Pandas mom positive for lyme

[Iowadawn]

Western blots back for lyme. Both igs were quite positive. Double positives on several bands. On an itouch. More later. Dawn

[KeithandElizabeth]

Wow Dawn! I am sorry that you have lyme, but I am glad that you have discovered it so that you can get rid of it!

 

I would definitely suggest reading The Cure Unknown by Pamela Weintrub as well as Insights into Lyme Treatment by Connie Streisheim.

 

And the ILADs lyme conference is being streamed live from New Jersey today and tomorrow. Dr. Ann Corson was fantastic. She also included PANDAS in her discussion. I would highly recommend renting the video from this conference once it is available.

 

 

Elizabeth

[sf_mom]

So sorry for your diagnoses. I walk this journey with you.

 

I too recommend 'Insight to Lyme Treatment'

Edited October 15, 2010 by SF Mom

[Phasmid]

What exactly are the symptoms that you experience with Lyme? Just wondering, as I am starting to question my own health probs. I have nothing serious except these:

 

inability to lose weight (even while training for 1/2 marathon at about 30 miles per week)

ringing in ear, and loss of hearing with a dx of otosclerosis (have more than 40 % hearing loss)

cracking/crackling in neck, but I know from xray that I have degenerative bone disease that looks like arthritis

sudden injuries to muscles of hands as well as ligament probs in hands

an excruciating stabbing pain in the back of my head that never lasts, and is recurrent about three times per week or less

rage attacks where i fly off the handle at small issues

anxiety, but think related to post traumatic stress of having a PANDAS child!

 

any help, thanks

[Iowadawn]

Phasmid-

 

I think you can have just about any symptom. But the stabbing pain is common.

 

I have started having creaking/rice krispie sounding neck the last 6=8 months

I was sick, sick, sick as a kid

The last couple weeks I have been itchy-hands, feet & back.

I wonder if my menstrual issues are related since when I have been on extended abx I don't have quite the periods from ######.

I do have psoriasis

Our family had/has the strep issues

My heels and feet have been going through a phase of aching/hurting

I don't know if this is related-I had a vitreous detachment (sudden--it normally happens over time as you age) 4 years ago. lots of floaters. Some still present. On this same side, I have noticed my one eyelid has gotten a bit droopy.

Now--wish I could say my inability to lose weight could be somehow tied to EXERCISE!

I now am thinking that the HELLP Syndrome I experienced that precipitated my son's need to be delivered early may somehow be related to this. I was sooo yucky for the longest time after his birth. I barely kept going. Then I think a good post partum depression set in and I tanked. The mood thing can be an issue with me, too.

 

Right now I don't have any really bothersome symptoms, though.

 

All for now. Dawn

[philamom]

Phasmid- Ringing in the ear is very common in adults with lyme.

 

Dawn- I also had HELLP syndrome during pregnancy. Also had severe pain with my cycles for the last 4 yrs. I thought for sure I had ovarian cancer -- ran tons of tests including ultrasounds & cat scan. Doctors could never figure it out. I eventually lost my cycle--no more pain! But the doctors said the pain I was describing was not likely due to pre-menopause/menopause. I dunno.

[sf_mom]

Philamom: Did you hear them speak about women with pevic pain during conference?

 

Dawn: AND, yes the weight issue can be the result of Lyme both gaining and losing, it can alter your thyroid either way.

 

My symptoms are currently mild and may have an easier time with recovery/treatment as result. Today: pelvic pressure, manageable joint pain depending on moment, mild headache. I definitely have more energy since starting treatment... and I thought it would be the opposite.

 

For anyone, with any doubt about their own health please just run the basic WB via Igenex ($260.00)... you might not have issues now but in 10 years you could be a mess.... I don't need to name the list.

Edited October 16, 2010 by SF Mom

[Phasmid]

Oh my,

 

among the others listed below in my post, I have an eyelid that droops nearly closed several times per month. My doc had no explanation except that a small stroke may have occurred (no way). Hmmmm...

 

My son is pos. on band 41 by western blot through regular lab (westcliff).

 

 

[sf_mom]

Phasmid: If you were to test for Lyme again.... I would definitely test yourself first and then follow with provocation DNA testing for your son. Two of our three children are positive for band 41 only via Igenex (this is an antibody test) and we found the DNA for Lyme via provocation testing. I understand being band 41 positive only is similar to other cases of Congenital Lyme. Oftentimes a child with Congenital Lyme Disease does not make antibodies because it does not recognize the bacteria as foreign and therefore would be negative for any type of antibody testing (current industry standard tests). They spoke often about individuals that are sero-negative (don't produce antibodies) yesterday during conference...

