It's been a while since I've been here. I was very active back in 2006 thru 2013 for Chronic Lyme. I was diagnosed after spending a year going to Dr.'s for bodywide fasiculations (muscle twitching) myoclonus, difficulty walking, cramping in limbs, severe brainfog, etc.,
Finally after visiting both ALS slinics in SanFrancisco and having that ruled out my internist sent me to an oncologist. She thought maybe Cancer was hiding out somewhere in my body. The oncologist did a Petscan and saw no sign of cancer but suggested I get a bloodtest for a possible tick bourne disease. His very good friends wife had Lyme disease. Sure enough I was positive for lyme by CDC
I ended having a port put in my chest and did IV rocephin for one year. I also did six months of Penicillin shots and other antibiotics for an additonal year. Every symptom disappeared. I failed to mention that the reason I ended up at ALS clinics is I had severe bodywide fasciculations (muscle twitching).
I have had to treat every year for at least 8-12 weeks for occasional symptoms that rear their ugly head since I was infected in 2005. I was rebitten two years ago and had a bulls-eye rash with that and treated for 30 days with antibiotics.
Fast forward to Aug 10th of this year I started getting muscle twitches again. They are now body-wide. I am having difficulty swallowing pills and choking on my own saliva while asleep at night. Also difficulty with my right foot walking. I have muscle atrophy in my right foot which no Dr.'s seem the least bit alarmed about. I have a very bad spine and all the neurologists or neurosurgeons I've seen over the years says it's degenerative disc disease.
I've had three cervical fusions in my neck and have been told I need lumbar disc surgery.
I have serious concern that it's ALS and made an appt to see the neurologist who has seen me in 2005 and 2015 to rule out ALS. He was not very nice, I saw him two weeks ago. He never bought into the Lyme disease and said I don't have ALS. I want to believe him but never had the swallowing issues before or loss of hand grip. He said the atrophy was not there in 2015 so that's new but he felt it was from my lumbar issues. He did a quick Neuro on me. He said it's not ALS and I am very relieved.
In the meantime I am now being treated for lyme by a new practioner(mine left SanFrancisco). I guess my questions to you would be have you had difficulty swallowing? gait issues? muscle twitching? Thank you in advance...
Posted by TF (Member # 14183) on :
When I had lyme, I choked on my own saliva regularly. This was while awake.
I believe that lyme often affects the "flap" that is to cover the windpipe so that no saliva goes down it. It seems the flap would not close well, so if I had my head back, the saliva would go into the windpipe and cause a horrendous coughing fit that would last 15 minutes and scare all my office coworkers.
Never had the other symptoms you mention. I had extreme muscle weakness as my main problem for 10 years. I could only stand for 1 minute, hold the phone to my head 30 seconds, and couldn't hold my mouth open to have my teeth cleaned.
All my symptoms went away when I switched to a Burrascano type doctor. It is now about 12 1/2 years since I completed my lyme treatment and I am still symptom free, enjoying my life.
I was rebitten about 3 years after my cure and went back to the same doc and got 30 days of excellent treatment with 3 antibiotics. It worked!
Posted by sfcharm (Member # 9392) on :
up
Posted by MattH (Member # 30846) on :
I had numerous swallowing issues and after several courses of ABX they mostly went away. I might experience it every two or three months and to a much lesser degree.
I used to have several bottles of water in my car because I could eat a piece of fruit or nuts in the car and start choking.
All the Best, MattH
Posted by dbpei (Member # 33574) on :
If you are on Face Book, there is going to be an interview this morning at 10 a.m Eastern time between a well known LLMD and a neurologist that specializes in tick borne illness and autoimmune disorders.
I hope you can join in and perhaps it will provide an opportunity to ask questions directly.
I am so sorry you are going through this battle. It sounds like perhaps that most recent bite triggered things. Hoping you will get some good guidance and see better days ahead. The fact that you got better once, after such a long fight, is a good indicator that you can beat this again. God bless.
(editing out name of Lyme-treating doctor)
[ 09-20-2017, 04:12 PM: Message edited by: Robin123 ]
Posted by bcb1200 (Member # 25745) on :
Have you checked for Bartonella?
