Hi all I am new here. And looking for advice and answers

General
1

Hello everyone :

I am on a quest to try ad find out whats wrong with me , so please forgive me in advance for asking lots of questions ..LOL

I will just start at the beginning , 3 years ago I had an MV accident , ( thank you drunk driver ) , since then I have had a TON of weird and intermittent symptoms . First off I am left with Ataxia from this , but after many MRIs EKGs, EMGs, NCTs, Xrays , CDC blood tests , no doctor can find a cause for all this . Oh and surgery also , cervical disc replacements .

I have had 2 Elisa Lyme tests a year apart , both showing 3 of 5 and 4 of 5 bands positive , it took me days of hounding at that lab to get someone to look up my results , HOWEVER 3 consecutive doctors have all said this test means I am NEGATIVE. And to move on from looking at lyme as a cause for my symptoms .

I just saw another Clinical PT specialist last week and her answer was that I have advanced lyme , based on an exam and my medical records .

I am just going to list some of my symptoms and let those of you that are going thru this chime in if you like if any of this sounds familiar. Also all but a few of these symptoms come and go , its like the symptom de jour menu ....Thanks n advance for any help you can provide .

Spacitity in legs , left side is worse,

Spacitity in arms left is worst

Ataxia of legs and feet

Unbalanced dizzy feeling leading to many falls

Ringing in ears

Blurry vision

severe lower back pain

cold sweats

excessive shivering when cold

sweaty palms and feet

bladder and bowel issues , urgency , incontinence

brain fog

every joint hurts at different times

swolen feet and ankles

toes turn black

small muscle twitches

slurred speech , low voice , clogged sinuses, choking

face and lips are numb , face and eyes swell up

pins and needles everywhere at different times

phantom pains , shooting and stabbing ( severe )

intestinal track issues like gerd , and this super loud popping and gurgling noise from there .

Jumpy and on edge for no reason .

There are MANY more weird symptoms that come and go , for weeks one symptom like coughing will be prominent and then ust clear up and another will take over like bladder issues .

Does any of this sound at all remotely familiar or am I like the docs all say chasing windmills .

2

You did indeed have a negative test for lyme twice. You might want to ask for a western blot just to put your mind at ease. If your clinical PT is willing to make adiagnoses based on your symptoms and lab tests RUN. She not only isn't qualified to make a diagnoses especially with the information she has, she sounds like a wash as a PT.... You have got to be in horrible pain daily. I am not telling you not to pursue the

Lyme angle. I would do two other things. That accident certainly set off a chain of events tha have got

to related unless of course you came in contact with a tick right after the accident. Thats too much coincidence to me.

I'd get a good workup with a good rheumatologist. Eliminate inflamation and auto immune. Even if its Lyme, its likle autoimmune by now anyway. The second thing I would do is get into pain management. You are suffering a lot of nerve pain. You deserve to get that under control. Whatever shakes down, you need that done anyway./p>

3

thank you fr the reply tj

My doctors are tired of me asking about Lyme also , I have requested a western blot but its not happening ., like you said the generic test showed negative twice thats it .....

Yes the accident cased damage , but every one of them also thinks I have an infection of some sort , what ever it is it was triggered then , I do live in rural northern wooded Connecticut on 900+ acres of woods and corn fields . The deer literally come up to the windows sometimes . So thats why lyme keeps coming up . The surgeon who operated on me thought I may have had it at the time of the operation and it got into my spine . But that was just a guess as he has no way to test for it .

I was anemic for a year half after the surgery ,and my Vit D and B-12 were low also . But not enough to cause all ths ,

I have been worked up for MS , Parkinsons, ALS, MG, and a bunch more and all negative , Spine MRI , ( except damage ) EMG , NCT, Brain MRI all clean .

As for the PT , I respect her opinion it is based on past experience , but is just that an opinion , and thats all i take it as .

Perhaps you are right and its time to give up the lyme ghost and move on , thank you for your help .

4

There are 100 forms of reactive arthritis that are brought on by infection or trauma. Koebner Phenomena is an explanation for some of them. A stop with a rheumatolgist would be next on my list. She can likley get some closure on the Lyme issue.

5

Hello Searcher,

One of the ways that I was diagnosed with Lyme’s disease was through my retinal specialist. I noticed you said you had blurred vision. Is that in one eye or both? My retinal specialist stated that losing vision in one eye can only be a handful of diseases. Limes disease is one of those. It was one of the clues that prompted my doctors to test me for limes disease.

Also, I had a spinal tap. A MRI showed encephalitis and my initial limes test came back positive, so my doctor ordered the spinal tap. At that time I was told by my infectious disease specialist that I had a high level of limes disease in my spinal fluid. I also had meningitis and was told that the limes disease had penetrated my blood brain barrier. Encephalitis and meningitis are common when you’re limes disease is in your spinal cord and has penetrated the blood brain barrier her. Did any of your MRIs show brain swelling? I also have spots on my brain. My neurologists do not know what they are. I have regular MRIs to see if they are changing or growing.

I am sharing this with you in hopes that maybe some of the things that I have went through will help you in figuring out whether your condition stems from limes disease.

Good luck and keep searching.
Michelle

6

I agree with tj. There are a lot of autoimmune that don’t show up in labs, or even on xray (until they progress anyway). At the very least, you can get your pain under better control. Trust me, the world looks better when you don’t hurt, and it’s easier to get a handle on your health and life. Life can be better than this.

Just because they can’t figure out what’s going on, doesn’t necessarily mean it’s Lyme. There are a plethora of conditions that cause similar symptoms, and sometimes it helps to start with a clean slate. Present to a new doc, and state your symptoms and the effect they have in your life. Let the do their assessment, and don’t allow yourself to steer it in any way, then see what happens.

I hope the best for you and that you are able to get some good answers that lead to a course of treatment that helps.

7

Yes I agree , i am trying my best not to steer it in any direction , I just keep getting the word Lyme thrown at me . I just want to know for sure if it aint then thats one more thing I dont have to wonder about .

That being said I forgot to mention one of my weird symptoms , I get the sensation of pin pricks all over , mostly back and chest arms and face ,and top of my head , its like being stung by a thousand bees or falling into a pricker bush . I almost feels like an EMG . It comes on when I cough heavy or am exerting physical strain like lifting something heavy , and lasts about 20 seconds .