posted
I was wondering what is considered major neurological involvement in Dr B's Guidelines. Is peripheral neuropathy considered major? Thanks.
Posts: 142 | From Midwest | Registered: Sep 2015
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The 3 terms he uses to explain "major neurological involvement" are all describing inflammation/infection of the brain. It would take a doctor to diagnose you with any of these 3 brain conditions.
So, these are serious mental disorders in which the brain is not able to function.
Peripheral neuropathy is when the nerves at the furthermost extremities (hands, feet, arms, legs, etc.) are giving false sensations such as burning, tingling, numbness, etc. Diabetics often have this. It does not involve inflammation of the brain.
You basically have to read the Burrascano Guidelines with a medical dictionary in front of you!
See page 6 where Burrascano says that a SPECT scan of the brain will reveal whether or not a patient has Lyme encephalopathy. It will show the disfunction of the brain.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I get visual disturbances when I can't see for about a hour at a time. This happens to me quite often, maybe a couple of times a week. It's bad when it happens at work because I can't see to drive home and I have to just sit there until it passes. I also am having a lot of trouble thinking of the words for things. Could this mean brain involvement?
Posts: 142 | From Midwest | Registered: Sep 2015
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posted
(RE: prior post) But possibly not major brain involvement?
Posts: 142 | From Midwest | Registered: Sep 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Visual disturbances could be from lyme attacking the optic (eye) nerve. Any nerve that lyme attacks, that nerve will not work properly.
So, for example, in the movie "Under Our Skin" a man says that he has been blinded by lyme hundreds of time.
If you just get blindness but your brain is working just fine at the time, then I would think that this is lyme attacking the optic nerve and not some sort of brain disfunction such as encephalopathy.
However, having a lot of trouble thinking and word search (searching for the right word, for people's names, etc.) means brain involvement and can be indicators of inflammation in the brain.
This is very common with lyme. I had it. It also gave me memory problems and some derealization, where I got strange thoughts and had to "yell at myself" not to act on the strange thought.
For example, when stuck in rush hour traffic, I thought, "You don't have to keep hitting the brakes every time the car in front of you does. You can just float through that car."
So, study the list of brain symptoms in Burrascano and make a list of all that you have.
For example:
Confusion, difficulty thinking
Difficulty with concentration, reading, problem absorbing new information
Word search, name block
Forgetfulness, poor short term memory, poor attention
Disorientation: getting lost, going to wrong places
I had most of the brain symptoms and nearly every single head symptom--
episodes of sound sensitivity, temporary loss of parts of my visual field, various facial pains (trigeminal neuralgia, bilateral bells palsy, dental pain, etc.), neck pain (often a sign of encephalopathy). And on and on.
If you are trying to figure out if you have chronic lyme disease, I would say that if you have had lyme symptoms for 10 years, you have chronic lyme disease.
If lyme has affected your brain's ability to function, and you have been sick at least one year, you have chronic lyme disease.
I had a scan of my brain, and it showed 2 UBOs (unidentified bright objects). This is consistent with lyme in the brain. It is caused by lack of adequate bloodflow to various parts of the brain due to the inflammation lyme causes.
So, treat the lyme, the inflammation in the brain goes away, and you get your normal brain back.
But, you don't want to let this situation go on for too long. Permanent damage to the brain is possible. Still, I got my normal brain back once I got good lyme treatment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
OK, thank you very much. I have an appointment with a dr. who can test me on Monday. I have another appointment with a good LLMD but I can't get in until June 2016. I'm just trying to figure out if the treatment is likely going to be very bad or if I should just hold off on treatment until June until I can get in to see the specialist. I don't want to mess this up. I don't want to treat it wrong while waiting for the specialist and get myself messed up even worse. I am very sorry about your illness. I hope you are doing better.
Posts: 142 | From Midwest | Registered: Sep 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I am cured. I got rid of lyme, babesiosis, and bartonella over 10 years ago now. I did it by going to a lyme specialist who follows the Burrascano protocol.
From what you have said in other posts, I believe your lyme disease is progressing. For example, you developed peripheral neuropathy that you never had in the 10 years that you had symptoms.
This is an advancement of the disease, not herxing. Herxing is a temporary reaction to good antibiotic therapy. It doesn't go on month after month.
Now you are naming other brain problems. So, your case is not mild.
If you wait until June 2016 to see a lyme doctor, you could be much worse then compared to now. I hope you can figure out a way to see the doctor I recommended to you. He can see you within days. And, you will get good treatment.
If you try to be treated for lyme by a doctor who is not a lyme specialist, your treatment will be inadequate. In other words, it will be a waste of time and money.
I went to a doctor who had a regular medical practice but he also treated lyme long-term. (He was recommended to me by a lyme support group leader. He took insurance.) I took his antibiotics for 2 LONG years. Then, he told me to stop and see what happened.
Within 2 weeks, I was as sick as I was in the beginning--mentally and physically.
He had me try and stop two different times. Same result each time. So, he told me that it looked like I would just have to be on antibiotics the rest of my life!
