Aa
Diagnosed (today)
After suffering from more than one year, I now have a diagnosis or Lyme Disease. My question is my Neuro told me to come back after we found out what could be causing my problems. Should I go back and see him even though I have a diagnosis.
My earlier post:
I am a 25 year old female. For the last year I have been exhibiting many different symptoms that seem to have baffled my doctors. They all know something is wrong, but cannot pinpoint or rule out anything. 11 months ago, shortly after the symptoms started, my PCP performed this one exam, in which he stuck my entire body from head to toe. He used one of his wooden cotton swab broke in half. This of course left one side jagged and sharp and the other soft and cushiony. He noticed I was unable to differentiate between the two on my right side. He sent me to a Neurologist that turned out to have NO medical sense at all. His (PCP) main concern then was Multiple Sclerosis or Lupus. Well to make a long story short, a year later I am still no closer to a diagnosis. Three weeks ago my PCP repeated the exam done 11 months prior. This time just with one object. During this exam we both found out in certain areas now I am unable to feel anything. He has now done testing for Lyme Disease. Could Lyme Disease cause my loss of sensation, my inability to feel. Or could it be something a little more serious. He is now sending me to my third Neurologist, which is 4 hours away. What could be causing this? I have been to so many different physicians now and have had so many possible diagnoses, because all of my docs are baffled. I have been told Lupus, Rheumatoid Arthritis, Scleroderma, Ankylosing Spondylitis, Multiple Sclerosis and the list goes on. I already have these diagnoses: Kyphosis, B-12 Deficiency, Mild Early Disc Degenerative Disc Disease, Mild Spinal Stenosis, Scoliosis, Osteopenia, Fibromyalgia, Iron Deficiency, Myoclonus, Neuropathy, Mild Disc Desiccation. I am now questioning if I have all of these, some I know for a fact, others can be simply misdiagnosed.
I have problems with extreme tingling (even in head), burning pain (esp in chest area), weakness & fatigue (also in muscles), stiffness, Depression, Headaches, irritability, anxiousness, major muscle cramps and spasms, a decreased ability to feel pain & heal from it. I also suffer from malaise, frustration, difficulty with memory, concentration & thinking. I also have a lot of problem doing small muscle activities .
My PCP has prescribed Doxycline 100mg twice daily. Do you feel like I need to see the Neuro again, could have possibly caused some Neurological damage? I also have hyperreflexic nerves, an abnormal babinski reflex (right leg only), poor muscle control, and a gait.
My earlier post:
I am a 25 year old female. For the last year I have been exhibiting many different symptoms that seem to have baffled my doctors. They all know something is wrong, but cannot pinpoint or rule out anything. 11 months ago, shortly after the symptoms started, my PCP performed this one exam, in which he stuck my entire body from head to toe. He used one of his wooden cotton swab broke in half. This of course left one side jagged and sharp and the other soft and cushiony. He noticed I was unable to differentiate between the two on my right side. He sent me to a Neurologist that turned out to have NO medical sense at all. His (PCP) main concern then was Multiple Sclerosis or Lupus. Well to make a long story short, a year later I am still no closer to a diagnosis. Three weeks ago my PCP repeated the exam done 11 months prior. This time just with one object. During this exam we both found out in certain areas now I am unable to feel anything. He has now done testing for Lyme Disease. Could Lyme Disease cause my loss of sensation, my inability to feel. Or could it be something a little more serious. He is now sending me to my third Neurologist, which is 4 hours away. What could be causing this? I have been to so many different physicians now and have had so many possible diagnoses, because all of my docs are baffled. I have been told Lupus, Rheumatoid Arthritis, Scleroderma, Ankylosing Spondylitis, Multiple Sclerosis and the list goes on. I already have these diagnoses: Kyphosis, B-12 Deficiency, Mild Early Disc Degenerative Disc Disease, Mild Spinal Stenosis, Scoliosis, Osteopenia, Fibromyalgia, Iron Deficiency, Myoclonus, Neuropathy, Mild Disc Desiccation. I am now questioning if I have all of these, some I know for a fact, others can be simply misdiagnosed.
