Another PANDAS mom with Lyme

[momcap]

I just got my Igenex results and I think I am in shock. I'm not surprised. I told the doctor I expected a positive IgM. But I'm totally shocked, if that makes any sense. Here they are:

 

IgM - positive

24-25 +

31 IND

41 +

 

IgG - negative

30 +

39 IND

41 +++

58 ++

 

I would appreciate any/all comments to help me get my feet back under me. What does this mean? What do I do? My PANDAS DS7 has a completely negative Western Blot - no bands at all. But I have had so many lyme symptoms and see symptoms in all 3 of my kids (7,5,4). I figured it made sense to test myself first. Obviously I need to get to an LLMD and I have heard of one in Canada. So I will be contacting him first thing in the morning.

 

Wow, still in shock.

[sf_mom]

You'll need to check for co-infections. I remember thinking you had a lot of symptoms. I am so glad you were able to find a Dr. that treats in Canada. Did you only check the PANDAS child for Lyme? Did you have symptoms prior to pregnancy? If so, did it get worse with pregnancy.

 

There are many mothers currently going through treatment so we'll be happy to help. We were all very fearful of the potential herx and most were surprised to find 'it wasn't so bad'.... Hang in there. I remember finding out as well. I was stunned but relieved to have answers for our entire family.

 

Please keep us updated.

 

-Wendy

[momcap]

You'll need to check for co-infections. I remember thinking you had a lot of symptoms. I am so glad you were able to find a Dr. that treats in Canada. Did you only check the PANDAS child for Lyme? Did you have symptoms prior to pregnancy? If so, did it get worse with pregnancy.

 

There are many mothers currently going through treatment so we'll be happy to help. We were all very fearful of the potential herx and most were surprised to find 'it wasn't so bad'.... Hang in there. I remember finding out as well. I was stunned but relieved to have answers for our entire family.

 

Please keep us updated.

 

-Wendy

So I guess it's back to Igenex for the co-infections panel. Yikes, I'm going broke. Yes, I only tested the PANDAS son, and not through Igenex. It was just a standard WB. Yes, I had symptoms before pregnancy, starting in my early teens I think. I had a PANDAS-like syndrome, maybe it was lyme all along? My first pregnancy (with PANDAS DS) was brutal. I had spotting for months. I was puking for 7 months, ended up on IV fluids at 5 months. I had a mental breakdown at 7 months. I had what I called "pregnancy brain" so badly that I shouldn't have been allowed to drive a car, or leave my house. One day I went to the mall and then couldn't remember how to lock my car doors. I sat in the car crying because I couldn't go shopping without locking my car, but I couldn't lock my car. So I went home. It sounds idiotic now, I can't believe how "impared" I was. I had high blood pressure during the last month and started gaining more than a pound a day (went from under 130 pounds at 5 months to almost 200 pounds at delivery). Labour was long, 48 hours+ and DS needed oxygen when he was born. My second pregnancy was normal, and the third was somewhere inbetween. Same with my kids - first one is brutal , second one is pretty normal, third one is somewhere inbetween.

 

DS7 is already herxing, I guess. He's been on one antibiotic after another since August for elevated strep titers and positive throat cultures, sinus infection, etc. Augmentin last month was unreal. He was a raging lunatic the entire time he was on it, complete with all sorts of pains. Biaxin this month is all over the place - good, bad, ugly. All day today he told me he's not taking any more medicines because they make him feel so bad in his head. I guess we'd better hurry up and see an LLMD. I asked my doc for the referral (need to be referred here in Canada). I'm hoping he does it right away.

 

I haven't decided whether or not to pursue treatment for myself. I'm doing okay. Not sure I want to rock the boat.

[sf_mom]

I can relate to your story!!! I remember having such memory problems while pregnant... One time, I had to pull the car over because I didn't remember where I was going. It was a very strange feeling and similar to not knowing how to lock the car door.

 

Anyway, I'd get to that LLMD first before any additional tests that might be inconclusive.

 

Again, wishing you all the best and we'll be here when needed.

 

-Wendy

[Suzan]

Hello and big HUGS! No one wants to have lyme but if you've got it you want to know! Starting treatment has been very good for me and for my family. I don't recommend holding off on treatment for yourself unless the LLMD decides that you are in remission. I got bad FAST when my lyme was triggered in June. We will be here for you through the hard times and like Wendy says we can have a party when we are all well!

 

Your IgG says negative but it looks pretty close to positive to me too. I agree that a trip to an LLMD is needed before any more testing so they can guide you.

 

Susan

[momcap]

Thanks for the warm welcomes! I'm going to call my doc again today about that referral, and keep bugging him until he gets it done. Susan - I was also wondering if my IgG was pretty close to positive. I'm not sick now, though I have had challenges in the past, both mental and physical. I'll discuss it with the LLMD and then decide what to do. Wow, I'm still stunned, even though I've been convinced it is lyme for a while now.

 

I know there is a lot of controversy between Lyme & PANDAS on the board. I, for one, am thankful that both sides are passionate in sharing their personal experiences. I'm sorry about the bad feelings, but reading through those passionate threads has really helped me to learn about both PANDAS and Lyme.

