[invisable]

Does anyone know if symptoms of Lyme Disease can be only abnormal nerve sensations? I have had many tests with no dx.

Would lyme normally have other symptoms than only abnormal nerve sensations?

Tx in advance.

[lilo55]

Lyme-- from the research I've seen-- can have many symptoms and be individual to each person.

As for me-- in addition to many other symptoms that made me suspect Lyme-- were: severe stiff neck and trapezius muscle, pin prick sensations everywhere, muscle twitches everywhere and as you mention: abnormal nerve sensations.

So far, my 2 Lyme blood tests have come back negative--- but negative tests don't always mean you don't have Lyme. Tests can be very unreliable.

I have three friends that tested negative many times before getting a positive.

I have been diagnosed with TOS...Fibro....and Tension Myositis. But I really believe it's all Lyme related though my blood tests (so far) can't prove it.

Best to see a very good Lyme literate doctor. And IMO you should have some other symptoms in addition to nerve pain. Can you think of anything else that's been going on? Fatigue? Sensitivity to sound? Brain fog?

If you check out all the Lyme sites-- especially those that suppport Chronic Lyme-- you will see a weath of info. on symptoms.

I've been on Doxycycline for a month-- many of my symptoms have resolved but I still have wierdo nerve tingling and pin prick sensations. I am low in Vit D....which could be part of the problem.

If this nerve stuff isn't Lyme, then I don't know what's wrong with me. Very scary and frustrating.

Please describe your 'abnormal nerve sensations'. I'm curious to see if they are similar to mine.

Best wishes!

[invisable]

Originally Posted by lilo55

Lyme-- from the research I've seen-- can have many symptoms and be individual to each person.

As for me-- in addition to many other symptoms that made me suspect Lyme-- were: severe stiff neck and trapezius muscle, pin prick sensations everywhere, muscle twitches everywhere and as you mention: abnormal nerve sensations.

So far, my 2 Lyme blood tests have come back negative--- but negative tests don't always mean you don't have Lyme. Tests can be very unreliable.

I have three friends that tested negative many times before getting a positive.

I have been diagnosed with TOS...Fibro....and Tension Myositis. But I really believe it's all Lyme related though my blood tests (so far) can't prove it.

Best to see a very good Lyme literate doctor. And IMO you should have some other symptoms in addition to nerve pain. Can you think of anything else that's been going on? Fatigue? Sensitivity to sound? Brain fog?

If you check out all the Lyme sites-- especially those that suppport Chronic Lyme-- you will see a weath of info. on symptoms.

I've been on Doxycycline for a month-- many of my symptoms have resolved but I still have wierdo nerve tingling and pin prick sensations. I am low in Vit D....which could be part of the problem.

If this nerve stuff isn't Lyme, then I don't know what's wrong with me. Very scary and frustrating.

Please describe your 'abnormal nerve sensations'. I'm curious to see if they are similar to mine.

Best wishes!

I have no brain fog, fatigue or any other symptoms to speak of.

My sensations are all over pin pricks, or bee stinging type feelings, every few seconds from head to toe (controlled somewhat right now with Gabapentin), feelings like water running down leg or a sparkler hitting leg. One time it felt like an electric current running through body. Electrical wormey feelings, buzzing, vibrating feels, not limited to limbs, could be anywhere on body.

How did you talk Dr. into Doxycycline with neg. tests?

I am having trouble find a Lyme Literate Dr. in my area......Buffalo, NY, I can find an infectious Disease Dr., but not sure if he will be my answer.

Yes, I am very scared, frustrated to say the least.

[lilo55]

Originally Posted by invisable

I have no brain fog, fatigue or any other symptoms to speak of.

My sensations are all over pin pricks, or bee stinging type feelings, every few seconds from head to toe (controlled somewhat right now with Gabapentin), feelings like water running down leg or a sparkler hitting leg. One time it felt like an electric current running through body. Electrical wormey feelings, buzzing, vibrating feels, not limited to limbs, could be anywhere on body.

How did you talk Dr. into Doxycycline with neg. tests?

I am having trouble find a Lyme Literate Dr. in my area......Buffalo, NY, I can find an infectious Disease Dr., but not sure if he will be my answer.