I have problems with extreme tingling (even in head), burning pain (esp in chest area), weakness & fatigue (also in muscles), stiffness, Depression, Headaches, irritability, anxiousness, major muscle cramps and spasms, a decreased ability to feel pain & heal from it. I also suffer from malaise, frustration, difficulty with memory, concentration & thinking. I also have a lot of problem doing small muscle activities .
My PCP has prescribed Doxycline 100mg twice daily. Do you feel like I need to see the Neuro again, could have possibly caused some Neurological damage? I also have hyperreflexic nerves, an abnormal babinski reflex (right leg only), poor muscle control, and a gait.
I don't know about the veins but your "fibromyalgia" diagnosis can be changed to lyme disease causing fibro symptoms. Get rid of the lyme and and get rid of the fibro.
Hi, I was needing to ask you all a question. For the last few months I have been experiencing this burning pain in my chest. At first I thought that my Fibromyalgia could actually be causing this. But with the new diagnosis of Lyme Disease, I am wondering if it is actually coming from this instead. My pulse has also been elevated for months now, despite the use of a beta blocker. I also have these ugly veins that have appeared over the last few months on my legs. My mom says they look like varicose veins to her. Do any of you have these problems as well?
Patsy,
Thanks for your feedback on not being depressed. I have passed along to my husband the interesting article about that Cats Claw herb for Lyme. :)
GG
Thanks for your feedback on not being depressed. I have passed along to my husband the interesting article about that Cats Claw herb for Lyme. :)
GG
This is the article I read.
Study Tests Promising Herbal Protocol for Chronic Lyme Patients
by Editor
ImmuneSupport.com
04-21-2007
Advertisement
A year-long clinical study in the Netherlands is testing the effectiveness of a specific herbal protocol in the management of Lyme disease, according to a recent report from the Asheville, North Carolina-based international Lyme Disease Research Database (LDRD).
The study, under the direction of pharmacist Philip Kielman, is testing three potent rainforest botanicals - samento, cumanda, and burbur - that have been used historically in South America for treating malaria and other diseases.
Begun in fall 2006 and slated for completion in fall 2007, the study is of high interest to doctors and Lyme patients seeking safe alternatives to the use of orthodox antibiotics for treatment of chronic Lyme, according to the LDRD.
The trial continues a very encouraging four-month placebo-controlled preliminary study of samento conducted in 2003 which reportedly produced a 65 percent reduction in symptoms in the patients treated, versus 20 percent in the patients receiving a placebo (fake dose), according to Kielman. “I think that's great,” he comments, given that pharmaceutical drugs are often approved based on a success rate of 30 percent.
Samento is a rare natural variant of Cats Claw found in the Peruvian Amazon basin that has been described as a broad spectrum antibacterial and antiprotozoal believed to be effective against the spirochete responsible for Lyme - Borrelia burgdorferi - and co-infections.
One physician now employing a samento protocol with patients, according to the LDRD report, is Dr. Andrew Wright, a leading Chronic Fatigue Syndrome and Lyme specialist practicing in Manchester, UK. Dr. Wright believes CFS is chiefly a chronic bacterial infection and that Borrelia can cause CFS. He has used samento in treating more than 500 patients and believes it “is safe and well-tolerated in most patients.” In particular, unlike conventional antibiotics used to treat Lyme, samento tends not to cause fungal/yeast overgrowth problems because it kills these organisms too.
For updates on this study and other research, and additional information about the use of herbal protocols in the management of Lyme disease, visit the Lyme Disease Research Database website ( http://www.lyme-disease-research-database.com ).
___
Study Tests Promising Herbal Protocol for Chronic Lyme Patients
by Editor
ImmuneSupport.com
04-21-2007
Advertisement
A year-long clinical study in the Netherlands is testing the effectiveness of a specific herbal protocol in the management of Lyme disease, according to a recent report from the Asheville, North Carolina-based international Lyme Disease Research Database (LDRD).