[PacificMama]

Momcap,

 

Glad you are finding answers. I'm not sure how you got the llmd referall, but I think I also posted to you about resources for finding (in the helpful links posted above). Also CanLyme association -- and their are Canadian support groups listed on lymenet.

 

Best of luck... look forward to hearing updates.

 

Mary

[lyme_mom]

I just got my Igenex results and I think I am in shock. I'm not surprised. I told the doctor I expected a positive IgM. But I'm totally shocked, if that makes any sense. Here they are:

 

IgM - positive

24-25 +

31 IND

41 +

 

IgG - negative

30 +

39 IND

41 +++

58 ++

 

I would appreciate any/all comments to help me get my feet back under me. What does this mean? What do I do? My PANDAS DS7 has a completely negative Western Blot - no bands at all. But I have had so many lyme symptoms and see symptoms in all 3 of my kids (7,5,4). I figured it made sense to test myself first. Obviously I need to get to an LLMD and I have heard of one in Canada. So I will be contacting him first thing in the morning.

 

Wow, still in shock.

I agree with SF Mom. See a llmd first so you dont waste a lot of money on tests you might not need. You should get a cd 57 test from labcorp. It can give u an idea of how sick you are with lyme if u r at all. WIth that history I would definitely want to treat. I felt ten years younger after treatment so it can make a real difference in your life. I would worry about untreated lyme and what it can do to you down the road. The tests are just clues in a clinical diagnosis. Energetic testing can be reasonably priced and offer more clues as to what the unique issues are for each person in the family (ie. coinfections, yeast, heavy metals, etc.).

[kmom]

I completely understand the shock of it all. I knew when I investigated Lyme for my PANDAS kids that it was possible it stemmed from me. I didn't voice it to0 much to family and friends b/c I feel like people would think I was looking for a valid reason as to why this happened to my kids or that I was overgeneralizing that most of the world has Lyme. But after reading about Chronic Lyme symptoms, red flags were raising left and right. Aside from the red flags, I got sick--"bad very quickly" as Suzan described after my flu vaccine this fall. It was light turning on a light switch. I was told by Dr. J's office manager, a retired psychologist from the PA Lyme Organization and my LLMD that people w/ Lyme should never get the flu vaccine but I had no clue I had Lyme! In hindsight, I am grateful something pulled it out of me to make me get treated b/c I do wonder about the diseases down the road that set in due to Chronic Lyme. And as clear as the possibility of Lyme seemed in my brain fogged head, I remember how I teetered between an appointment w/ an LLMD and Infectious Disease Dr. I think b/c I kept much of the symptoms to myself and suffered in silence w/ this latest relapse, my mom was telling me I was just burnt out from sick kids and I needed more rest. But I knew it was more. I did have a consult w/ an inf. disease dr. He was concerned w/ all these symptoms happening suddenly and at once. But, he wanted to scan/test/rule out diseases like MS, arthritis, chronic fatigue syndrome and fibromyalgia...all of which scared me. Who knows what he would have Rx'd me? Probably anti-inflammatory drug and sleep meds. Not that Chronic Lyme isn't scary but if Lyme and co-infections are the culprit leading the inf. disease dr. to believe I could have one or more of those diseases mentioned above, I wanted to treat the underlying cause, not spend a lifetime treating the ugly symptoms which could very well worsen with time. So I decided push ahead with the LLMD treatment after a clinical dx and I have seen progress.

 

2 wks after starting treatment, my LLMD sent a bunch of test results in the mail. I was reading them to my mom over the phone as I flipped throught them. I read that my DS's CD57 was 38. I didn't see my score in the pile. After going through it again, I realized my name was at the top of the paper for the 38 value of CD57! (brain fog!) I said, "Oh mom, that's my score." I don't know why but I almost started to cry. I was shocked. Like I knew it was happening; I felt the disease daily but reading it on paper was much more real. I swear I went through the next 12-24 hrs. in shock. How could reading it make me feel worse than I already had felt physically?! It was strange. But I snapped out of it quickly. I decided it was better to know and get movin' on fixing it rather than dwelling on it. And not that I am thinking more clearly, I am actually excited to have explanations for weird symptoms I've felt for a long time. They stem all the way back to my childhood when I too had PANDAS-like symptoms. Started off w/ Scarlet Fever then chronic strep and eventually separation anxiety and OCD but not as debilatating as my children. And the funny thing is, I managed it well enough that friends today never believe I was shy or anxious as a child. They never believe my mom when she says I was the kid glued to her leg, cried w/ stomachaches when I was dropped off at soccer practice fearing they'd forget to pick me up. My parents called me a "Wory Wort"! But as I got older I broke that mold. I was the the one who went away to college, did my school work but also lived for partying and having fun.

 

I agree w/ the others here that I'd get to an LLMD before spending more $ on tests. Hopefully your LLMD will be sensitive to the money spending factor w/ Chronic Lyme and help find ways to test that aren't too expensive. My LLMD didn't have me do an Igenex test. He didn't see the point. I had the symptoms, 2 kids w/ it and did other tests that my ins. covered. I am curious to hear what he says about treating you...whether you wait till you feel symptoms (which you might already and you aren't recognizing as Lyme) or start treatment. I was under the impression that most don't treat until symptoms arise.

 

Good luck and keep us posted!

 

Kristie