of school once again.

 

The strep tests that we took recently are all negative (throat culture as well as ASO and DNASE). And they were negative in yrs past also when we checked. But, since they can be negative with PANDAS, we are currently on Zithromax until we see a PANDAS doc in late Dec.

 

Some of the folks on the PANDAS board have talked about LD. So, I dug out our IGeneX Lyme Panel from 2008. At the time, we were told by our docs that he did not have lyme and I can see why because most of the results were negative and the one positive result was next to a negative result from different group, so that was contradictory. So, we forgot about LD. But, now with everyone being smarter in these areas, I thought I would post the 2008 results below.

 

- IFA titers (B Burgdorferi G/M/A), 1:40 (Indeterminate)

- Lyme IgM Western Blot (all bands negative)

- Lyme IgG Western Blot

-- CDC/NYS Western Blot (negative)

-- IGeneX (showed positive since 2 **bands were positive). Band results:

**31kDa IND, **39 kDa+, **41 kDa +++, 58 kDa + (all other bands negative)

- Lyme Multiplex PCR (B Burgdorferi - serum & whole blood had same results)

-- Genomic (negative)

-- Plasmid (negative

 

I appreciate your thoughts on the Lyme test results and your thoughts on what we should do. We live in Maryland. How do you proceed when you don't know which illness you are chasing. The autism complicates things because as you know there are more issues involved, like my son not being able to tell me what hurts. I should also say that we have another son that is 9 and he also has autism and likely has an infection of some type based on his symoptoms. Thanks for any advice, John L

[Iowadawn]

If I am reading the results correctly, I think there is enough there that warrants you looking for an LLMD. Contact ILADS if you aren't aware of one. There is such a thing as lyme induced autism. Don't know if this in anyway applies. We have a PANDAS son that just recently was found to be positive for Lyme, Babesia & bartonella. Never would have thunk! I am positive & will soon test the rest of the family.

 

Best wishes & prayers. The ODD garbage is the hardest. It just defies parenting skills!

 

Dawn

[Suzan]

Hi, I would recommend running the Igenex test again and seeing a lyme doctor. Some will say see the lyme doc first. Either way, sounds to me like lyme is an issue. Good luck! Glad you had those test results!

 

Susan

[jjl]

Thank you Susan and Dawn.

 

We live in Maryland and I am hearing that Dr Beals is good. I will try to get an appt with him. One question I have is that if you treat Lyme, since they use so many different abx, are you essentially treating PANDAS anyway??? John L

 

 

 

Hi, I would recommend running the Igenex test again and seeing a lyme doctor. Some will say see the lyme doc first. Either way, sounds to me like lyme is an issue. Good luck! Glad you had those test results!

 

Susan

[sf_mom]

John,

 

I think those test results warrants a proper evaluation by an LLMD. Bands 31 and 39 are highly Lyme specific bands. If it is Lyme you should see hugh improvement with some of the symptoms you are currently experiencing.

 

I recommend you purchase Dr. Ann Corson presentation from the ILADS conference on Pediatric Lyme... She is wonderful speaker and I think its only $20.00.

 

Good Luck and I look forward to knowing what you unravel for your boys.

 

-Wendy

[mama2alex]

I agree with others here that you should see a good LLMD asap. But please know that having Lyme doesn't mean he doesn't have PANDAS/PITAND (autoimmune response to strep and/or other infections such as viruses). Ann Corson's presentation, which SF mom suggested, mentions that some of her patients have PANDAS as well. A good LLMD is going to look at all possible infections/issues that might be there along with Lyme - strep, viruses, parasites, mold issues, allergies, immune deficiency, heavy metal poisoning, etc.

 

If you order Ann Corson's DVD off the ILADS site, it is $20. I received mine in a week, and also ordered the presentations by Dr. Harris (discussing treatment options) and Dr. Horowitz (discussing coinfections). Haven't watched them yet, but hope to in the next couple of days and will post my impressions.

 

Best of luck to you and welcome to this forum!

 

All,

 

Just a newbie here asking for some help. I have been on the PANDAS board also because I am trying to determine whether our 10 yr old son has PANDAS issues or Lyme issues. Our son has moderate to severe autism. The symptoms seem very similar to both PANDAS and Lyme Disease. Over the last few years, he has had a few exacerbations of: frequent urination, ocd, spitting, agitation, hard time going to sleep, ODD. It got real bad in Fall 2008 and none of the treatments for suspected illnesses (allergies, acid reflux, GI inflammation, etc.) worked. We had to get him scoped since his spitting was so bad. The GI doc found swelling in his arytenoids (airway valves). We still can't explain that, but prednisone and flonase (oral spray) knocked it down. Spitting went away, but symptoms flared a few months later and another round of prednisone barely helped. The symptoms came back in Fall 09 and he was out of school all year. Then things got a little better and he started school this year and he just got antoher big exacerbation a few weeks ago (all symptoms above and all worse this time). He is out of school once again.

