No proper diagnosis yet.

[EcoScooter]

First it was mild CMT Charcot-Marie-Tooth.
Then is was spastic paraplegia.
Now, I'm told NO on CMT or any muscular dystrophy.
NOW, I have burning sensation (deep in the bicep muscles) or sometimes feels like sunburn. It occurs now daily & very often from stress, folding laundry, reaching out for things. I have lots of weakness in right leg. Sometimes twitching  in muscles, thighs, or even forearm. I get numbness all the time in my feet as well as pain if I kneel. When sitting I get like a pinched nerve feeling in the right buttcheek. I can't stand very long at all when barefoot. I get FATIGUED very very quickly these days. A simple VERY SLOW stroll around Sam's Club and I was sweating bullets when we reached the car. I was walking that day. Usually I'm on a mobility scooter for distance.
A friend sent me to this link which describes me quite closely:

Patients with chronic Lyme disease most commonly have fatigue, joint and muscle pain, sleep disorders and cognitive problems, also known as 'brain fog'. In addition, infection with Borrelia often results in a low grade encephalopathy (infection of the brain) that can cause depression, bipolar disorder, panic attacks, numbness, tingling, burning, weakness, or twitching. It can also be associated with neurological disorders such as multiple sclerosis, dementia, such as Alzheimer's disease, and amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease). The infection often results in hormonal deficiencies, abnormal activation of coagulation and immune dysfunction, which can contribute to the cause of the symptoms.
I'm so confused & getting more & more depressed as pain increases. I use Gabapentin but doesn't always work!

[heather7628]

You did not Patsy.  It is turning cold here and just really tired and hurting.  Really tired of doctors not listening to me.  I do not know if it is lyme or thyroid or even cancer.   At this point I am starting to think maybe I really am crazy.  This cold weather does not help wish I could afford to move to South Florida.  Hope all is well with everyone today and please keep me in your prayers.  As I will too.

[patsy10]

You did not come off as hateful at all.  I just wanted you to know that lyme is present is Georgia despite the doctors telling you it isn't.  I was told it was not present in Ohio either.  I hope my post did not sound negative.  It was not meant that way.

[EcoScooter]

This is the first site that I've found such interest so quickly! THANKS TO EACH that are contributing to my Post !! I'm signed up on several Support Sites & this one is the best so far. I live in Hawaii & Lyme is totally new to me, until I researched it a bit. I've never been bitten by a tick to my knowledge. The only rash I've had in the past would be prickly heat and Chicken Pox. I'm not a dog lover but family & friends have them. I'll pet on one the head once in a while. I've been near Bed Bugs when I worked Hotel Security. They look just like ticks and suck human blood. They are real...not a myth!! I've been all over Southeast Asia in the Navy. As a kid we played in the woods. The opportunities to be around a tick are endless. The Lyme Disease doesn't explain the numbness I get in my feet and fingers.  
Patients with chronic Lyme disease most commonly have fatigue, joint and muscle pain, sleep disorders and cognitive problems, also known as 'brain fog'. My short term memory is terrible. Is that Brain Fog? Who knows.
Infection with Borrelia often results in a low grade encephalopathy (infection of the brain) that can cause depression, bipolar disorder, panic attacks, numbness, tingling, burning, weakness, or twitching. It can also be associated with neurological disorders such as multiple sclerosis etc etc. I've had chronic depression for years. I have numbness, tingling, burning in biceps, weakness & twitching once in a while.
I JUST WANT ANSWERS !! To many ailments have too many overlapping symptoms! I guess I'll go ahead with Muscle Biopsy and see what road that sends me down.

[JackieCalifornia]

Re Lyme in Hawaii:  I've not researched it, but here's a thought:

I've been reading lately that there is some reasonably possibility that Lyme can be transmitted by mosquitoes (bite a Lymie ==> get Lyme bugs ==> bite a healthy person ==> give him/her Lyme).

Soooo, if a person with Lyme (knowing or unknowing) goes to Hawaii, gets bitten by a mosquito, and that mosquito bites someone else .... well, I don't need to connect the dots.

I don't know why it wouldn't be possible.  Bugs hitchhike all sorts of unexpected places and ways.Think about malaria, for example.

[wonko]

Don't worry, we all understand your frustration.  Heck, I live in an endemic area--rates in my county QUADRUPLED btw '06-'07, yet all of my doctors denied that I could have Lyme and refused to give me a W. blot.   If I faced such ignorance here where it is a big recognized problem, I can't imagine what it's like where you are.  

I don't know about the incidence of Lyme in HI, does anyone else?

[heather7628]

Sorry if I came off hateful.  I went to 3 dr.'s this past summer because of another tick bite did not have a rash this time but lymph nodes swelled up in neck and had a sore on the back of my head for 3 months.  The dr.'s kept saying lyme is not in georgia my reaction was probably caused by the tick saliva.  still does not explain all of my other symptoms that I have had for 15 years.  Would just like to know what is wrong with me Lyme or not jsut an answer.  i am sorry again Patsy if I came off hateful.  


Heather

[gorbybelle]

hi, just wondering if you have ever had a 'tick-bite'?  or maybe a 'bullseye' or other unidentified rash?

Many lyme folks never see a tick or rash - but I was just curious.

gorbs

[patsy10]

There is lyme in Georgia.  When I wrote that I wasn't sure of the incidence I was referring to the original poster who is from Hawaii according to the profile.

[heather7628]

I am so tired of Lyme disease being put only in certain geographical areas.  I have all the symptoms of chronic lyme disease.  Even had the d----- rash when I was 17 years old.  But noone would test me or even consider lyme when they could not find anything else wrong with me.  Now I am in my 30's with chronic problems still they can find nothing wrong with me.  I have been diagnosed with raynauds sydrome and low vitamin d. my favorite diagnosis was STRESS.  I am stressed because they will not find out what is wrong with me.  The reason Lyme disease is not in Georgia or the other states they say it is not in is because dr's do not test for it.  No test no positive results to be reported to the CDC.  Lyme disease is in all geographical areas.  

[EcoScooter]

Your comments are much appreciated !!!

[patsy10]

I have or have had most of the symptoms you describe.  I am better with treatment.  I am not sure what the incidence of Lyme in your state is.   Have you traveled to Lyme-endemic areas of the US?  Have you been tested?

[wonko]

The symptoms you describe and how reaching/walking makes things worse sounds very familiar to me and how I felt pre-treatment.  I remember how holding a small cup of coffee would make my whole hand tingly/burn like crazy, and would spread up my arm.  I'm normally a rather robust person, but I could hardly carry anything in my arms or walk far without becoming overwhelmed with symptoms.  I often felt like I had fresh sunburn on my forearms and legs.  The list goes on.  I agree with your friend that Lyme sounds possible.

As you probably know, there are other conditions with overlapping symptoms.  Have you been through a standard barrage of tests to rule out other conditions?  Lyme testing is not so reliable, though many doctors dispute that remark.  You may want to seek a Lyme literate doctor, or "LLMD."  (This is a patient term for doctors who will diagnose/treat difficult Lyme cases, it's not a formal distinction.)  There is an organization called "ILADS" (International Lyme And Associated Diseases Society) and their site has a lot of info for both patients and doctors.  My LLMD is an ILADS member, which gives me extra confidence in his abilities to treat.