Bart is common with Lyme and can cause your symptoms.
Posted by minimonkey (Member # 8693) on :
I had horrid muscle twitches when I was first diagnosed (in 2005) and am having them again now -- I just got a positive test this past week (relapse or reinfection... not clear which, though I don't recall a recent bite). Also gait issues and occasional problems with swallowing, amidst a host of other symptoms. These symptoms mostly resolved after treatment the first time ... hoping they will again. I'm also in the SF Bay Area, btw.
Posted by Badtick (Member # 9794) on :
Many of your symptoms resolved for me with babesia treatment.
Posted by minimonkey (Member # 8693) on :
I just saw my LLMD, and he happened to mention a Lyme patient of his who has both hand and foot atrophy. I immediately thought of this post... so thought I would tell you that my doc has seen this happen.
Posted by farraday (Member # 21494) on :
I was diagnosed with "early stage Parkinson's" , by a very well known neurologist after he examined me. My LLMD said it is "Parkinson's Syndrome" and will resolve with treatment. I did have a swallowing tests and was sent to someone who essentially showed me how to massage my jaws and throat.Not much help. I have learned to eat small pieces, always have a drink ready. My son did the Heimlich on me in a restaurant, saving my life. People die when they rush into a restroom when they are choking. Don't do that. Try to relax and then cough it up no matter where you are. Have a sign with your family to show them you need help. Have them learn the Heimlich. Also take small sips when you drink...to relax your throat. My hands, especially my right one, tremble when I'm trying to do something or think and talk for too long. My feet are numb, reflexes very poor, blood pressure widely fluctuating. I have a poorer memory every day...almost like Alzheimer's. I'm confused and exhausted. I'm often dizzy and fall. My husband, too. All Lyme, our doc says. My mom and my cousin both died of ALS. I always wonder if they had had untreated Lyme. There is a genetic link of some sort going on, too.
Posted by Andreading (Member # 51004) on :
I was just recently diagnosed but only have bands 31 and 41, as well as an indeterminate for 39. It started in September with pins and needles in my hands and feet, feeling faint, and my heart racing for four days straight. I thought I was having a stroke! I had these feelings before in the previous year but only on the 4 or 5 times... when I drank or did Botox😂My regular pcp put me on two weeks of doxy and all hell broke loose... my fingers started twitching, then muscle cramps/weakness and extreme exhaustion. He took me off the doxy saying the cdc only recommends two weeks...(he’d only given it to me since I informed him I had picked many a tick off of myself and my dog this summer.) Now I’m back on doxy after a 5 week break and I cannot tell if my symptoms are worsening or staying the same. I do know my anxiety is through the roof!!!! Nights are the worst I had to start taking medication for sleep and anxiety. I believe it’s one for parkinsons patients. Anyhow, I have an EMG scheduled in Feb as I did have some hyperintensities come up on an MRI. Has anyone else had Lyme show up in an MRI? So frightened right now! And I just want these tremors, muscle cramps, and arthritic pain to go away!!!!
Posted by TF (Member # 14183) on :
Breaking up the above post for easier reading by all:
I was just recently diagnosed but only have bands 31 and 41, as well as an indeterminate for 39.
It started in September with pins and needles in my hands and feet, feeling faint, and my heart racing for four days straight. I thought I was having a stroke!
I had these feelings before in the previous year but only on the 4 or 5 times... when I drank or did Botox😂My regular pcp put me on two weeks of doxy and all hell broke loose...
my fingers started twitching, then muscle cramps/weakness and extreme exhaustion. He took me off the doxy saying the cdc only recommends two weeks...(he’d only given it to me since I informed him I had picked many a tick off of myself and my dog this summer.)
Now I’m back on doxy after a 5 week break and I cannot tell if my symptoms are worsening or staying the same. I do know my anxiety is through the roof!!!!
Nights are the worst I had to start taking medication for sleep and anxiety. I believe it’s one for parkinsons patients.
Anyhow, I have an EMG scheduled in Feb as I did have some hyperintensities come up on an MRI. Has anyone else had Lyme show up in an MRI? So frightened right now!
