posted
I'm a 39YO male living in MA. I have some questions I'm having trouble finding answers for...
How quickly do physiological symptoms appear after the onset of Lyme Disease and how quickly to they "ramp up". I have been slowly feeling worse and worse over the course of about a month. The symptoms I'm having right now are as follows:
Numbness in extremities (especially upper legs) after even mild exercise. Numbness in face (both sides) and lips. Tongue feels "odd" or heavy. Dizziness after mild exercise and/or stress (sometimes accompanied by blurred vision). General aches, especially neck, back of shoulders, and arms. I'm fairly ache-free when I wake up, but it gets worse and worse as the day goes on. By night, I'm very uncomfortable. Tender neck (my glands felt swollen a couple of weeks ago, but that seems to have gone down, but I find my self often gently rubbing the sides of my jaw because it "doesn't feel right".) Fatigue "Warm" feeling in my upper torso (hard to describe... it's like my insides feel warm) Brain fog (I just feel "out of it") Mild tinnitus Increased constipation (not bad as I normally tend to have a soft stool, but the change is noticeable to me)
Right now I really don't want to get out and do much of anything. The dizzy spells and numbness of course have my concerned (to the point where I think I have anxiety related symptoms on top of this).
As this was increasing a couple of weeks ago, I thought it might be thyroid related (I'd had half of mine removed earlier in the year). My TSH is higher than it was pre-surgery, but still not very high. Although to ask the question on the thyroid boards, they react like the people here do... the Dr.'s don't know what they're talking about and the tests they run only tell part of the story. I tend to think that there's a wee bit of "When all you have is a hammer, everything looks like a nail".
Anyway, I don't recall ever having a tick bite, rash, or bullseye though I know that's not at all uncommon. I did spend a decent amount of time in grassy fields this past summer.
I met with my PCP last week. His very first thought was Lyme and second was heart disease. He ran the "standard" blood test for Lyme which came back negative. After reading this board (and other places) that doesn't seem to mean much. I haven't talked to him again and the only info I have is the test came back negative (that was a couple of days ago).
Next week I'm scheduled for a nuclear stress test to answer the heart question (since LD came back "negative"). I'm happy to have it because I'm slightly overweight and although I eat pretty well, I don't exercise as much as I should and heart disease runs in the family, so I'm not ruling out a heart problem (though only a small number of the symptoms I'm having would point to a heart problem and I'm still fairly young).
So, assuming the heart test comes back A-OK, what questions do I need to ask my PCP regarding Lyme? Sounds like I should push for Western Blot test, right? Anything else? I know I'm asking this on a Lyme board, but do these symptoms point to anything else?
Thanks!
Posts: 5 | From MA | Registered: Nov 2008
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bettyg
Unregistered
posted
welcome meister,
no problem; lyme causes these 4 major areas: heart, lungs, kidney, and brain problems!!
yes, i'd have IGENEX, CALIF. western blot igm/igg blood test drwn and sent there. read my detailed info in my newbie package link below for that using my table of contents.
sorry, i've got to go work on supper now, but here's more basic info for you, and a great link there on SERO NEGATIVE you can find in table of contents and then go to it!!!
great posting w/details galore for us!! and broken up.... below doesn't apply to YOUR broken up post.
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @ http://www.ilads.org/burrascano_0905.html suggests that you discuss with your doctor continuing treatment until you are symptom free for 2 months.
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying; so specific titles get our time/replies. non-specific ones, i sob, scroll on by!
Also, please be very specific in the subject line what you will be discussing so more people will be able to assist you.
***************
please go to my newbie links, copy the entire thing, and then print this off....
financial burdens compiled by melanie reber pages 74 - 92; outstanding info there.
also in my table of contents, for FINANCIAL BURDENS, i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences. thoughts and prayers headed your way..
Betty's POSTING GUIDELINES
When you post or reply, please break up your solid, continuous block text welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
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adamm
Unregistered
posted
Definitely sounds chronic Lyme, unfortunately, which you'll need an LLMD to have any chance of putting into remission.
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You can call them and order a kit for free. Take it to your PCP early in the week ( or a local lab .. with dr's orders ) and then send in the $$$ with the kit.
Don't know for sure (I'll ask when I see him next week), but I suspect that was it. The blood work was taken on Monday and the results were in by Wednesday if that's any hint.
Posts: 5 | From MA | Registered: Nov 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
You can also get tested for HHV-6, EBV and chlamydia pneumonia.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
I keep reading and learning. Thanks for all of the feedback.
I've read several times people mention "migrating pain". What exactly does that mean? Right now I've got a pain in the left shoulder. It's been getting worse all day. Yesterday it was my right shoulder. Sometimes it's one of my arms. It doesn't see to have any rhyme or reason. Is that similar to what people are talking about?
Posts: 5 | From MA | Registered: Nov 2008
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posted
Confirmed... the blood test that came back negative was the ELISA test. They don't do the Western Blot test unless the ELISA test comes back positive.
I've ordered the test kit from IGeneX, so I'll have that when I talk to my PCP. I think just based on symptoms, I can get my PCP to recommend a Western Blot test (I hope) and then I'll go from there and do the IGeneX thing as the next step.
Do the symptoms come and go with most people? I felt pretty reasonable today (other than the migrating pain that continues to jump from shoulder to arm to my other shoulder on successive days). No dizziness or numbness over the past few days. The neck pain has eased a little. But last night I had a new one (or maybe I had it before, but just didn't realize it). I was a little hypersensitive to noise. Not horribly so, but enough that it was bothering me. I could watch TV fine, but someone tapping their foot, or scratching, or other such noises seemed really amplified and grating. That kind of thing doesn't normally bother me.
Posts: 5 | From MA | Registered: Nov 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Meister - Yep, it's normal and happens quite a bit in lyme for people to go from having an okay day one day to have a horrible day the next, or having a few good days and then a few bad, etc., etc., etc. It's a long, awful roller coaster ride!
And yes, the jumping/migrating pain you are having sounds exactly like what lyme does.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.![[Wink]](wink.gif)
otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
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