About two weeks ago I came down with the shakes throughout my entire body that lasted about an hour. I thought that was the end of it except the next day I woke up with pins/needles/pain in my forearms and hands that progressed to my calves/feet over the next couple of days. I also got a cold sensation in my extremities. Then it progressed to my head with a fuzziness/sinus infection/migraine feeling. Also woke up a couple of times in the middle of the night with sweats. My right eye began twitching off and on, together with fatigue. went to ER and bloodwork came out fine - was told to get lyme and thyroid tests. Went to primary doctor who said my symptoms were asymptomatic for lyme though he did send me for the blot and thyroid, which both came back negative. I didn't request the band specific info which I will do now to see what it says...though I'm still not sure what to look for. I am feeling worse after two weeks instead of better w/no treatment in sight. Now I also have stiff neck/shoulder issue, muscle soreness and ringing in my ears, which I have to take Advil for. My balance seems off too, and I'm woozy/dizzy a lot. Do my symptoms sound like lyme?
I live in RI which is lyme central. I don't go outside much but this summer in July, about 3 months ago, went to Maine hiking on trails, then in August we went hiking in RI and got lost in some tall grasses (though I did have tons of deet repellent on w/shorts). My husband I searched each other for any sign of ticks, washed clothes and immediately showered...no rash or anything ever appeared.
Any advice would be so appreciated at I don't want treatment delayed should I have lyme. I've never had symptoms like this before - my extremity symptoms really concern me. I am prone to migraines but this seems different - more like a sinus infection in my head with throbbing/ringing. I'm scared
[ 07. November 2006, 10:52 PM: Message edited by: Twinklette ]
Posted by tothepoorhouse (Member # 8595) on :
Twinklette, it could be lyme but it could be other things. Since you went to the ER, I guess it's good it's nothing life-threatening. Take that so you can sleep.
I've heard the best labs are Igenix and MDL. Ask your doc to run these tests ...or go to Seeking a doc on the main page for your state.
I hope it's not lyme or anything else. But you won't know until the tests are done and you find the right doc to diagnose you.
We're here if you need us. Posted by Lymetoo (Member # 743) on :
Be sure to get checked for babesia. Several of your symptoms point to that. Most who have babesia also have Lyme....so get checked for both!
I would suggest getting tested through Igenex Lab in CA. www.igenex.com
You will need a dr willing to order a test kit from them. They also test for babesia. Quite often the coinfection testing, such as babesia, comes back negative and yet the patient has it.
I think the test covers 3 strains of babesia, when there are many, many more than that.
About two weeks ago I came down with the shakes throughout my entire body that lasted about an hour. I thought that was the end of it except the next day I woke up with pins/needles/pain in my forearms and hands that progressed to my calves/feet over the next couple of days.
I also got a cold sensation in my extremities. Then it progressed to my head with a fuzziness/sinus infection/migraine feeling.
Also woke up a couple of times in the middle of the night with sweats. My right eye began twitching off and on, together with fatigue. went to ER and bloodwork came out fine - was told to get lyme and thyroid tests.
Went to primary doctor who said my symptoms were asymptomatic for lyme though he did send me for the blot and thyroid, which both came back negative.
I didn't request the band specific info which I will do now to see what it says...though I'm still not sure what to look for .
I am feeling worse after two weeks instead of better w/no treatment in sight. Now I also have stiff neck/shoulder issue, muscle soreness and ringing in my ears, which I have to take Advil for. My balance seems off too, and I'm woozy/dizzy a lot. Do my symptoms sound like lyme?
I live in RI which is lyme central. I don't go outside much but this summer in July, about 3 months ago, went to Maine hiking on trails, then in August we went hiking in RI and got lost in some tall grasses (though I did have tons of deet repellent on w/shorts).
My husband I searched each other for any sign of ticks, washed clothes and immediately showered...no rash or anything ever appeared.
Any advice would be so appreciated at I don't want treatment delayed should I have lyme. I've never had symptoms like this before - my extremity symptoms really concern me.
I am prone to migraines but this seems different - more like a sinus infection in my head with throbbing/ringing. I'm scared
Welcome twink to the board. You've gotten good advise above. I'll send you my private message, PM, of 19 pages of newbie links/advise which includes detailed info on Igenex testing and long list of symptoms. So be sure to look for those topics ok! good luck, Posted by hardynaka (Member # 8099) on :
It does look like lyme and babesia to me. But as others said, it could be something else too.
Stiff neck though was one of my first symptoms.
Hope you'll get some good tests or start preventive treatment soon. If it's lyme, the fastest the best.
Good luck, Selma
Posted by shazdancer (Member # 1436) on :
Sounds quite symptomatic for Lyme to me. I had tingling up to both shoulders, with Lyme disease confirmed by blood test.
Try the Seeking a Doc section of the forums, and see if you can find an expert to evaluate you. Lyme is a lot more than a rash and a swollen knee.
Hope you feel better, soon!
-- Shaz
Posted by AZURE WISH (Member # 804) on :
Like others said they are possible lyme symptoms but unfortunately lyme and and the symptoms of many other symptoms overlap.
Ticks can be very very small so sometimes people get bit and dont know. Many people with lyme never get a rash.
You should go to a lyme literate dr. If it is lyme they are your best bet at getting diagnosed and treated adequately....and the only way many of us get better. If it is not lyme than this is also the best way to rule it out.
If you post on seeking a dr please include where you are and where you can travel to. Someone will private message you with a drs info.
Please make sure your pm is enabled cuz we do not post drs names on this board due to political issues.
Best Wishes
Posted by Twinklette (Member # 10563) on :
Thanks everyone, will do. Just found out that there is no LL dr. in RI so I'm quite upset about that Is there any way I can convince my primary care to get my bloodwork done and sent to Igenex and is that covered by insurance? Also, how do I specifically request the right tests? I tried to figure it out on the website but it's confusing.
If I request my lyme testing I had done that came back negative, will I be able to see the bars that were tested with the individual results?
Who knows if I even have it, but I don't want to let it go as I've been symptomatic now since 10/21 and fear if I don't get on antibiotics soon I could end up with major issues down the line.
Is there any way you can request amoxicillin NOW in case it might be lyme to prevent further progression? How long do you have before it becomes chronic with longterm issues?
thanks again, so happy to have found this board.
Posted by karatelady (Member # 7854) on :
The Fibromyalgia and Fatigue Centers test for lyme using the Western Blot through Igenex labs.
They took 23 vials of blood my first visit as most with chronic lyme have messed up hormones along with active viruses.
I've seen people in my center (Atlanta) from as far away as the Caymen Islands so you may have to travel a bit.
I hope you can get help soon,
Sandy
Posted by Twinklette (Member # 10563) on :
Thanks Sandy! Actually the center in Boston is only about 45 minutes away...I can't thank you enough for posting that site.
Are the Igenex tests covered by insurance? Does the Center charge the appt fee of $360 even though I ony want to get the lyme tests done? Does my primary have to order or can I contact them directly? NO clue how to go about this.
Posted by karatelady (Member # 7854) on :
It really depends on the insurance company. I have Aetna and they wouldn't pay for the Igenex because "there is no lyme in Georiga."
So yours may be different.
The best thing to do would be to call the FFC in Boston and find out what their protocol is.
You will most likely have to pay up front and then file with your insurance company. Mine paid for most of the appointment but not all.
Yes, you'll have to do the visit - almost all of my blood work was paid for which is the expensive part.
Its worth it - what else are you going to do?
If you decide to go there, send me a pm and I'll go over the particulars with you.
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