Can Lyme take a Relapsing-Progressive form? Positive 41 IGG, 8 Years of undiagnosed symptoms....

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amplifyd1
New Member


Date Joined Mar 2018
Total Posts : 1
   Posted 3/14/2018 7:57 PM (GMT -6)   
I have been searching for answers since 2010 for my ailments and so far not much has come of it. I have recently realized that I could be suffering from Lyme disease, something that I(or doctors) haven't given much thought to. I have been worked up pretty good with different labs over the last 8 years, countless blood tests, 5 MRIs and many different doctors. The curious part of my condition is the way it presents, I have read through this forum and many others and have not seen something exactly like it.

My question to everyone on this forum is can lyme present itself in a progressive-relapsing pattern? My initial symptoms in 2010 were changes in vision(which I can now describe as visual snow), headache, fatigue, and slight tingling that moved around the body(mostly hands/feet at the beginning). I have had episodes where these symptoms increase and then either disappear entirely, or slowly tapper off but never return to the previous level of symptoms. In between these "flares" symptoms may change gradually or come and go slowly over time.

I will post a rough summary of symptoms and timeline below:


Since 11/2017
-Initial tingling in thumbs, more prominent in right side, progressed to include index fingers,
itching/burning intermittently. Stiffness in both hands in area where thumb meets hand and wrist. -------
-Tingling on outside of arms/triceps area, almost an achy feeling
-Fatigue, general malaise
-Buzzing in bottom of feet intermittently
-Cognitive problems, difficulty thinking/memory/awareness of surroundings, mood swings, severe
anxiety/mental breakdowns
-Tight achy thighs, sometimes lower legs, no loss of strength, muscle twitching in thighs(mostly in left
thigh). Tightness has sometimes spread to back muscles. Feet feel heavy.
-Cold hands and feet, changes in color of hands, red/white blotchy when normal, red when warm and pale
when cold. Hands turn dark purple when getting out of shower and veins become very visible. There has
been vein visibility in hands at all temperatures.
-Flushing of face, whole face is redder, butterfly-like rash across the bridge of nose and cheeks.
-Balance issues, no falling over but feel need to pay closer attention to walking/moving
-General muscle twitching, mostly in extremities(legs, arms , face)
-Left side of face/arm/leg tingle since 1/17, no loss of coordination or strength
-Feeling of entire body being hotter or colder than normal(actual body temp normal)
-Occasional Tremors when arms put in certain positions, sometimes feel like whole body is vibrating from
the inside
-Joint popping throughout entire body, started in hands with the tingling has spread to moist joints. ---
-Cracking in neck and fingers are most prominent. All joints(knees, ankles, back, hips, shoulders, toes) are
affected.
-Heart Races randomly, no exertion need to cause increase in pulse, a few episodes of heart palpitations.
Symptoms have not regressed

Previous Episode of Neuro Symptoms Sept 2014

-Initial Tingling Started in left pinky & half of ring finger, developed in right side. Left shoulder muscle had
consistent spasms/twitching.
-Fatigue, General Malaise
-Feeling like hands shaking from inside, tingling in biceps
-Buzzing in feet
-Balance felt off
-Tight achy legs
-Cognitive issues, difficulty concentrating , felt like in a fog, feeling of being lost or losing sense of
direction.
-Most symptoms slowly dissipated after about 6-8 weeks while the decreased cognitive function remained
for some time longer, fluctuating in intensity.

Episode from Sept 2011
-Buzzing in parts of body (hands/feet)
-Slight muscle stiffness in legs when exercising
-Harder to concentrate/critically think
-Slight balance issues, vertigo
-Feeling of tremors/body shaking
-Symptoms slowly improved over the course of months, baseline of symptoms never regressed to previous
level prior to this incident.


Initial Episode 2010
- Indescribable vision issues was the first thing I noticed, never has disappeared. Progressively has gotten
marginally worse, best way to describe vision is watching a tv with a fuzzy connection.
-Headaches, dizziness, lightheadedness, fatigue. Headaches eventually disappeared
-Cold hand and feet
-Weight loss of about 30 pounds(gained weight back over course of a year)
Symptoms subsided in severity over course of 6 months, vision never improved.

I am a 28 year old male, no family history of disease/cancer. I did find a tick on my head sometime before this (6 months-2 years?) but it was not attached at the time. I couldn't tell you the time frame of this event as it seemed like a non-event at the time. I recently tested positive on the WB for IGG Band 41 but everything else was negative. I saw an LLMD last week and I will have a follow up next week, he took a bunch of blood and I did the DNA Connexions PCR, hopefully will have those results next week.

I never post anything, anywhere so I apologize for the long post but I am not sure where else to turn. If anyone has had a similar experience or has any idea of another condition this could be, please put in your 2 cents.

Thanks.

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 3/14/2018 10:44 PM (GMT -6)   
Hello and welcome to the forum! You'll get a lot of good feedback here. I never used to post anything anywhere either but this site has been so helpful! I just wanted to share with you that a lot of my symptoms started out similar to yours, vision changes accompanied them, blurry especially in the right eye but also just a strange feeling. If you've had ticks on you then there's a good change you could have been bitten and never knew it, since supposedly it's the incredible small ticks that are the ones carrying disease, someone correct me if I'm wrong! Anyway, you'll get some other good input from some of the others! But I just wanted to say I know what your going through! Hang in there!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32695
   Posted 3/15/2018 1:09 AM (GMT -6)   
Hi ampilfyd1 - welcome!


Symptoms can come and go at varying intensities with this disease.

You've certainly got a lot of symptoms that point to a lyme infection.
It's good that you already have a LLMD...keep us posted.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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