This is just a simple poll, I don't want to debate the CAUSES of these symptoms, I'm just wondering if there's anyone out there who has recovered from these symptoms:
- muscle weakness, to the point of having a hard time walking
- limb numbness, pain, etc.
- balance issues
- other MS-type symptoms
Just looking for some encouragement. Please also share what you did to get better. Thanks.
Posted by TF (Member # 14183) on :
Bryan, my first and continual main symptom of my lyme disease was extreme muscle weakness.
The first episode of this came on me out of the blue and it seemed unbelievable. All of a sudden when I woke up one day, I could only stand about 1 minute. I could only walk about 1 block.
Just like it came, it left about 2 to 4 weeks later and I was my normal self again. I hoped that this extreme weakness would never return. However, it kept returning, with totally normal periods in between.
The first 5 years of my lyme disease was episodic. I would get the extreme muscle weakness as if someone had turned on a switch. Then, after about 7 months, I would wake up one day and it would be totally gone. That would last about 5 months only to start over again.
So, one day I could be climbing 7 story high Mayan ruins on ladders, etc. in Guatamala and I could wake up the next day only able to stand for 1 minute.
After 5 years of this episodic muscle weakness, the symptoms became constant. So, I was always so weak that I had to sit down and rest at least twice while getting ready for work. Just getting ready for work totally exhausted me so that I just wanted to crawl into bed. Instead, I would force myself to get in the car and drive to work, crying the whole way because I felt so totally exhausted.
To hold my arms up to fix my hair was tough. My arms got too weak within about 30 seconds. I couldn't hold the phone to my head for over 30 seconds either. I timed it. My arm muscles would cry out in pain.
And, I could not hold my mouth open to have my teeth cleaned. It would become painful to try to hold my mouth open.
My legs shook like jello if I tried to walk down a flight of stairs. I dreaded rising up from a chair or stepping up a curb because of the huge amount of energy it required of my muscles.
I had this constantly for 5 years before I was finally diagnosed with lyme disease. I added other symptoms, but they were things like severe dental pain, false menopause, memory problems, word-finding problems, derealization, trigeminal neuralgia, episodes of sound sensitivity, inability to sleep, nausea 24/7, feeling of being stabbed by thousands of pins, etc. and one major CNS episode in which I could not move any part of my body at all and needed help walking for about an hour after the episode ended.
I never got any of the other symptoms you named.
This extreme muscle weakness was lyme attacking my body's nervous system. Specifically, it is attacking the nerves that attach to muscles. There is really nothing wrong with the muscles themselves.
The proof is that one day I had no muscle strength and the next I would be perfectly normal.
I was cured of lyme, babs, and bart over 12 years ago now by going to a doc who followed the Burrascano protocol. For lyme, he treated me with amoxicillin (high dose) with probinecid and flagyl to attack the cyst form of lyme.
All of my symptoms went away.
I credit the Burrascano exercise program for restoring me to normal in addition to the great antibiotic treatment I got.
At my first appointment with my final lyme doc, he told me that I would NEVER get well unless I did the Burrascano exercise program--one continuous hour of weightlifting every other day, a full body workout each time. Use light weights and do numerous repetitions.
This type of exercise restores the compromised immune system to normal.
Telling me to lift weights for 1 continuous hour was like telling me to climb Mt. Everest! I could hardly walk down the stairs to the basement where my husband had a weight bench and weights.
My first attempt at this type of exercise was doing one bench press with an empty bar. I was left panting after one lift.
Then, I tried one leg lift with no weight on the machine. One crunch and that was the end of my first weightlifting attempt.
However, I persevered. Eventually, after a number of months, I was able to lift weights for 30 minutes. I would do 3-5 minutes of light arm exercises, then a few leg lifts, then crunches, then back exercises, then bench press a few times, and over and over again exercising the various muscle groups.
Eventually I got up to the one hour requirement. Eventually I could add more and more weight to the bar/machines. This is when I really realized that something big was happening!
After each weightlifting routine, I would have to go to sleep within an hour. So, I did the weightlifting in the evening. Then, I could just roll into bed when the need to sleep hit me.
I began to develop muscles. I began to get strong. The weakness slowly left me over quite a few months and it has never returned.
I had this for so long that it affected my mind. I didn't think I could take a walk due to all the times that I became stranded over the years if I ended up in a situation where I had to walk any distance. After I recovered from lyme, I feared taking a walk and didn't know why. I had to figure out that this was a holdover from all the years that I had been unable to do it.
All told, I had undiagnosed lyme for at least 10 years. The extreme muscle weakness was my main symptom that entire time.