Yes, I am very scared, frustrated to say the least.

A good LLMD will treat on symptoms not on test results. I was put on Doxy before my blood results came back. I mentioned to my doctor that I had pulled ticks off body all summer but did not see the classic bullseye rash which only presents in about 60% (if I remember correctly) of people bitten by infected ticks anyway.

If you wait around for a positive test to come back, you could be waiting a long time and thus be wasting precious weeks or months in treating an active disease. It is often very difficult to diagnose Lyme only by blood tests in many cases. It is no secret that tests for Lyme can be very unreliable.

If you go to the LymeNet site you can request a list of LLMDs in your area.

Since you live in NY, you should get a pretty good list sent to you. But first read their rules on posting correctly.

Also, read through the info on Dr. Burrascano's 'Advanced Topics on Lyme Disease'. It's public knowledge on the internet so there should be no problem with me directing you to a search there. His name is freely mentioned on other Lyme boards.

I actually had to think back over the past year and did remember many symptoms I had--- that came and went. Lyme can do this btw, and make you think you don't have it because the symptom or symptoms have disapppeared or don't seem severe enough to pay attention to.

It is also well documented that Lyme is known as the great immitator and can present as many other diseases or syndromes.

Hope this helps!

[Lymeme]

Originally Posted by lilo55

A good LLMD will treat on symptoms not on test results. I was put on Doxy before my blood results came back. I mentioned to my doctor that I had pulled ticks off body all summer but did not see the classic bullseye rash which only presents in about 60% (if I remember correctly) of people bitten by infected ticks anyway.

If you wait around for a positive test to come back, you could be waiting a long time and thus be wasting precious weeks or months in treating an active disease. It is often very difficult to diagnose Lyme only by blood tests in many cases. It is no secret that tests for Lyme can be very unreliable.

If you go to the LymeNet site you can request a list of LLMDs in your area.

Since you live in NY, you should get a pretty good list sent to you. But first read their rules on posting correctly.

Also, read through the info on Dr. Burrascano's 'Advanced Topics on Lyme Disease'. It's public knowledge on the internet so there should be no problem with me directing you to a search there. His name is freely mentioned on other Lyme boards.

I actually had to think back over the past year and did remember many symptoms I had--- that came and went. Lyme can do this btw, and make you think you don't have it because the symptom or symptoms have disappeared or don't seem severe enough to pay attention to.

It is also well documented that Lyme is known as the great imitator and can present as many other diseases or syndromes.

Hope this helps!

lilo55 ...very good advice well done.

[LizaJane]

please check the peripheral neuropathy board if you haven't already. Read all the stickies. Make sure you've had your B12, thyroids, and everything else talked about there looked at.

There are a number of new yorkers there who have neurologists who have worked up their neuropathy symptoms, and who know good doctors.

[applewine]

Originally Posted by invisable

I have no brain fog, fatigue or any other symptoms to speak of.

My sensations are all over pin pricks, or bee stinging type feelings, every few seconds from head to toe (controlled somewhat right now with Gabapentin), feelings like water running down leg or a sparkler hitting leg. One time it felt like an electric current running through body. Electrical wormey feelings, buzzing, vibrating feels, not limited to limbs, could be anywhere on body.

How did you talk Dr. into Doxycycline with neg. tests?

I am having trouble find a Lyme Literate Dr. in my area......Buffalo, NY, I can find an infectious Disease Dr., but not sure if he will be my answer.

Yes, I am very scared, frustrated to say the least.

Invisable,

I share symptoms very closely with you. I have no brain fog at all and never have. I have the water running down leg sensation and in feet big time, just like you.

I also have had cycles where I'll get bee sting sensations and burning all over my body. These are not all the time but happen normally after an upper respiratory infection and last a month or two. I think they start out feeling like water drops all over and then turn into bee stings after a few days.

I also have chronic muscle pain / myofascial pain syndrome in neck, jaw, temples, back, hip.

I've had all this for about 10 years. And can't get effective treatment and diagnosis.

The health department doesn't care about tick borne disease infections. They need to prepare an antigen panel test for all tick borne infections ASAP. The technology exists, they just won't do it. Then prepare new medications if needed. Instead they pretend we don't even exist and doctor's do too.