Lyme.... or what?

Status
Not open for further replies.

Alyrose

New member
Joined
Aug 28, 2020
Messages
3
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
IL
City
Chicago
Good afternoon everyone,

i’m going to try to make this as short as possible but I have to include some details in here. I am currently 30 years old, I am a female. When I was 25 in 2015 I was diagnosed with Lyme disease after seeing about 20 doctors, five hospital stays, over 10 or 15 hospital visits and 10 specialists, five of those specialists being Lyme literate doctors. I finally found a doctor that I like, Dr. Jemsek in Washington DC.

my initial symptoms of which I can remember since it was a while ago and I try to block that time of my life out but, they were dizziness, vertigo, anxiety, tachycardia, palpitations, and a weird sensation on the left side of my body. That included a swelling and somewhat drooping of the left side of my face, a heaviness in my arm hand and leg and foot on my left side. I was able to get MRIs done CTs Scans done bloodwork an emg scans done bloodwork done an EMG and Of course nothing was wrong with me on paper. I don’t know if anyone else has gone through Lyme Disease or what havoc it has on your body and the treatment was indescribable.

I started treatment in October/November 2015 and within six months I had moved out on my own and was feeling better. I continue treatment through 2017 and abruptly stopped because of financial issues due to a divorce. I was feeling great I was at my ideal weight I still needed to take anxiety medication for the remainder of whatever was left over from the Lyme Disease and I had occasional vertigo episodes with dizziness but I was able to lead a great life raise my my son I started treatment in October/November 2015 and within six months I had moved out on my own and was feeling better. I continue treatment through 2017 and abruptly stopped because of financial issues due to a divorce. I was feeling great I was at my ideal weight I still needed to take anxiety medication for the remainder of whatever was left over from the lime disease and I had occasional vertigo episodes with dizziness but I was able to lead a great life raise my son and deal with everything.

Fast forward to November or December 2019 where I started to get some vertigo and dizziness episodes as well as my panic attacks with anxiety came back. I brushed it off as the holidays stress and ongoing custody battle with my sons father. So I dealt with it for a few months fast forward to when the pandemic started now I’m working from home and the stress and anxiety of that cause a lot of issues with my sons father and I and we were constantly battling and arguing and fighting and I noticed some of my previous Lyme symptoms start returning. I started having dizziness and vertigo episodes that were really bad, I start having my palpitations and racing heart return, I almost passed out a couple times, and then here goes the weakness or whatever sensation I was feeling on the left side of my body.

Everything was OK up until August of this year. I had went to the eye doctor for the ocular migraine‘s that I was having and he cleared my eyes, I’ve been to my cardiologist numerous times with several heart monitors which showed nothing abnormal even though I was Terrified of the fact that I could have a fib. I went to my neurologist for the dizziness and vertigo and she put me in physical therapy which didn’t really help. That was all in June and July. At the beginning of August I had a lot of stressful things happen and one day it felt like the whole left side of my body was pretty much having a stroke and I was taken to the ER I was given TPA and I was in the ICU for monitoring for one day and released from the hospital after three. They did MRIs CT scans, Monitored my heart and made sure that this wasn’t a stroke or a blockage or anything like that. I had an episode of the weakness of my left side when I was in the hospital and was taken down for a repeat CT scan which were all normal. So I was released after three days. I was told they were complex migraines or hemiplegic migraine’s and followed up with my neurologist.

I am supposed to travel to Washington DC in 2 1/2 weeks to see Dr. Jemsek and his team again because there’s a possibility my Lyme Disease is back worse this time than the first time. The fact that I didn’t finish my treatment the first time because of financial issues and also because I was feeling normal again is a problem. However I can’t get the idea of having a less out of my mind. It was a fear of mine back in 2015 when everyone would Google their symptoms and that’s what I would see constantly, hence why my neurologist gave me an EMG test at 25 years old. However I did have a friend of mine from high school whose older brother was diagnosed at 29 with bulbar, excuse me if I spelled that wrong, ALS. So I saw him at a very young age deteriorate from having an amazing life.

Now at 30, I’m going back in for a repeat EMG in a few weeks and depending on that my neurologist may want to do an EEG to see if I’m having mini seizures. This is all a lot all at once especially when I was pretty much normal in the gym eating keto and doing everything a healthy person should up until April of this year. It’s only in May or June that I noticed my anxiety panic vertigo dizziness and the weird sensations on the left side occur again.

Weird thing is, when I was in the hospital I almost felt a sensation on my right side as well in my hands and my feet that was more of a tingling and not really the heaviness as I would feel on the left side. I’m not sure what weakness feels like but I find myself constantly looking for atrophy on my left side and I’ve noticed random twitching but they seem to be in different parts of my body. I know twitching was one of my Lyme symptoms as well as a laundry list of symptoms I can’t even remember anymore.

