I have a lot of Nuro issues, tremor both arms, stiffness left side, weakness, coordnation bad, stiff neck, cramping of the foot?
My LLMD said he never had a patient like me.
Posted by seekhelp (Member # 15067) on :
Nothing you wrote sounds that unusual to me honestly. Tons post here with your issues. Posted by Lymeorsomething (Member # 16359) on :
I agree. It doesn't sound too atypical. Just keep plugging away with treatment. Posted by Elaine G (Member # 20735) on :
I used to be like that. It gets better with good treatment.
Posted by saved10 (Member # 18413) on :
Elaine,
What was your treatment ans how long did it take for you to get better?
i have been in treatment for almost 2 years
Posted by Elaine G (Member # 20735) on :
Saved, I was sick for 12 years before being properly dignosed in June 2008. I have Lyme, Babesia and Bartonella.
I started with low doses and worked up to heavy doses. All oral. Never been on IV's. I started feeling better in 8 months.
I'm still making great progress. I attribute that to a great doctor and me doing what he says.
If you are not better in 2 years of treatment, you may have something else going on, like heavy metals or mold. That's only a guess, of course.
I remember my balance was so bad that I had to hold onto everything when I walked. I didn't drive for awhile. I still get the occassional foot cramp but notice only colder weather does that to me. No more tremors. I never had a stiff neck.
Posted by Lymeorsomething (Member # 16359) on :
I don't know what the doctor situation is in your area but you may want to consider trying another LLMD. Your LLMD may be good but sometimes a change offers a fresh perspective, especially if you've been on a plateau for a while.
Good luck.
Posted by dsiebenh (Member # 5353) on :
I'm with you. I don't get out much, and hold onto the walls when walking thru my house. Was up for 4 hours last night with painful back spasms. We shall see...
Posted by saved10 (Member # 18413) on :
dsiebenh,
Hope you get some rest. I'm so stiff on my left side its difficult to move when in bed.
Posted by nursejed1 (Member # 25155) on :
I have all over internal body tremors,stiff neck,headaches,tingling of hands arthritic pain in all my joints, vertigo,pain everywhere,fatique.I have sensitivity to touch,sound and light.I was treated in the 90's and did not stick with it now I have severe damage. I'm going back to long term treatment with antibiotics until and believe that sticking with it is the key from all the other testimonies. Sometimes I think I'm dying so yes some of us feel that bad.You are not alone. God bless you and hang in there. The film under our skin gave me hope.
Posted by saved10 (Member # 18413) on :
Nursejed1,
Thank you for your response. I hope we all get well soon
Posted by Remember to Smile (Member # 25481) on :
Dear saved10, nursejed1, and dsiebenh,
Remain hopeful. This winter of horrid symptoms will fade away. I agree with the other posters, your symptoms are common with CLD, aka neuroborreliosis, and you can get completely well.
I think coordination problems and the need to reach out for walls & furniture (while accidentally slamming a sore shoulder into a door jam) are symptoms of babesiosis.
I have Babesia, Bartonella, and several strains of Borrelia. Been infected more than 40 yrs and contracted Lyme Bb at least 5 times.
This time last year, my cognitive skills were slipping away while fibromyalgia pain increased and flared.
THANK GOD I was led to the ILADS website, then here!
I sought out the best LLMD I could possibly manage. Became early-onset Alzheimers with lots of autistic behaviors, rocking and hitting my forehead when I couldn't speak. Reading ability fell below Grade 2. I had multiple focal seizures and stopped driving for 6 wks.
I earned a varsity letter in track, yet had to slowly crawl up my stairs on all fours. I'd get winded just walking to the mailbox.
Two long-time friends who came to lend a hand (after desperate calls from me) each blurted, "Are you dying?" when they saw me. I replied, "Trying not to be!"
Writing all that empowers me, because it's in the past, and I'm never going back. My LLMD is excellent, and in treating Babesia first along with Lyme Bb, I've improved ALOT. I'm still less than 50% most days, but all over town, people tell me how good I look now. I'm glad I can walk and drive again!
November was my best month (stronger, healthier) in about 3 yrs. That was just 4 mons into treatment. Tougher scene now, because we switched meds and the Lyme roller coaster continues... It's not a straight shot for anyone with neuroborreliosis.
I share all this to let you know we can overcome CLD with proper care.
It doesn't matter if anyone else is as bad off as you; we want each and every person to live their best life, without pain & hardship from untreated chronic infections.
LymeToo is wise to mention the need to evaluate your tx and current LLMD. All are not equally skilled at getting patients into long-term remission.
Another thing that struck me yesterday is it must be a full moon because many posters seemed pretty stressed out. Looked it up this a.m. and found today is the full moon!
Since we're 70% water and teaming with pathogens, it's not surprising full moons have an impact...
Chin up! How else are you gonna see the stars? Smile
Posted by IckyTicky (Member # 21466) on :
Sounds pretty typical of Lyme and co to me! I had all of that. Some symptoms I still have after 3 years of treatment but some have gone away.
Stiff neck and neck pain, muscle cramps, very hyper reflexes, involuntary limb movement, all over muscle twitches, joint pain, jaw pain, spine pain, balance issues, vertigo, tingling in extremities, neuropathy, sensitivity to sound and touch, my hearing "blinks" off and on in the mornings, nystagmus, clonus, myoclonus, tremor, ataxia, severe fight or flight response/jump out of my skin at every noise, heart rhythm issues, low body temp, headaches, brain fog...etc etc etc!
Some of these symptoms have gone away, some go away and come back, some are still here. But I've gotten a LOT better than where I was three years ago when I first got dx. I've had LD for at least 21 years undiagnosed.
If your LLMD thinks your symptoms are odd... well, thats odd to ME.
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