Please read & help me if you can - frightening, worsening symptoms after 1 yr treatment

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Dillon's Mom
New Member


Date Joined Jan 2017
Total Posts : 9
   Posted 3/8/2018 8:56 PM (GMT -6)   
Friends, I posted about a month ago, but things have gotten worse very fast, and I’m in crisis last 6 weeks. I’m just paralyzed with fear and can’t think rationally. Please help me if you can. (History: Lyme positive LabCorp Jan ’17, likely infected year prior, heavy neuro involvement, LLMD has had me on 1 year abx, all symptoms resolved by Oct ’17).

What started out 6 weeks ago as internal twitching, trembling and loss of skills/coordination of my left hand has changed /expanded over the past few weeks: 1) Expanded from left hand up arm to left wrist, forearm and upper arm and even left shoulder now, which now feel fatigued and burn with fatigue 24/7. Not weak per se, as I seem to have the same strength, but they tire so easily and burn from fatigue. It happens noticeably when I'm typing and driving - can really feel the fatigue. Even in the morning before I get out of bed and obviously haven’t used the muscles. 2) worsening uncoordination of my left hand - mostly pinky, ring and thumb - makes typing and turning pages difficult. Typing in particular is getting harder. 3) Just started random TWITCHING in other body parts, especially when resting - never had this before. Hideous. Just started several days ago after a month of the Left hand/arm symptoms 4) Upper calves behind knees feel really weird last 2-3 days – heavy and alive from within. Can feel the pulse in them constantly.

NONE of these were original lyme symptoms of mine. (My initial Lyme symptoms were severe brain fog, head pain and pressure, stiff neck, joint/muscle pain, tremors, tingling/numbness, chest pain, etc., although my left hand/arm was always worse from the lyme get-go). All are new beginning 6 weeks ago, and only after a complete year on antibiotics and treatment with total resolution of all original symptoms. Did have recurring 2-weeks of chest pain just days before all this started, like I had at lyme onset.

Deathly afraid of these new and increasing symptoms with regard to ALS, MS, etc. Fear has stolen my life, can’t function or work. 24/7 panic, adrenaline like I jumped in front of a car all the time. My family is trying to help but this crisis is bad. I was a fine, happy 55-year old 6 weeks ago.

LLMD started me on Bart treatment 10 days ago. Said it could be co-infection rearing now that the lyme was suppressed.

Here’s the thing…Lyme and Co has hundreds and hundreds of symptoms. Why don’t I have any symptoms that don’t match ALS or MS? Not even one. If it’s Bart, or another coinfection, or a return of lyme, wouldn’t I have other symptoms? Am I so paralyzed with fear I’m overlooking other symptoms? Is anxiety itself a symptom?

What are your thoughts friends? Know of other similar lyme experiences with fast progressive one-sided weakness/uncoordination, combined with weird twitching, AFTER a year on treatment? I’ve looked at so many threads from people who presented initially with these and other symptoms, just not anything with new onset later and so specific/limited in scope. What if this is something other than lyme. The anxiety/panic is crushing and killing me, almost literally. It's just gotta be lyme & co, right? I'm so scared.

Please help if you can. Please, please let this just be new co-infection or undertreated lyme. Hoping someone out there can help me understand what is happening to me. I'm so desperate, and I’d be so grateful for any reassurance. Sorry for the rambling, long nature of the post

BabsBunny
Veteran Member


Date Joined Mar 2017
Total Posts : 565
   Posted 3/8/2018 9:11 PM (GMT -6)   
Anxiety is a HUGE symptom of Bart and Babs.

I'm almost 2 years into it and new symptoms are popping up - nerve burning and itching and neuropathy and headaches and all kinds of stuff I never had before. And the anxiety and depression are the worst I've had in 2 years.

You will not have ALL the possible symptoms of Lyme or co-infections at once. That's part of the roller coaster and frustration - you think you beat something because something improved, only to have this whole new set of symptoms appear.