 

The strep tests that we took recently are all negative (throat culture as well as ASO and DNASE). And they were negative in yrs past also when we checked. But, since they can be negative with PANDAS, we are currently on Zithromax until we see a PANDAS doc in late Dec.

 

Some of the folks on the PANDAS board have talked about LD. So, I dug out our IGeneX Lyme Panel from 2008. At the time, we were told by our docs that he did not have lyme and I can see why because most of the results were negative and the one positive result was next to a negative result from different group, so that was contradictory. So, we forgot about LD. But, now with everyone being smarter in these areas, I thought I would post the 2008 results below.

 

- IFA titers (B Burgdorferi G/M/A), 1:40 (Indeterminate)

- Lyme IgM Western Blot (all bands negative)

- Lyme IgG Western Blot

-- CDC/NYS Western Blot (negative)

-- IGeneX (showed positive since 2 **bands were positive). Band results:

**31kDa IND, **39 kDa+, **41 kDa +++, 58 kDa + (all other bands negative)

- Lyme Multiplex PCR (B Burgdorferi - serum & whole blood had same results)

-- Genomic (negative)

-- Plasmid (negative

 

I appreciate your thoughts on the Lyme test results and your thoughts on what we should do. We live in Maryland. How do you proceed when you don't know which illness you are chasing. The autism complicates things because as you know there are more issues involved, like my son not being able to tell me what hurts. I should also say that we have another son that is 9 and he also has autism and likely has an infection of some type based on his symoptoms. Thanks for any advice, John L

[Iowadawn]

Thank you Susan and Dawn.

 

We live in Maryland and I am hearing that Dr Beals is good. I will try to get an appt with him. One question I have is that if you treat Lyme, since they use so many different abx, are you essentially treating PANDAS anyway??? John L

 

 

 

Hi, I would recommend running the Igenex test again and seeing a lyme doctor. Some will say see the lyme doc first. Either way, sounds to me like lyme is an issue. Good luck! Glad you had those test results!

 

Susan

Susan-

 

The two years we have treated PANDAS with abx & hd IVIG we unknowingly have been treating the lyme, etc.--just halfway, per the LLMd. Many of the mvt issues of PANDAS are gone. We are aggressively treating the tick-borne infections, now. Dawn

[philamom]

Most with lyme and/or co-infections will eventually need a cyst-buster antibiotic.

[jjl]

Thank you to all that replied to me. I appreciate it. It sounds like the test results from 2008 warrant a visit to a lyme doc and I will set that up asap. I will also order the dvds you all mention. John L

 

 

Most with lyme and/or co-infections will eventually need a cyst-buster antibiotic.

[lyme_mom]

I agree - an igenex positive igg lyme test plus symptoms is reason to treat lyme.

[MichaelTampa]

As others have said, the western blot looks like lyme for someone with symptoms as you report. As an FYI, a well-known lyme doc, Dr. Klinghardt, believes that 90% of autism comes from lyme, so you might consider the possibility that might take care of itself with proper lyme treatment. (Of course, a lot of DAN! autism treatments are part of good lyme treatment.)

[jjl]

Michael,

 

Thank you for the reply. Even though Dr K believes in the lyme-asd connection, the word is slow to get out. For expl, when we saw peculiar symptoms in 2008 and got the Igenex results, the docs did not think lyme was an issue since the results were mixed (even though there were three positive IgG bands; one being band 39). Since the Igenex was positive and the CDC was negative, it appeared contradictory and therefore viewed as a negative.

 

So, here we are, two yrs later with the same symptoms. But this time, the lyme-asd movement has taken a larger hold and the word is out there more. Thankfully, I was able to schedule an appt with a Dr Beals in Maryland recommended by folks on this forum. I also have an appt with Dr Latimer for PANDAS, so I hope we can rule in or out these issues because our son is still out of school and needs help ASAP. John L

 

 

As others have said, the western blot looks like lyme for someone with symptoms as you report. As an FYI, a well-known lyme doc, Dr. Klinghardt, believes that 90% of autism comes from lyme, so you might consider the possibility that might take care of itself with proper lyme treatment. (Of course, a lot of DAN! autism treatments are part of good lyme treatment.)