posted
I know the answer to my question is probably very complex, but I am hoping someone can give me simple answer to a very complicated question.
What causes the neurological symptoms such as muscle twitching and tremors? What about the disease, or the bacteria makes my muscles jump and twitch? Or makes me forget everything? I graduated college with a 4.0 GPA, and I feel as though my IQ has dropped 20 or 30 points since I got sick.
I am just wondering how/ and why this happens? thanks!
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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posted
the Lyme spirochetes can attack any part of the body. If it attacks your nerves you can heve nerve pain and/or muscle twitchig and tremors. Unfortunately it also affects the brain and causes brain fog,forgetfullness,etc. It can be reversed if you take abx that cross the blood brain barrier. I did have luck with IV rocephin It took away the brain stuff and muscles twitches. That was a while ago and unfortunately for me some of it has returned. Good Luck!
Posts: 256 | From long island, new york | Registered: Feb 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Here is the answer. It is a quote from Dr. Burrascano's lyme treatment guidelines:
"It is clear that in the great majority of patients, chronic Lyme is a disease affecting predominantly the nervous system." (page 4)
By attacking the nervous system, lyme is able to give you all of these symptoms. When it attacks the central nervous system (the brain), it affects your IQ, memory, speed of thinking, ability to talk, ability to sleep, etc. When it attacks the peripheral nervous system, it can cause muscle twitches, muscle weakness, muscle pain, heart attack, strange sensations like pins and needles, etc. etc. etc. ad infinitum.
I have had friends who became "stupid" due to lyme disease. This all reversed with good lyme treatment.
I had undiagnosed lyme for 10 years before I found a doctor who figured out what I had. Once I got good treatment, all of my symptoms reversed/went away. In March it will be 6 years since I completed my lyme treatment and every single symptom I had has been gone for all 6 years. I am perfectly normal, just like before lyme.
So, the message is to get the very best lyme treatment you can and you can get back to normal. The doc is the key to getting rid of this disease.
Lots of doctors treat lyme disease, but not many know how to get rid of it for someone. Find a doctor who has gotten rid of lyme for at least 3 people. I suggest you look for one who follows the Burrascano guidelines. That is what got me and all my friends well.
I strongly suggest you read and study the Burrascano guidelines so that you will know what good lyme treatment looks like.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Thanks for the info. I too went undiagnosed for many years (13 actually) and was just diagnosed in October. I have found a brilliant doctor who has many, many Lyme patients. I am under his intense, aggressive treatment, but since I am so sick, I only started my first antibiotic a week ago. We have spent the last few months getting my body strong enough to start antibiotics.
TF, how long was it once you started treatment before you completed it? and how long was it before you felt noticeable better? I have read Dr B's guidelines, but thanks for sending them to me anyhow.
I guess I am curious as to what the spirochetes are doing in my brain? It is such a complex disease. It is so reassuring to hear from people who are healthy and doing so well. I am so far from that reality that it gets hard to have faith that I will be there again someday Thank you for sharing.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This explains a lot about what happens with lyme: ---------------
BIOCHEMISTRY OF LYME DISEASE: BORRELIA BURGDORFERI SPIROCHETE / CYST -
Posts: 48021 | From Tree House | Registered: Jul 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Know that viruses can also cause symptoms similar to lyme including neurological symptoms. Some to think of and test for: HHV-6, EBV and enteroviruses.
posted
that is good to know timace since i am positive to EBV and not lyme...so I am beginnings to think it is the EBV that is causing the symptoms. thanks for the info.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I treated lyme disease for 3 years. The first 2 years I was not with a Burrascano type doctor, so I received inadequate treatment for those 2 years.
Then, I wised up and went to a Burrascano doctor. In one year, he treated me for lyme, babesiosis, and bartonella and I was done.
That's why I still hang around LymeNet--to let people know not to stay for years with doctors who treat inadequately. I feel I wasted 2 years treating with a lyme doc who did not know enough to get me well.
I had some improvement during those 2 years, but I was not back to normal by a long shot. That doc did not ever mention coinfections. (I have since found out that he doesn't believe in them! He thinks they are "very rare.") He never tested me for them or treated me for them.
He also didn't know how to recognize when I got a yeast infection from his high dose antibiotics. He thought I had perhaps gotten irritable bowel syndrome.
After 3 months of suffering with this, I called and told him my diagnosis of yeast infection and asked for Diflucan. That did the trick. (I figured this out from the Burrascano Guidelines.)
He never told me to eat an anti-yeast diet. He never told me to exercise. He never changed my meds. He had me on one antibiotic for the entire 2 years.
By reading the Burrascano Guidelines, I saw that my doctor had a very different approach from Burrascano. That made me wonder if perhaps my doctor was wrong and Burrascano was right. I then traveled to hear Burrascano speak. Hearing Burrascano proved to me clearly that my doctor's treatment of me was inadequate.
Burrascano emphasized that the patient cannot get well until all coinfections are treated. He emphasized that coinfections were common and could not be ignored.
He answered a written question that I submitted asking how a patient on high dose antibiotic therapy could get a new symptom--trigeminal neuralgia.
His reply was, "If the antibiotic therapy is inadequate, the disease will continue to progress." That's when I knew I had to switch to a better lyme doctor. My doc's treatment of me was inadequate.
I tell this story to help all those on LymeNet understand how to tell if their lyme doc's treatment is inadequate. And, to tell people not to waste time with these kinds of doctors. Remember, I got this doc's name from a lyme support group.
I know it is scary to change doctors, but you sometimes have to do it to regain your health. When you switch to a great doctor, you will be so glad you did.
So, to answer your question about how long before I began to feel better, it was 9 months. First, my primary care doctor gave me 30 days of doxy. That got rid of the terrible pins and needles sensation that was driving me nuts. But, it came back again as soon as the meds were gone.
Then, I went to a lyme doctor. I was with my first lyme doctor for 3 months while waiting to get in with my second lyme doc. He tried many meds on me, but I didn't notice any difference with any of them (except that the pins and needles again went away as soon as I started meds). This doc also never mentioned coinfections or treated for them either. I got his name from lyme support groups also.
It was 6 months into the high dose mono-therapy with my second doctor that my horrendous fatigue began to get a little better and some other symptoms improved.
I got to about 75% with the second doctor. But, still, I was far from normal. I still couldn't stand for more than a minute or walk more than 2 blocks. I just wasn't in daily, minute by minute agony. That was it.
With my final lyme doctor, I was finally put on adequate therapy (combinations of antibiotics at the Burrascano dosages). I had my first herx. I started experiencing the feeling worse before feeling better routine. I got sick again each time he changed the meds. (That is because with each new med there is a new killing profile and you are now killing germs again.)
He cleared my lyme in 2 months. Then he did bartonella. Then, babesiosis.
The last 5 months of my one year of good lyme treatment, I was totally symptom free.
My story is very common. Most people do not get to an excellent lyme doctor on their first try. There is a learning curve. That's why I emphasize studying the Burrascano Guidelines. It is how you will learn to evaluate your doctor's treatment of you and know when it is time to change doctors.
Posts: 9931 | From Maryland | Registered: Dec 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
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