Let me apologize in advance for the length of this post. I am looking for opinions based on the incredible amount of knowledge and experience on this board. Let me also say in advance that I am fully aware that opinions expressed are opinions only and will not be construed as medical advice. I have recently been down a path that is probably familiar or similar to many on this board but I am having trouble convincing myself that what I have is lyme as opposed to MS are ALS and I am hoping to get as many thoughts and opinions as possible. Let me mention that I can not absolutely remember a tick bite within the last few years but I do have a couple of situations that I can confirm. I know that I had at least a couple of ticks removed as a child after camping in the woods of Kentucky (30 years ago - Now 41 years old). I also know definitively that I have removed two ticks from my dog within the last three years (inside dog - this was weird). Lastly I vaguely remember a few years ago thinking that I must have had an allergic reaction to a bug bite due to a small rash that I found on my leg.
With that said I have listed below the chain of events since Jan. 2003 until now that brings me to this post. Again sorry for the length but hoping to gain insight. I may not be able to respond right away due to a business trip but I will reply as quickly as possible.
Thanks again
Lazarus
Jan 2003 - Oct 2004 Symptoms
Noticed a mild negative change in energy mid-year of 2003.
Nov. 2003 had a routine physical with a stress test showed a right artery block (couldn't have been more surprised) but quickly resolved when resting. Sent to Cardiologist for echocardiogram and nuclear test. Imaging came back completely normal but EKG still showed block.
Cardiologist said they were 85% sure it was something called diaphragmatic attenuation (sp). I insisted on a Heart cath to confirm and results- came back completely normal or in his words ``wide open''.
Also have had occasional heart palpitations for many years but increasingly in the last two years.
Chronic sinus issues for years - not debilitating just annoying.
Sporadic issues with inability to sleep about 10-12 times per year.
I often wake up with persistent itching neck ( pins and needles) especially after being in the sun all day.
Migrating muscle spasms occasionally eyelids , biceps
Sporadic twitching (fasciculation's) of calf muscles began, especially at night. 80% calves 5%eyes 5%mouth and 10% other parts of the body. This started in calves on and off for at least a year and a half. Neurologist was not concerned.
Constantly felt like I was fighting some type of infection. Somewhat energetic in the morning but I seemed to crash around 2 PM each day. Naps seemed to help
Jan. 2004 - Injured the nerve running to index finger on right hand (Pretty severe weakness) using a chipping hammer to renovate bathroom. Placed on steroids by Neurologists but discontinued steroids quickly (4 days) due to sudden onset of weird symptoms. This was all well before I new anything about Lyme. Weakness resolved after a couple of months.
Began to notice bouts of stiff neck. Cracking and creaking often with movement
Began to notice tingling on scalp especially around where sunglasses touched scalp
Started to notice mild arthritic pain in three of the fingers on right hand. Comes and goes.
.Aug. - Oct. 2004 continues problems with mild nausa , constipation, reflux and lack of energy. Visited gastro doc and had colonoscopy and endoscopy witch came back negative.
Most of these symptoms by themselves seemed fairly mild and tended to come and go.
I attributed most of them to getting older.
Dec 2004 - March 2005 - every thing changes with stress of mother passing away
Began noticing a substantial decrease in energy daily through Nov. 2004
Increase in irritability and feeling of stress. Originally went to Neurologist for mild random tingling or mild numbness in feet. Discussed twitching at that time. This started at least a year and a half ago. Performed - EMG Negative
Visited Primary care Dr. 3 times for fatigue and chronic sinus problem
Dec. 21 - Mother visits for Christmas and within one week she is in the hospital and diagnosed with lung cancer.
Dec 27th onset of a rash on front abdomen (non bullseye) - itchy crusted over healed with continued breakout on back. Coincided exactly with diagnosis of my mothers lung cancer (stress)
Pulling or small twitching in calves and other parts of the body increased significantly suddenly.
Days when legs feel like jello and hands tingle and feel a little uncoordinated.
Mother passed away Jan 4 from Lung cancer (1 week from diagnosis to passing - Amazing). Extreme onset of additional stress.
Burning under arms, elbows and legs during extreme stress. Also tingling and burning in hands during this stress.
Muscles became very sore and cramped easily. Hot baths are the only thing that seems to help this.
Lost 15 pounds during the stress after mother passing. This is when the symptoms were at their most extreme.
Extreme lack of sleep from Jan 6thth to Jan 24th
Severe anxiety (panic) and detachment from family
January 27 - Dry eyes and mucous membranes. Onset of tingling jaw and tightening around the mouth. Dry throat (red) and tongue at times feeling irritated but not sore. Maybe affecting speech.
Facial muscles twitching began. Not visible but I could definitely feel these.
Scalp tingling with face and neck feeling sensitive to heat and cold. Tongue began to tingle accompanied by a raw or burnt mouth feeling.
Visited another Neurologist for fear of ALS. He did not think I had anything but did another EMG to satisfy me. After test he still did not see anything that particularly concerned him. He prescribed an SSRI (?) for the anxiety and possible depression but I did not take these as I did not want to go down that road.
Pain in bottom of feet and palms of hands. (Feels like tendon and bone pressure pain.)
Friend from church mentioned possibility of Lyme . This friend has had it for a while and sent me to his doctor who also has Lyme. She sent blood work to IGeneX Lab and the results came back as follows:
Lyme IGG Western Blot - Positive
18 kDa +/-
22 kDa -
**23-25 kDa -
28 kDa -
30 kDa +/-
**31 kDa +/-
**34 kDa -
37 kDa -
**39 kDa +
**41 kDa ++
45 kDa +
58 kDa +
66 kDa +
73 kDa -
83 kDa -
**93 kDa ++
Lyme IGM Western Blot - Positive
18 kDa -
22 kDa -
**23-25 kDa -
28 kDa ++
30 kDa +/-
**31 kDa ++
**34 kDa +/-
37 kDa -
**39 kDa +/-
**41 kDa +
45 kDa +/-
58 kDa +/-
66 kDa +
73 kDa -
83 kDa -
**93 kDa -
Symptoms while on Abx
Anxiety and severity of most symptoms reduced after getting test results but before starting antibiotics.
Doc put me on 100mg TID until I could see a LLMD that she referred me to.
Leg muscle twitching was still significant at this time.
Significant increase in cranial/ facial twitching, tingling, and itching.
Tongue seems desensitized or even tingling at times accompanied by dry mouth
Sudden onset of new Sacrial pain (arthritic ache) migrating to lower back lasting two to three days then disappearing without return.
Leg strength tends to wax and wane with only minimal feelings of pins and needles.
Burning under arms and down arms continues but seems reduced.
Feels that I have the inability to sweat.
Finally, I saw the LLMD that I was referred to last week and he took me of the doxy that I had been on for six weeks and is starting me on IV rocephren with tindamax that I will start next week.
Immediately after coming of the doxy most symptoms came back strong - especially fatigue and muscle soreness. Can't decide if it was the doxy or stress from thought of going on IV antibiotics.
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