I am going back to the Rheum. this week to go over the WB results. I'm certain she'll tell me I"m fine (which all docs tell me) since only band 58 came back reactive. I do have some other questions that I"m hoping someone has experience with.
First, is it common for females to have cycle problems with lyme? I haven't been getting mine regularly and just had hormone tests done last week that came back normal. My ob/gyn is now testing my pituatary gland.
Also, I have what I like to call my "bacon sizzle", which I've had for several years now. Most docs look at me like I"m crazy, but I have this sizzling noice that starts at the base of my skull and travels up the back of my head, about half way up. I liken the noise to the sound of bacon sizzling and/or an electric shock sound. I can feel it and I can hear it. I know it sounds crazy, but has anyone else had that?
Posted by troutscout (Member # 3121) on :
Yep...Yep.....Yep.
Had something....similar to the bacon.
Trout
Keep the faith....you lymie.
Posted by TexLyme (Member # 5640) on :
so what was your bacon sizzle? did they ever figure it out?
Posted by riversinger (Member # 4851) on :
I can't address the bacon question, haven't had that.
But as far as Lyme's effect on the hormonal cycle, I've had it all!
Everything is worse premenstrually, which for me lasts two weeks. I've been on natural progesterone to manage some of the symptoms (migraines, swelling, fibroids, etc.), but this month seems to be off again.
Unless your rheumie is familiar with treating Lyme, you are unlikely to get much help. What lab did they do your test at?
It would be worthwhile to be evaluated by a well recommended Lyme doctor. If you post in seeking a doctor, someone will send you some recommendations.
Posted by TexLyme (Member # 5640) on :
My Rheum. used Quest lab to do the WB, but I already have the Igenex test. Just need her to sign off on it this week. I also have a LLMD here in Houston and will call today to get an appt. Just trying to put everything together. Will have the pitutary blood tests this Thursday.
Posted by BW Houston (Member # 5085) on :
Glad to know you are going to see Dr. H in Houston.
BW
Posted by lla2 (Member # 2364) on :
the bacon sizzle is neuro lyme....plain and simple..it's in your brainstem...and your spinalfluid and brain..sometimes it vibrates and gives you that sensation. I get it when i'm herxingl..
don't believe the bloodwork...you have lyme
lisa
Posted by riversinger (Member # 4851) on :
It's possible that you'll get more clear test results from Igenex. They use more expensive materials and a different strain to prime the test than most of the regular labs do. That's also why it costs more to get tested through them.
I think the LLMD is your best bet. Hope it goes well.
Posted by ArtnSoul (Member # 4561) on :
My symptoms/herxing coincides with my menstrual cycle. I too have about two weeks out of the month that I feel worse than I usually do.
I have the "bacon sizzle" that you described. Mine feels like an electrical shock/vibration in my brain. Very disturbing feeling.
Before my diagnosis, I told my PCP - and he looked at me like I was nuts!! I have since found out that it has something to do with having neuro lyme.
Posted by Carol in PA (Member # 5338) on :
Rgarding the "sizzle," I sometimes get something like that, it only lasts for a couple seconds. No pain involved, no electrical shocks, no vibrations.
It sounds/feels like tiny bubbles traveling up through the spinal fluid.
How long does it last for you? What position are you in when it happens?
This may sound weird but I keep having this weird symptom.On a weekly basis I have a sizzling twitching kind of sensation go down the back of my neck almost a electric current that last for a few seconds the crazy thing is I can hear it cracking as it is doing so I thought maybe I was just hearng it internally.Well I had my husband lay his ear on my neck one time when it was doing it and said he could hear it also.I know I am weird but this is really weird.Has anyone had this before or would any of you have a clue what it is.Thanks and have a great day. "
Posted by TexLyme (Member # 5640) on :
Thanks for all the responses. Glad to know it's not just me! What I don't get is why all the docs I"ve ever told never investigate further! I'll let you know what the Rheum says tomorrow! I'm sure she's going to tell me to keep taking the Prednisone.
Posted by TexLyme (Member # 5640) on :
for Carol in PA:
my sizzle only lasts for a few seconds and travels up the back of my head, about halfway up. I can hear it and feel it.
Thanks for the links. I get mine every OTHER month and just had hormone tests last week that came back normal. Thyroid test was normal too. This thursday they are checking my pitutary gland. Won't it be funny if Igenex comes back positive and that's what's making me all wacky! I'm so sick of docs!