The neurologist in the hospital just this week gave me a full body exam and said he doesn’t feel there’s any evidence of ALS or any type of degenerative disease. I told my neurologist and she said she’d be happy to do the EMG but doesn’t feel as though the symptoms I’ve presented or I felt besides a weakness would be in correlation with ALS.

my question is what the hell? And 30 years old I feel like I can’t function because of my constant fear of ALS. I’m constantly checking myself and my reflexes and my muscle mass and I feel like this is taking over my life. It’s affecting me as a mother as a spouse as a daughter as a sister as a friend as a worker. The more I Google the more I’m convinced that I’m developing this. I have turned to this as a last resort because I truly don’t know what to do. Or where to go or what to say or anything anymore.

Just as a disclaimer I am not trying to disrespect anybody with this illness and I’m not trying to look for Sympathy. Just anyone that’s gone through this felt this way we could help in anyway in a positive manner. I post this with respect.

Thank you!
 
Last edited by a moderator:

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,388
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
i am sorry you are having such worrisome symptoms. It does not remotely sound like ALS though as you were apparently told by your hospital neurologist in person and by your own neurologist On the phone

we do ALS/ MND here and I am quite sure that the emg will confirm you don’t have it.
good luck
 

Alyrose

New member
Joined
Aug 28, 2020
Messages
3
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
IL
City
Chicago
I'm sorry don't know why certain things posted twice. My apologies, I don't know how to edit it.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
3,332
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hi, this is a HUGE post and many parts of it was duplicate sentences/paragraphs- I have removed for the most part. If you have specific questions, please be brief so folk here can answer them, as it's a bit difficult to figure out what exactly you are asking.

Perhaps your emg will provide you some reassurance as you search for reasons for your symptoms. ALS is a particular spectrum of symptoms, and your post doesn't seem to include the hallmarks.
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
3,977
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
There are Facebook Groups for Lyme Disease but please don't get sucked in by doctors who bleed you dry with tests. If they don't accept your health insurance, run away fast. You're better off dealing with a multidisciplinary facility such as Mayo Clinic where they can send you to the specialists you need and share records.

Best wishes.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
8,928
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
By way of background, Aly, I had Lyme myself, and my husband had ALS. I have personal and professional experience relating to each.

You may call Dr. Jemsek an LLMD, I will call him a quack who moved to DC after a settlement agreement in which his NC license was inactive for over a decade, following charges related to inappropriate use of antibiotics in Lyme, use of a hyperbaric chamber to treat Lyme, inadequate staff supervision of such treatments, etc.

Long-term Lyme treatment is about the money, if you read peer-reviewed research (not cherry-picked advocacy portals) about the subject. Leading LLMDs' records are littered with misconduct (e.g. Dr. Stricker's documented NIH-sponsored trial data fabrication). The reason that their practices are cash pay is not the blindness of the scientific establishment.

A divorce and custody battle are very stressful events that could trigger perceptions of symptoms. I will strongly advise you to save your own money (not to mention your health; antibiotic treatment has its own risks) and move on from the LLMD world. That you admit to a new obsession with ALS in the face of no evidence for having it suggests anew that you could benefit from counseling, not more antibiotics. As for your concern that your Lyme may have re-emerged because you "didn't finish the treatment," LLMDs are expert at making that argument -- it pays their bills.

I truly believe that if you undertake counseling and possible medication to address all the stresses in your life, your physical symptoms will abate to the point that it will be much easier to parse what, if anything, you require diagnosis or treatment for. To go on as you are, struggling with the tremendous burden of health anxiety, is the greatest risk to your health and happiness that you have described.

Best,
Laurie
 

Alyrose

New member
Joined
Aug 28, 2020
Messages
3
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
IL
City
Chicago
Thank you for all of your replies. I just got my hospital documentation today. I will attach a picture of the hospital neurologist findings. Apparently my exam shows hyperreflexic left arm which is the side that’s bothering me. But I’ve been getting twitches on the left side, fingers, arm, thigh, calf. I also have some twitched on the right side too. I’m kind of at a loss. I googled als in 30 year olds and there are cases, I read one where a girl presented kind of like me and she progressed fast and the outcome was devastating.

My point is, my first post Was a lot about lyme and what has happened to me this year however lately it has been headaches, some blurry vision at times, the left arm/hand heaviness feeling and left leg/foot heaviness. I’m still able to walk on my tippy toes and my heels. Also get a weird puffy sensation on my left side of my face.

Not sure if the fear or everything surrounding the thought of als can manifest physically Or idk.. I’m hoping for the best but I’m scared.. I have a 9 year old son..

I have an emg scheduled for sept 11th. My last one was clean in April of 2015. I’m preparing myself for the worst this time around.

Thanks everyone, will update when I get the emg I guess..
 

Attachments

  • image.jpg
    image.jpg
    2.6 MB · Views: 41

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,697
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
You see the neurologist is trying to tell you that you do not have ALS. You don't need to pursue this as you have no ALS symptoms at all. Why don't you let your doctors decide what you have and what you need to do instead of trying to steer them to what you have decided is going on? Please let this go.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,821
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Central NC
Alyrose, per your last sentence...

"Thanks everyone, will update when I get the emg I guess."

Until then... (Sept 11th). Post the Summary/Conclusion at the bottom of
the report.

Ten days to go. Hang in there.
 
Status
Not open for further replies.
Top