And I just want these tremors, muscle cramps, and arthritic pain to go away!!!!
Posted by TF (Member # 14183) on :
Yes, my lyme showed up in my brain MRI.
It showed up as 2 UBOs (unidentified bright objects). The report said that "lyme cannot be ruled out."
These UBOs are usually areas of hypoperfusion from inadequate bloodflow (caused by lyme which causes inflammation).
I was happy to have this finding as it explained why I felt like I was getting Alzheimers!
I was on anxiety meds for years because of undiagnosed lyme (diagnosed as "menopause.")
Now, a brain MRI shows no abnormality. So, just know that the effects of lyme on the brain can be reversed with good treatment.
And, I went undiagnosed for at least 10 years!
Posted by Robin123 (Member # 9197) on :
Andreading, you could start your own new post and people will respond. Just click on Post New Topic at the top. And please break up the post into a couple lines at a time for easier reading for many here.
Posted by sfcharm (Member # 9392) on :
Hi all,
Just an update. I took a month of Doxycyline, had terrible foot and toe cramping. It was one antibiotic I didn't take much in all my years of treatment. The plan now is to go on Rifampin and Clarithromycin for the next 90 days. I've been told I could end up with a port in my chest doing Rocephin IV as well. I did one year of Rocephin IV in 2008. I have chronic lyme (took Dr.'s over 1 year to diagnose me). I just had an MRI for Lumbar pain last week. I am seeing a neurosurgeon at Stanford and UCSF. I may have to have lumbar surgery. I've been told I need it but I honestly feel it could be lyme. I'm not doing surgery till I do at least four months of antibiotics to see if it makes a difference. It did in 2015 and bought me two years of no back surgery. No one has to sell me on chronic lyme, I've had it for over 10 years and tend to have to treat every year for a minimum of three months. Thank you all for your replies, it was helpful and very supportive. I very much appreciate it.
Posted by TF (Member # 14183) on :
Breaking up above post so all can read it:
Just an update. I took a month of Doxycyline, had terrible foot and toe cramping. It was one antibiotic I didn't take much in all my years of treatment.
The plan now is to go on Rifampin and Clarithromycin for the next 90 days. I've been told I could end up with a port in my chest doing Rocephin IV as well.
I did one year of Rocephin IV in 2008. I have chronic lyme (took Dr.'s over 1 year to diagnose me).
I just had an MRI for Lumbar pain last week. I am seeing a neurosurgeon at Stanford and UCSF. I may have to have lumbar surgery. I've been told I need it but I honestly feel it could be lyme.
I'm not doing surgery till I do at least four months of antibiotics to see if it makes a difference. It did in 2015 and bought me two years of no back surgery.
No one has to sell me on chronic lyme, I've had it for over 10 years and tend to have to treat every year for a minimum of three months. Thank you all for your replies, it was helpful and very supportive. I very much appreciate it.
Posted by Andreading (Member # 51004) on :
Sfcharm... how did they rule out ALS? EMG? I’m still freaking out over here, as I️ notice atrophy on my right inner thigh and ankle.
Posted by Phoiph (Member # 41238) on :
sfcharm~
I had many severe neurological symptoms over 8 years...among them were consistent muscle weakness and fasciculation.
I was considered an "antibiotic failure", but consistent, mild hyperbaric treatment ultimately cured me. I have been very well and med-free for over 5 years.
Mild hyperbaric is especially good for neurological conditions. It is known to release stem cells, quell inflammation, and promote healing of neural tissue. It empowers and balances the immune system so it can begin function properly again and take care of pathogens.
There are many people on this forum who have benefitted greatly by mild hyperbaric treatment mHBOT using a home chamber. You can read more on the "Mild Hyperbaric Thread" if you are interested. You can also read "The Oxygen Revolution", by Dr. Paul Harch for more background on the treatment.
For many with chronic Lyme, the answer turns out to be less about "bug chasing" and more about giving the body the elemental resources it requires to turn itself around.
Posted by bluelyme (Member # 47170) on :
bvt has worked to halt my als symptoms . phioph is right many ways to skin this cat scratch fever