Open main menu ☰
HealingWell
Search Close Search
Health Conditions
Allergies Alzheimer's Disease Anxiety & Panic Disorders Arthritis Breast Cancer Chronic Illness Crohn's Disease Depression Diabetes
Fibromyalgia GERD & Acid Reflux Irritable Bowel Syndrome Lupus Lyme Disease Migraine Headache Multiple Sclerosis Prostate Cancer Ulcerative Colitis

View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders Bipolar Disorder Breast Cancer Chronic Pain Crohn's Disease Depression Diabetes Fibromyalgia GERD & Acid Reflux
Hepatitis Irritable Bowel Syndrome Lupus Lyme Disease Multiple Sclerosis Ostomies Prostate Cancer Rheumatoid Arthritis Ulcerative Colitis

View Forums A to Z »
Log In
Join Us
Close main menu ×
  • Home
  • Health Conditions
    • All Conditions
    • Allergies
    • Alzheimer's Disease
    • Anxiety & Panic Disorders
    • Arthritis
    • Breast Cancer
    • Chronic Illness
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Migraine Headache
    • Multiple Sclerosis
    • Prostate Cancer
    • Ulcerative Colitis
  • Support Forums
    • All Forums
    • Anxiety & Panic Disorders
    • Bipolar Disorder
    • Breast Cancer
    • Chronic Pain
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Hepatitis
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Multiple Sclerosis
    • Ostomies
    • Prostate Cancer
    • Rheumatoid Arthritis
    • Ulcerative Colitis
  • Log In
  • Join Us
Join Us
☰
Forum Home| Forum Rules| Moderators| Active Topics| Help| Log In

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

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
profile picture
Dillon's Mom
New Member
Joined : Jan 2017
Posts : 12
Posted 3/8/2018 7:56 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
profile picture
BabsBunny
Veteran Member
Joined : Mar 2017
Posts : 669
Posted 3/8/2018 8:11 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.
profile picture
Notime4lyme
Veteran Member
Joined : Dec 2017
Posts : 814
Posted 3/8/2018 9:00 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.
profile picture
bluelyme
Veteran Member
Joined : Nov 2015
Posts : 5883
Posted 3/9/2018 2:05 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
profile picture
goshawk
Veteran Member
Joined : Sep 2016
Posts : 2653
Posted 3/9/2018 5:00 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
profile picture
MooseSafari
Regular Member
Joined : Jan 2018
Posts : 130
Posted 3/9/2018 5:59 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....
profile picture
WalkingbyFaith
Veteran Member
Joined : Aug 2017
Posts : 6104
Posted 3/9/2018 9:12 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.
profile picture
Dillon's Mom
New Member
Joined : Jan 2017
Posts : 12
Posted 8/26/2018 8:14 PM (GMT -6)
UPDATE: Almost 6 months after my original posting, I want to include an update so that others going through the same immobilizing panic know there IS light at the end of the tunnel. It took me another month after I posted, but I came out of it, and am back on a positive track in my Lyme recovery.

That was the single worst period I have gone through, not only in my Lyme journey but in my life journey. I found my way out of it via a combination of things: getting tests to rule out the other diseases I was afraid of, temporary medication(s) to help me sleep or relax, going (for the first time ever) to a GOOD licensed therapist, listening to music, physical exercise (even when you think it's impossible), going to church (I'd never gone), reaching out to others via this forum, and help from family/friends. And understanding that panic/anxiety itself is a symptom of Lyme and coinfections. Oddly, the LEAST helpful thing was getting tested for Parkinson's, ALS and MS - you see when the tests were negative I just thought that the doctors were wrong, or it was too early to show up!! That's because I was in the throes of panic and anxiety, and had this obsessive thought about other diseases looping in my brain 24/7 that reason couldn't touch.

Understanding what was happening to me and that it wasn't my failing, but rather a biproduct of the disease(s), really helped. Anxiety and panic are powerful things and can take down anyone - it doesn't mean you're weak or unintelligent. Getting rest, being able to sleep, getting exercise helped me to be able to focus and hear the messages and help coming to me. It was a very scary time and I'm so grateful to all those that helped me, including this forum. I just wanted to share my path back from that horrible time so that anyone going thru something similar and wandering onto my original post knows that I had a positive outcome. I continue with my LLMD, currently being treated for Bartonella and mold, managing my symptoms (which still include anxiety from time to time), strengthening my immune system, and fighting the good fight we all are smile
profile picture
Noah2112
Regular Member
Joined : Dec 2017
Posts : 228
Posted 8/26/2018 8:35 PM (GMT -6)
Your muscle fatigue issues sound exactly like what bart does to me in both my legs and arms. Physical therapy helped with me, but I suspect you'll need herbs or antibiotics to knock down the bart first. I'm not a doctor, but that part of your symptoms (and the twitching too) sounds like bart. We can't rule out other conditions though, I recommend you see a neurologist. They'll be able to give you an EMG and an MRI. The MRI should help rule out MS. Also, MS comes in specific attacks the vast majority of the time, not continuous symptoms. What you're going through doesn't sound like MS to me (my aunt has it so I'm a little more familiar with it than most).
profile picture
WalkingbyFaith
Veteran Member
Joined : Aug 2017
Posts : 6104
Posted 8/26/2018 9:24 PM (GMT -6)
Dillon's Mom,

Wonderful update!!! Thank you so much for sharing your experience with us.

I just realized something from reading some of these posts. There were mentions of muscle fatigue. I have had that increasingly this year and really didn't know what to make of it or why it was getting worse. I feel it mostly in my legs, especially if I squat down or if I bend my knees in bed at night or have to walk at an incline. Sometimes when I vacuum, but my upper body is less affected than my legs. I also get shortness of breath with it sometimes.

I didn't realize that could be a symptom of Lyme or bartonella. I thought it was from low MSH, even though I have worse muscle fatigue now than I did a year or so ago when MSH was at the lowest, or that my body was just giving out and I was slowly dying. I hope it really is a symptom of bart or Lyme. Then pushing on with treatment should eventually correct it.
profile picture
sebreg
Forum Moderator
Joined : Jun 2015
Posts : 1925
Posted 8/27/2018 8:06 AM (GMT -6)
Awesome, so happy to hear that update. It did sound like it was bartonella driving some of those symptoms. Anxiety has always been one of my most brutal symptoms, I mean crippling anxiety that takes over my mind and drives me to the brink. I get obsessive and panicky and it literally drives me crazy! As I've treated the infections it has gotten much better, but it can get bad if I'm herxing a lot. Lately treating babesia I've noticed I get extremely bad anxiety from aggressive treatment of that infection.

Good luck with your recovery and congrats on your progress!
✚ New Topic ✚ Reply

More On Lyme Disease

The Low-Down On Lyme Disease

The Low-Down On Lyme Disease

Why It's Okay To Grieve Your Chronic Illness Diagnosis

Why It's Okay To Grieve Your Chronic Illness Diagnosis


HealingWell

About Us  |   Advertise  |   Subscribe  |   Privacy & Disclaimer
Connect With Us
YouTube Facebook Twitter Instagram Pinterest LinkedIn
© 1997-2021 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.