Should I get tested?

[JenniferG]

OK,so here goes..........you know my PANDAS/Lyme story with my 3 children. Well, a light went off yesterday....I have been chronically ill. Even in my late teens early twenties, I was always "sick". Now, I am battling fatigue, joint pain, anxiety/depression. Last year I saw a slew of MD's and nobody could figure out what was wrong...my HgbA1C was elevated..but no diabetes, they thought I had a parathyroid disorder..scans were negative, carpal tunnel, knee problems, ankle pain in the AM, the list goes on. I have these little red cysts on me...which I just realized is attributed to Lyme. Should I get tested. Or, am I in the stage of diagnosing my kids where you seem to see "it" in everyone???

 

Any comments/suggestions would be helpful....even if it's to tell me to stop reading!!

 

Thanks.

 

Jen

 

Oh yeah, the kicker, I have been on and off abx for sinus infections a lot this fall/winter. I am currently on Azith since Mond. ON Tues...I was WAY worse..high anxiety, cranky, exhausted and joint pain. Was that a herx? Because yesterday and today I feel great!!

Edited April 7, 2011 by JenniferG

[MichaelTampa]

The combination of your symptoms and kids' situation would strongly suggest lyme treatment for you. Not sure what the reason would be for testing, I would think treatment would be justified regardless of any test results. Can you just go to the same doc you're using for the kids? If so, I would get to the doc and ask for treatment, let the doc determine if they think any testing is needed ... perhaps related to coinfections, perhaps not.

 

Yes, could be herx.

[momaine]

I'm in the same boat. I couldn't decide if it was my brain making connections to Lyme because of my dd's diagnosis or if all my random symtpoms are truly from Lyme and not just old age. My symptoms are, Plantar Fasciitis (no change in 1.5 years and 3 cortisone shots later), short term memory loss, my thermostat is broken...I can't get warm, and most recently, joint pain that came on out of nowhere and sometimes radiates from my ankle to my knee and also in my elbows, mostly. Plus my toes fall asleep and get all tingly and I get these pains in my muscles that feel like someone is sticking a needle into me. (seems like there are more symtpoms, but I can't remember what they are right now)...oh yeah, I just read about this and didn't know it was a lyme symptom, but I get electric shocks all the time. Strong ones, that hurt.

 

I did Igenex testing recently, but not through a Lyme doc. My results were negative, but with a positive 31 on both IgG and IgM as well as 41 IND and 45, I think. The 31 is Lyme specific. A dr. who is not a lyme specialist has started me on 100mg of Doxy BID based on my symptoms and I'm feeling a bit worse just a few days into it. It is not a dose that is typcially high enough for Lyme but if my stomach handles it okay, he'll raise it in a couple of weeks. Meanwhile, I'll see a lyme specialist and see what she has to say. I'm interested to know what she'll think. Am I crazy and just getting old or could it be Lyme. I'll let you know.

 

 

I'm tired of everything hurting.

 

(I edited my test results because 41 was IND, not positive, as well as 5. I mistakenly wrote positive.)

Edited April 9, 2011 by momaine

[kmom]

You sound like me. As I researched the symptoms for my kids, I kept thinking I had some of them but it was just coincidental. Unlucky/lucky for me I ended up getting a flu vaccine and that mixed w/ stress from sick kids sent me over the edge and my quiet Lyme became an active full blown infection. It was shocking b/c I had always felt really healthy and suddenly I had major deep bone pain, sore soles of feet, those electrical currents from elbows to hands, tingling and numbness in fingers and toes, felt cold all the time and even if body was warm, my hands and feet were freezing, I was exhausted, brain fog, neck/back pain, etc. On one my worst days my arms felt like they weighed 100 lbs. and were so heavy to lift. It was bizarre to say the least!

 

I've learned from all this to listen to you insticts no matter how crazy it seems. I felt sick within days of starting Doxy. Our LLMD didn't put me thru extensive testing. The kids had already had Igenex testing done and there was no point to wait for weeks for test results while I was suffering. I had my reg. Dr. do a WB by Quest and of course it was negative! But our LLMD knew by my symptoms, history and my kids being sick that Lyme was likely the culprit and he began treatment. He did have me go for a CD 57 test which was a 38 and he felt indicative of Lyme. He had me fill out of a symptom chart and by the way I answered, my dx'd seemed to be Borrelia and Bartonella but Babesia seemed more unlikely. It was the same dx my kids had already gotten.

 

I would definitely see an LLMD so he can help you figure it out.

[sf_mom]

Presence of band 45 is often an indication of Ehrlichiosis as a co-infection. Sorry I don't have link right now. It will be interesting to see what they eventually find.

[momaine]

Presence of band 45 is often an indication of Ehrlichiosis as a co-infection. Sorry I don't have link right now. It will be interesting to see what they eventually find.

The vets in our area are finding a lot of Ehrlichiosis in horses. Interesting.

[sf_mom]

Well that is kinda scary..... Good news is its fairly easy 'as a co-infection' to eradicate.

Edited April 9, 2011 by SF Mom

[momaine]

Well that is kinda scary..... Good news is its fairly easy 'as a co-infection' to eradicate.

Do you know off the top of your head what they use to treat Ehrilichiosis? (sp)