If you are seeing an LLMD, I would rest assured they are seeing very typical Lyme/Bart symptoms in you. I think they all say "well you can go to a neurologist/cardiologist/internist/etc if you really want" but its usually a waste of money. If they haven't seen it all before, they'd get you tested for something else.
Lyme, Babesia, Bartonella. Symptoms began 5/2016, didn't start treatment until 9/2016. Slow but steady recovery.

*twitch twitch*

Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 386
   Posted 3/8/2018 10:00 PM (GMT -6)   
I think about a month after I thought my Lyme was gone the first time I noticed my last two fingers on my left hand were numb. At the time, I attributed it to leaning on my elbow too much, but now I'm not sure.
I've also had very bad muscle weakness in my right arm, weak muscles in general, and my arms get tired when I drive. If I do something like trim a bush with a hedge trimmer my arms will get really weak and start to tremble. I also have a very strange feeling in the back of my knees a lot of the time.

I think muscle twitching with lyme is very common, and since it is in the same arm that was worse it is probably the lyme and/or bartonella acting up again. It's really annoying how lyme seems to come back sometimes just when you think it's gone.

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4917
   Posted 3/9/2018 3:05 AM (GMT -6)   
bart got my nerves like that but holy basil and little zanax helped ...then lot of bart treatment and magnesium and royal jelly ...rocephin helped ...als and ms are just name when they dont know its lyme bart ...i am still seeing ketes in my blood under the microscope after 2 yrs treatment ...at 85% with many modalities

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2305
   Posted 3/9/2018 6:00 AM (GMT -6)   
Hi Im sorry that you are having all these new and troublesome symptoms but try to hang in there with treatment and detoxing.

I have had those symptoms and still have some twitching and pulsing after treating for a year and a half.

The extreme fear symptom did go away after about 4 months of treatment,thankfully.

I understand that is scary and frustrating with these infections because we wonder can it be another illness.

Before when all the symptoms went away after a year did you continue treatment for a few months past that?

They say to keep treating past remission for a few months.

Your llmd it correct also that other infections like Bart can show up after knocking back another infection.


Well take care and I wish you the best of healing and soon, Jo

MooseSafari
Regular Member


Date Joined Jan 2018
Total Posts : 78
   Posted 3/9/2018 6:59 AM (GMT -6)   
Hi, your situation really brings up a lot of sympathy and well-wishing inside. Hope you can find an relieving answer very soon from here. Maybe can you recall if you did anything extraordinary with the arm or body using any limb in a static way for too long can of course give this trouble too, then worry can make the body more stiff and increase the condition.
I remember many years ago, 20 or so, long before I had any tick-difficulties I got some sort of half-paralyzis in my arm, couldnt eaven use it for tooth-brushing. The reason was due to too much static use, and with self-massage and other treatment it went away in a couple of months or so...

Hope the knowledge of having a lot of sympathic people in here can relieve some of your fear and encourage you to investigate and scrutinize your condition eaven further with a balanced mind...

Wish I could help more, be well soon....

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2047
   Posted 3/9/2018 10:12 AM (GMT -6)   
I didn't read all the responses here but wanted to chime in and give you some reassurance. When I started reading your new symptoms, I suspected bart and then saw your doctor did too. I 'd trust the doctor if I were you. Sounds like he's on the right path.

Don't be afraid of new symptoms. Write down what they are, when they started, and what treatment you are doing and the dates treatments start or change. That way you'll have a record. As you treat Lyme and coinfections, you will experience MANY new symptoms. Don't let that freak you out.

As others said anxiety itself is a major symptom, especially of the coinfections. I don't think you have any reason to fear any other diseases. Lyme and coinfections cause all the symptoms you mentioned. Try to put your mind at ease and focus on treating and detoxing and come here for questions, troubleshooting, and moral support. Hope you have a better day today.
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