[Iowadawn]

I am wondering if having been on so much abx helped draw out the Bb so our WB were more positive. I had some double positives and a couple IND on lyme specific bands, along with the band 41.

 

SF-Did you have problems with herxing?? My fear is that I need to be on top of things when Evan is like this or worse.

 

Dawn

[sf_mom]

I'm doing much better than I thought a I would. I have periods or moments during the day that I don't feel well but its easily recoverable with motrin or a short nap. Apparently, deep REM sleep/nap during the day is not good... and should limit a nap to 1/2 hour. I would agree because sometimes too long of a nap makes me crabby and my brain fog sets in for the rest of the day.

 

I recommend drinking a 1/2 cup of bentonite clay every night before bed prior to starting treatment. I've doing this since last Jan. and I think its helped with the toxin load.

 

Are you mostly IgM or IgG positive?

Edited October 17, 2010 by SF Mom

[matis_mom]

I am sorry to hear to see the "lyme mothers with pandas kids" club increase its membership!

 

It is amazing to see everyone is having all these little symptoms. Things that come and go and then when you see someone else's list, you are like, "Oh, I get that too!"

 

Like, I hadn't thought of this before, but I do get "floaters" and I've been having pain in my ovaries every now and then. I also clearly remember a couple of instances of feeling really dizzy for no particular reason. And the ear thing, I get that too. And the creaky/cracky neck thing.

 

And I also think Lyme explains why we keep getting strep and/or are unable to clear it.

 

It kind of helps understand what our kids are going through. I keep thinking if it wasn't for them, I probably would have never made the Lyme connection for myself.

 

We will all get better, together.

Edited October 17, 2010 by mati's mom

[smartyjones]

i think i remember Klinghardt saying in a video or in something i read -- but i disclaim that it was a while ago -- when speaking about lyme in autism, that he believes if the mom is infected, there seems to be more of a load that gets passed to the first child. so in practice, when the first child (as opposed to subsequent children) has more symptoms, there seemed to be more incident of the mom's infections also being involved and being more of a congenital issue versus the child having been infected after birth.

 

i am curious about this b/c it's my second child who is pandas. my first child has ever-so-slight things that i often question if it's 'just normal 8 yo' or if something else.

 

any thoughts on this?

[matis_mom]

i think i remember Klinghardt saying in a video or in something i read -- but i disclaim that it was a while ago -- when speaking about lyme in autism, that he believes if the mom is infected, there seems to be more of a load that gets passed to the first child. so in practice, when the first child (as opposed to subsequent children) has more symptoms, there seemed to be more incident of the mom's infections also being involved and being more of a congenital issue versus the child having been infected after birth.

 

i am curious about this b/c it's my second child who is pandas. my first child has ever-so-slight things that i often question if it's 'just normal 8 yo' or if something else.

 

any thoughts on this?

I had never heard of that, but I can tell you we have some very good friends whose first child is severely autistic. Second child mild Aspbergers, but doing very well currently. I just saw the dad yesterday and he had never heard of Lyme induced Autism. Hopefully the seed I planted yesterday will eventually germinate. It is so hard with parents that have already done so much for their children to throw something else at them.

[Iowadawn]

I'm doing much better than I thought a I would. I have periods or moments during the day that I don't feel well but its easily recoverable with motrin or a short nap. Apparently, deep REM sleep/nap during the day is not good... and should limit a nap to 1/2 hour. I would agree because sometimes too long of a nap makes me crabby and my brain fog sets in for the rest of the day.

 

I recommend drinking a 1/2 cup of bentonite clay every night before bed prior to starting treatment. I've doing this since last Jan. and I think its helped with the toxin load.

 

Are you mostly IgM or IgG positive?

 

 

Wendy-

 

Here are my WB results:

 

Western Blot IgM: POSITIVE: Band 23 (IND), 31 (++), 39 (IND), 41 (+)

> Western Blot IgG: POSITIVE: Band 31 (++), 34 (IND), 41 (++)

>

 

About the same, I would say.

Dawn

 

IgM vs IgG?? Too lazy to look right now.

Edited October 17, 2010 by Iowadawn