posted
Can anyone give me more information on the neurological effects of lyme?
I have read alot about the congnitive symptoms, but would like to know more about the physical effects on your nervous system.
My main trouble lately has been the nerve pain. My doctor has prescribes Neurontin 300 mg twice a day. It worked well at first, now it seems like its not working as well or I am getting worse.
The first symptoms started a couple of years ago with cold tingly sensations in my legs. Currently, I am having the following...
-Migraines -Sharp shooting pains in side of head -cold tingling in arms in legs -hands go to sleep -palms of hands have mottled appearnce -shooting pains down arms into wrist, hands, and fingers -my fingers are discolored - purplish colored -the skin on my hands has suddely become very dry, and wrinkled -a dry, red rash that extends from my wrist to my elbow on my forearms -a couple of times, I have had an unbareable burning type pain in my upper back between my shoulder blades -my feet and toes feel like popsicles
Now the doctor's are saying they suspect MS and want me to have a MRI. I want to ask them if I should add that to my growing list of diagnosis's.
-------------------- melissa Posts: 24 | From crosby, tx | Registered: Jan 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Texangirl,
Your list of symptoms sure does sound familar and I know many here will agree and relate. As far as the MRI, I know that many LLMD's like to see that you have so many of these illnesses ruled out.
With that said, many have been told they had M.S. where as they saw improvement on antibiotics. Sooooo...my recommendation would be to post for a LLMD near you in the seeking a doctor section and get tested through IGENEX.
I know when I first came here, I couldn't believe all the red tape there was going along with this illness. I had no clue this could be going on in our country, so it really was an eye opener.
Too bad I didn't know about this place all the years of being misdiagnosed. Good luck to you and hopefully with a good LLMD you can get some of these symptoms reversed.
Oh yes, as far as neurological symptoms, I ended up unable to walk after steroid injections but my duck said it wasn't a stroke and my MRI was fine, soooooooo I'm lucky I was just waiting on results for my blood work with the LLMD or I would have been totally blown away and lost.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
There is a topic on the board right now that discusses MVP Syndrome/Dysautonomia , which is a autonomic nervous system disorder.
Much of what you posted about can be explained by this issue which we already know, many of us have, probably many, many more don't know they have it.
-Migraines -cold tingling in arms in legs -hands go to sleep -palms of hands have mottled appearnce -shooting pains down arms into wrist, hands, and fingers -my fingers are discolored - purplish colored -the skin on my hands has suddely become very dry, and wrinkled -a dry, red rash that extends from my wrist to my elbow on my forearms -a couple of times, I have had an unbareable burning type pain in my upper back between my shoulder blades -my feet and toes feel like popsicles
You could have practicly cut and pasted your symptoms from my original post on that topic.
Another thing that you would want to look into is hypercoagulation. The mottle pattern on your hands and the fact that they are popsicle cold, is likely a dead give away.
Posts: 1251 | From california | Registered: Apr 2005
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posted
WOW! and again WOW! Thanks for the info. I am definitely going to check into this further.
The other symptoms that you mentioned, I have almost all of but never thought they would be associated with the nervous system and the nerve symptoms I have been experiencing.
I have been diagnosed with Fibromyalgia because of extreme fatigue.
I have the heart papaltations, fast resting heart beat.
My blood pressure usually runs around 100/60 and my temperature is normal at 97.2
I take Nexium for the GERD and I stay constipated
I was in the emergency room right before Thanksgiving for chest pain, dizziness, and disoreintation.
I have frequent ringing in my ears.
I can't handle extreme temperatures in either direction. Hot or Cold.
Little activity has me gasping for air.
I break out in a sweat washing the dishes and often have to change PJ's in the middle of the night from night sweats.
Definate memory problems
Scoliosis - diagnosed with it about 5 years ago
Arm and leg aches on a daily basis
Backaches
Anxiety attacks
Nervousness and irritability
Depression
Diagnosed with Bipolar Disorder about 2 years ago (which is total BS)
I have also started having serious issues with incontinence and went to a urologist that ruled out any physical abnormalties that might be causing it.
I never thought that all of these symptoms might be related to anything else but Lyme disease. I thought the Lyme was what was causing these symptoms.
So question..
Does everyone that has Lyme Disease have MVP Syndrome/Dysautonomia also?
How is it treated and is it curable?
-------------------- melissa Posts: 24 | From crosby, tx | Registered: Jan 2007
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Glad you found it helpful! What I'm thinking about whether or not everyone with Lyme ends up with this, I don't know for sure. BUT my gut tells me that eventually they will to some degree.
When and how bad it hits depends on when the Lyme enters into your nervous system, what your collection of bugs is and what your genetics dictate. Even after it gets in it will vary as to how long it takes to really become profound. Lyme can move in and out of areas, so symptoms may wax and wane.
I can remember back 25 years ago, when I started feeling like I had a caffeine buzz to the point of vibrating, but I never drand a drop of caffeine. The vibrating feeling kind of stopped somewhere along the line and the constantly runing brain started, and then anxiety began creeping in.
But it seems that ALL of us exhibit these symptoms to some degree or another.
Posts: 1251 | From california | Registered: Apr 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
texangirl,
I have heard that Neurontin eventually loses effectiveness. Maybe you can talk to your doctor about increasing the dose?
