HI,I need help.

Hi,im from Orlando Fl
male
38 years

for the past 18 months I been going trough hell
i was doing pretty good ,eating healthy,exercising 4-5 days a week with cardio and weights
one day all the sudden i started vibrating,shaking and having burning sensation on my calves,forearms,back of head and neck and headaches daily,after a few weeks the tremors ease off but didnt stopped ,the started the twitching Non stop on calves,hands eyelids.
feeling tired all day,just want to sleep,feeling weak
and in 2 or 3 months everything got worst.
here are my symptoms they haven stop if anything they get worst some times
numbness and tingling in limbs.
Im loosing my body hair,specialy in my legs and some Head hair

Headaches
stiffness
twitching all over body,including neck at rest and with movement.
weakness entire body
cant concentrate ,keep forgetting simple stuff even wife name.
its been getting worst over time.
spasm
muscle pain,intermittent.
stiffness and pain on neck muscles ALWAYS ,pain when touched.
pain in joints,neck ,knees,hips ,ankles NO Swelling yet
blurry vision on left eye.
burning sensation on muscles
I get tired just holding a 2 liter pop jug for 30 secs,muscle start shaking and twitching
feeling depressed,confusion
some trouble swallowing
trouble breathing ,feeling like shortness of breath.
trouble sleeping ,since day 1
erectile dysfunction since day 1
drooping things with hands
some dificulty walking ,because legs feel heavy and sometimes i trip too much

Doctors i been trough
3 General practitioners...No Luck
4 Neurologist ,including 2 ALS specialist ,they say i dont have ALS buy found some neurophaty sings
done 3 EMGs,2 nerve conduction tests,
tons of blood work
1 doctor for Erectile Dis function ,cant remember name for that,sorry...prescribed Viagra
ED is mild ...I dont have (morning wood) found that i have low testosterone level,not taking meeds cause is border low.
1 endocrinologist ...didnt find anything
1 rheumatologist ...tons of blood work found elevated Rheumatoid factor and put me in rheumatoid arthritis pills,been on them for 6 months haven't feel any better.
negative ANA 3 times,
a few more MDs but i just dont like theyre actitudes.

remarks.
Im afraid of ALS cause i got all the symptoms, 3 neurologists have told me my EMG doesn't show signs of it.
my muscle reflex are slower,
i have Low testosterone levels,elevated rheumatoid factor

ALL of these started from the blue one day and haven't stopped.
there are more miscellaneous symptoms like feeling sick sometimes...etc

any help would be appreciated,comments ,questions or suggestions are welcome.

It could be RA.

Neurologists are like Infectious Disease doctors; they can never get to the root of things.

My mother had ALS, but I think it was distinctly ALS. The way ALS works is that you either: Have more and more trouble swallowing and speaking, until the weakness spreads throughout your body. My mother got to the point that she could no longer swallow or speak at all.

Or: You get progressive paralysis in your legs that moves to the rest of your body.

It gets distinctly worse over time.

If you're having trouble swallowing and speaking, it will get pretty rapidly worse, and then my guess is you would know it was ALS.

However, having said that, a lot of Lyme patients get mistakenly diagnosed with ALS.

My mother never had shortness of breath, and didn't have brain fog until the disease was in its advanced stages.

Margaret

Hi Jayden,

Sorry you are going through so much right now.  It certainly does sound like Lyme's disease and its co-infections but your mentioned symptoms can also come from fluoroquinolones (Levaquin, cipro, etc.) or benzodiazepines (Valium, Xanax, etc.).  If you have taken any of the mentioned meds I would suggest you research them.

Please make sure you go to an ILADS lyme doctor and not the IDSA ones.....big difference.  Just keep asking questions and someone will get back with you.

Most of us have seen numerous doctors with no luck or diagnosis unless one finds a savvy doc.

Patty

In a man your age low testosterone is a lyme symptom.

Hi Jayden sorry you are not feeling well. We have all been there. I would get to a good llmd asap and try antibiotics. I think it will improve your neuro symptoms right away. I had many of the symptoms you do and I started with doxy and then moved to ammox and omnicef and felt a lot better. It is a terrible disease and the effects are difficult to deal with. I am doing better 9 months into it but I relapse when I stop abx. It can take a long time to get better. You have found a great support forum.

Jayden Im just curious if you have spent a lot of time outdoors. Many of the people here are outdoor enthusiasts etc.

Have you ever been tested for Vitamin B12 deficiency?

See www.youtube.com/watch?v=QqjyAeOLyKM

Your symptoms may at least in part be due to Vitamin B12 deficiency...

I'm not saying Lyme isn't a possibility...indeed, Lyme increases a person's need for Vitamin B12.

Hi Jay, my symptoms were dizziness (severe), floaters, blurred vision, mental depression, cogntive impairment, memory loss, pain in neck and shoulder and arm, shooting pains in chest, felt like heart attack, numbness and tingling in left arm and hand down into fingers, STIFF NECK 24/7. Pain was pretty severe and would subside as soon as I took antibiotics. I started on doxy which helped immediately. Could not handle it at high doses. Moved to ammox. Highly recommend cephalosporins (3rd generation). You will improve with treatment so dont delay. Took about 6 months of treatment before I was functioning pretty well.

Post Edited (BarnGurl) : 4/17/2014 3:57:57 PM (GMT-6)

HI Jayden,

Please shoot me an email (click on my name), or activate your email in your profile. At the top of the page you will see a tab 'My Profile' and you can add in an email and make it visible. I have a few names but no personal recommendations.

Unfortunately, many LLMDs are under constant scrutiny and medical board 'watchlist' so we do not post there names publicly on the forum.

~beth

I had anemia and I recently started Geritol tonic for iron supplement. Also has other b vitamins. I did notice an increase in energy etc. I am not elderly but I remember my Dad used chemo etc. in recovering from blood cancer. It seemed to help him a lot so I decided to give it a try and it worked.