If you look at the lyme symptom list in Burrascano's Guidelines, page 9, you will see: "Obvious muscle weakness." So, it is a known lyme symptom.
I believe that in many cases, MS is lyme. The symptoms are identical and so are the test results, such as MRIs of the brain. (I had 2 UBOs--unidentified bright objects--show up on my brain MRI prior to lyme diagnosis. My brain MRI is normal today. They are gone!)
So, I hope my story encourages you that lyme is certainly able to cause all of the symptoms that you have named. And, following the Burrascano protocol is able to cure a person of all of these symptoms.
Just remember that the Burrascano protocol is not just antibiotics. It is also the weightlifting requirement and the rules about no smoking or drinking, getting rest, taking supplements, eating the anti-yeast diet, etc.
Posted by BryanRosner1 (Member # 49076) on :
Great info TF. Thanks so much.
My problem is that I've done a ton of stuff and followed the B protocol, too. There is some underlying thing that isn't allowing me to get better. Living at high altitude? High iron burden? Genetics? I'm trying to figure it out.
Posted by Pocono Lyme (Member # 5939) on :
Just my experience but maybe some things to check into. First, I had muscle wasting which stopped after good Babesia treatment.
I still had muscle weakness though. Despite exercise, it continued. Finally what helped was treatment for adrenal exhaustion, thyroid replacement and testosterone replacement. Adrenals tested low (best test IMHO is the saliva stress test), testosterone tested low and thyroid was, by appearance, in normal range though replacement helped greatly.
Now, it's muscle pain from using those muscles that haven't had such a workout in sooo long.
Posted by Robin123 (Member # 9197) on :
I just watched a DNA analysis session on the Genetics Summit. You can get your full genetics testing at www.GoEvoMed.com. It will show if you have any weak genetics. See notes I posted on your other query post here.
TF made a good post here.
Posted by HW88 (Member # 48309) on :
I had/have all of those. With each 'crash' I would lose all strength in my quads. There were days I had to crawl to the bathroom and even that was tough. My husband had to carry me. NOT FUN!!
With treatment mine has significantly improved. The symptoms rotate through still, but not as much and not as intense.
Hoping things get better for you! Keep plugging away. I feel like we are all onions and we just keep finding things to peel back the layers.
Posted by Bartenderbonnie (Member # 49177) on :
Hi Bryan,
TF 's reply was like reading my journal from last summer, ouch. Very painful memories but very accurate.
I would wake up every morning with no sensation in both arms. Scary. Face and nose totally numb. Feelings would come back about 5 minutes after waking.
I ended up in ER for paralized legs later. Diagnosised with transverse myelitis.
Vertigo at Clevand Clinic.
Every researched article I read stated Lyme as a possible cause. No doctor would agree.
Along came polymyalgia, a painful muscle disorder, then temporal arthritis, a painful inflammation of small arteries in neck and head. They usually appear together.
Do you have painful skin on scalp? Tinnititus? Pain behind eyes? Headaches?
After 4 years of sickness, great muscle loss below quads, inside and outside of knee area. Also below biceps, from shoulder down to elbow. Also, crater-like holes of missing muscles in hip area.
Fast foward to present. Finished 8 months of antibiotics. Knees are normal. Hips are normal. Arms needs lots more work. But I feel so much better !
I recently added weight training only because I was finally able to do so. This is very important, as TF tries to emphasize to everyone.
This is what helped me, hopefully you too.
Epsom salt baths (muscles LOVE these) Antibiotic protocol TIME Sleep Diet Weight training IVIG
P.S. Also, have you noticed any new bite marks on your body, from any kind if insect ? You might have been re-infected.
Hope you start feeling better soon. ❤️
Posted by BryanRosner1 (Member # 49076) on :
Bartender Bonnie, I have many of those same symptoms now:
Tinnititus Pain behind eyes Headaches face numb, etc.
Glad to hear the standard anti-microbial treatment worked for you. Good clues in my situation too.
Posted by Badtick (Member # 9794) on :
You wouldn't by chance be supplementing with any type of B6?
I have had all of the symptoms you describe. Turns out it was nerve damage from taking a fairly small amount of P5P. It took me nearly a year to figure it out. I am recovering slowly.
Posted by BryanRosner1 (Member # 49076) on :
All of these symptoms started when blowing my nose and irritating a vein in my neck. It is definitely related to vein irritation and blood not escaping the brain well enough.
Posted by lookup (Member # 44574) on :
Homeopathic Ledum palustre 6c three to four times a day for 2-3 days will absorb blood in the tissues. (Wild Rosemary in homeopathic form is called Ledum)