As far as dysautonomia goes, it definitely seems a lot of Lymies develop some form of it. To varying degrees.
Treating the Lyme should help treat those symptoms. You also want your b vitamin levels tested, as a B deficiency can cause them as well.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Texasgirl, your symptoms sure sound like lyme to me. Most important to find an llmd and get checked out. In my opinion, that is more important then getting the MRI, though the llmd might want you to get one. Get proper treatment for lyme, and if that is the root cause, many of your symptoms should go away! Folks with lyme do get better with treatment, and although your list of symptoms sound like mine six months ago, after months of abx I am much better. Hoping the same for you...
Posts: 2557 | From home | Registered: Aug 2006
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you say your temp is "normal" at 97.2, but that's way below normal. have you had your thyroid levels checked? some of your other symptoms might also correlate with low thyroid, which can occur with our without lyme disease.
posted
Most people with Lyme disease also have coinfections. What that means is that ticks can give you more than one disease.
Your symptoms of gsping for air and night sweats are possible symptoms of Babesia -- that is a red blood cell parasite similar to malaria.
"I have had extensive bloodwork and apparently it has all come back normal" -- Pretty typical for Lyme patients in the early stages (first couple of years).
Different people have different neurological issues. Hubby has Parkinsonian tremors, myoclonus (muscle jerks) and seizure-like episodes. He has had very little nerve pain. His MRI shows 4 or 5 lesions, but docs say it is not MS as he has no other MS symptoms. With Lyme the lesions can go away in about 50 % of patients.
With all the symptoms you have, I would not waste any more money on docs unless they are LLMD's -- getting the diagnosis is only the first battle. Treatment could be expensive if you need IV meds.
Good luck.
Bea Seibert
P.S. If you have Lyme and coinfections that needs to be your first priority. MVP and dysautonomia would most likely be symptoms of the Lyme -- just treating those problems would not do you much good if they were being caused by an untreated infection. Dysautonomia in most cases falls into the category hubby calls collateral damage.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I would like to know what Thyroid tests were done?? You sound like you may be Hyper Thyroid? Did they do a TSI and TRAB test or just the usual TSH etc....
Posts: 408 | From NY | Registered: Jan 2006
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posted
I can't remember the name of the thyroid test
without pulling out my medical records, but I
know there is three different levels they can
check and he checked them all and all came back
normal.
-------------------- melissa Posts: 24 | From crosby, tx | Registered: Jan 2007
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Re: MVP
I remember reading a long article by Dr. K wherein he says that Lyme patients develop an MVP in the second year of the illness. That is exactly when my heart problems started.
I've not seen stats on the percentage of Lymies who get MVP, but I believe most FMS is due to Lyme, and FMS stats show 72-75% have an MVP. Many more could have one, but it could be missed if they are well hydrated when the test is done (see Jelly's post for more info on this).
Re: LOW BODY TEMP
In the same article, Dr. K also mentions that Lyme lowers body temperature since it does not like heat. I've seen this info elsewhere also. Even with thyroid supplementation, my temp is still too low. Without thyroid meds it was 96.5. With them it is 97.6.
I recently read that vitamin D deficiency, which is common, and proven in FMS, can lower temp, and that supplementation, or just getting 10-20 mins. of sun daily without suncreen, can help raise body temp.
This will not work if you live north of a line drawn at New York City....sun is not intense enough there except from May to Sept. You would need cod liver oil or another supplement up to 2,000 units daily. It also will not work if you are non-white.....you would need about an hour outside each day. If using supplements instead of sunlight, get your blood level of vitamin 25D checked every six months. Ideal is 50-100.
Re: THYROID
The Amer. College of Endocrinology finally changed the "normal range" for TSH a couple of years ago, but almost no labs and very few docs are up to speed on this.
Your TSH should be below 3.04. If you have any close relatives with thyroid disease or depression, your TSH should be below 2.0 (many cases of depression are really hypothryoidism). The ideal TSH for an adult female is 1.0.
For two decades I was told my thyroid was "normal" despite being cold all the time, having peeling dry skin, my hair falling out in clumps, fatigue, huge unexplained weight gain, etc. My TSH back then was 4.2, which is now considered to be far too high.
I looked on my latest lab work and the lab still says normal TSH goes all the way up to 5.5! Luckly, my PCP is up to date on the changes and gives me Armour Thyroid, which helps my energy a lot. Before tx, my TSH was 3.79 and now it is 1.35.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi Texangirl
Re: "questions about the neurological effects of lyme"-
here's a recent thread posted on the subject of cognitive/ neuro lyme:
You always have interesting things to share. You wrote, "Dr. K also mentions that Lyme lowers body temperature since it does not like heat."
When I get cold, I'm definately feeling like something is trying to take me out. And I did check for iodine deficiency and my patch test took less than 8 hours to vanish. Also, I've added the raw glandulars to help my thyroid. For a little while (couple weeks) that seemed to help, but now the temps are back down again (part of that is where I am in my cycle).
So it seems like if the Lyme is able to lower body temp it is through the hypothalmus or something like that... where is the body temp set anyway? Boy, I'm not sure how this works at all... Would that make it a neurological cause?
-------------------- When I lost my grip on Faith in the maze of illness, Hope gently clasped my hand and led on.
RuthRuth Posts: 478 | From California | Registered: Jan 2007
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