Then, I began studying the Burrascano Guidelines. I saw that my doctor was not doing many of the things Burrascano said to do. For example, he had me on only one antibiotic for lyme disease. It was a very high dose, however. Burrascano says it takes at least 2 different antibiotics taken together to kill lyme.
Lyme can evade any one antibiotic by changing forms. For example, in response to the med I was on, it will change into the cyst form and just wait for you to stop the med.
Then, I went to hear Burrascano speak. I got to ask him a question about my case. How could I develop a new, terrible symptom while on this high-dose antibiotic?
(The new symptom was trigeminal neuralgia. You feel like your one side of your face is being electrocuted. Unbearable pain.)
Dr. Burrascano's response was astounding. He said, "If the therapy (meaning lyme treatment) is inadequate, the disease will continue to progress."
So, my lyme was getting worse under this doctor's care!
I then found a doctor who followed Burrascano. He said to me at the first appointment, "Congratulations, you have succeeded in turning all of your lyme into the cyst form."
That is not something to be congratulated for. It is saying, in effect, "you wasted the last 2 years taking this antibiotic."
I tell you this so that you see that to stop this disease, you MUST get to the best lyme specialist you can afford. Your brain is at stake.
This disease(s) is so complex that it takes a lot of expertise to know how to treat it. And, what I have learned in my over 13 years of being around this disease is this:
Many doctors treat lyme disease, but very few know enough to get rid of it for a person. You have to find one of those few.
The doc is the key to getting rid of this horrendous disease. The doc is the key. I can't emphasize that enough.
If you let a non-lyme specialist treat you for the next 9 months, you could destroy your gut with his antibiotics and get no benefit regarding lyme. That is what happened to me. (His treatment gave me yeast in my gut and he didn't recognize what the problem was.)
Would you let a doc who does not specialize in heart problems treat your heart for 9 months while you wait for a cardiologist to see you?
Well, your brain is at stake here, and your gut, etc.
You have a lot of symptoms that point to lyme disease. I can't think of any other disease that would give you these symptoms. So, I think you seriously have to work on seeing a lyme specialist as soon as you can. Don't settle for a June 2016 appointment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Enceph.
Not being able to bend your spine.
Loss of bladder and bowel control.
Loss of speech. Either physically speaking the words, moving your mouth, or even finding the words.
Disorientation.
Bell's Palsy.
Paralysis on one side of your body.
Not being able to pick things up, or hold things.
Unbalance. Falling over. Tipping to one side while walking.
Drooling. Not being able to swallow food or water. Choking on your food.
The head bob.
Things like a loud noise, setting your arms and legs to fly off in all directions.
Uncoordinated twitching of muscle fibres all over your body. If you look like you're tweaking, and loud noises or lights set if off...neurological
How about trying to walk and not being able to coordinate your limbs to move. And when you talk, your limbs move in sync to your words. It's some kind of martian break-dancing, lol. At least mine was.
Failing reflex tests at the docs. Being hyper reflexive or hyporeflexive.
All signs of enceph in me.
Lesions on the brain or spine.
Not remembering your name, or where you worked or where you lived or how to get dressed.
Not being able to coordinate brushing your teeth, or wiping your bum.
Not being able to whistle or kiss.
Falling over, stumbling, legs giving out. Tripping for no reason. One foot dropping, the other not. Trying to walk with one foot dropped.
Anyways, you get the drift. These were just my symptoms, but I wanted to share the enceph specific symptoms I had.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I treated hard and aggressive and it saved my life.
It took about 7 or 8 months and then I turned the corner and started getting better.
Totally worth it. The trick with neurological is to find the most experience lyme literate doctor you can afford, and treat as aggressively as you can afford to.
Waiting only makes things worse. And with neuro lyme, things get worse real quick. Mostly it is central and peripheral nerve involvement, which can include your heart. There were a few times where my heart just stopped. Or it would do some weird beats and skip a beat, and I would pass out. Lots of neuros need pacemakers...you don't want to go there.
Are you in a lyme support group in your area? They have a lot of resources on doctors and facilities that are lyme friendly. And it is good to get a good support group for when you start treating.
Family and friends, unfortunately, are the first to go during the longhaul lyme treatment for many of us.
Hugs and support your way, I hope you can get help soon.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
June 2016. Do not wait this long. Get on list for cancellations with this doc and then start looking to get in sooner elsewhere.
If this progresses rapidly from now on, and we can't know whether it will or not, it may compromise your ability to get to the doctor. They don't make house calls and will not treat you over the phone.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
I called back the Lyme doctor and told them that I was only 2 1/2 hours away and could come right in if they had a cancellation. They called me back and can get me in next Tuesday!
Posts: 142 | From Midwest | Registered: Sep 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Wonderful, wonderful news!!! So, so happy for you. Good for you for doing that.
Posts: 9931 | From Maryland | Registered: Dec 2007
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quote:Originally posted by onebeed: I called back the Lyme doctor and told them that I was only 2 1/2 hours away and could come right in if they had a cancellation. They called me back and can get me in next Tuesday!
- Exactly! That is the way you do it! Good job!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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