The study, under the direction of pharmacist Philip Kielman, is testing three potent rainforest botanicals - samento, cumanda, and burbur - that have been used historically in South America for treating malaria and other diseases.
Begun in fall 2006 and slated for completion in fall 2007, the study is of high interest to doctors and Lyme patients seeking safe alternatives to the use of orthodox antibiotics for treatment of chronic Lyme, according to the LDRD.
The trial continues a very encouraging four-month placebo-controlled preliminary study of samento conducted in 2003 which reportedly produced a 65 percent reduction in symptoms in the patients treated, versus 20 percent in the patients receiving a placebo (fake dose), according to Kielman. “I think that's great,” he comments, given that pharmaceutical drugs are often approved based on a success rate of 30 percent.
Samento is a rare natural variant of Cats Claw found in the Peruvian Amazon basin that has been described as a broad spectrum antibacterial and antiprotozoal believed to be effective against the spirochete responsible for Lyme - Borrelia burgdorferi - and co-infections.
One physician now employing a samento protocol with patients, according to the LDRD report, is Dr. Andrew Wright, a leading Chronic Fatigue Syndrome and Lyme specialist practicing in Manchester, UK. Dr. Wright believes CFS is chiefly a chronic bacterial infection and that Borrelia can cause CFS. He has used samento in treating more than 500 patients and believes it “is safe and well-tolerated in most patients.” In particular, unlike conventional antibiotics used to treat Lyme, samento tends not to cause fungal/yeast overgrowth problems because it kills these organisms too.
For updates on this study and other research, and additional information about the use of herbal protocols in the management of Lyme disease, visit the Lyme Disease Research Database website ( http://www.lyme-disease-research-database.com ).
___
I'm not at all depressed anymore. My body isn't normal but I live with what I have. I really feel from my own experiences that pain and uncertainty affect the entire person. Spine pain is a tough one. It's hard to treat and no matter what you do some pressure is placed on the spine with just about every body movement you can make.
Thanks Patsy.
My back was broke in a car wreck years ago, deformed the spine, it will always hurt. But since I've gotten older, it is worse, thus all my medications. It hurts the worst when I wake up in the mornings, becuz of the time lapse and strength of meds wears off. And that's also when I'm the most sad and confused. Once I take my meds, I am better all-around.
Great tip on Cat's claw. I will look into it for my husband, maybe it will help him. And if he will EVER go to the doctor again (a man thing), I'll make dang sure he gets tested for Lyme.
I also appreciated your mention that once your symptoms got better, you felt better, too, whether it was a cure that worked, or that the discomfort went away, you feel better about your world. I think there is a connection between pain and mental attitude, but how significant it is, I just don't know. I think about it a lot, tho.
GG
My back was broke in a car wreck years ago, deformed the spine, it will always hurt. But since I've gotten older, it is worse, thus all my medications. It hurts the worst when I wake up in the mornings, becuz of the time lapse and strength of meds wears off. And that's also when I'm the most sad and confused. Once I take my meds, I am better all-around.
Great tip on Cat's claw. I will look into it for my husband, maybe it will help him. And if he will EVER go to the doctor again (a man thing), I'll make dang sure he gets tested for Lyme.
I also appreciated your mention that once your symptoms got better, you felt better, too, whether it was a cure that worked, or that the discomfort went away, you feel better about your world. I think there is a connection between pain and mental attitude, but how significant it is, I just don't know. I think about it a lot, tho.
GG
thester, yes my heart rate is 110 or more when I am on my feet, 90'a when I am sitting. I am the athletic type and I exercise several times per week. My heart rate should be much lower as I have exercised for years. My BP is normal.
ggreg, I hope your husband doesn't have lyme. The only real treatment is antibiotics. There is an herb though called Cat's claw that is supposed to be very effective against lyme. If I can find the article I'll post it here for you to read.
I remember when I was at my worst and could hardly walk. I was so depressed and had no positive outlook for the future. I never took any meds. I think when people feel hopless and helpless they get very depressed. My whole outlook has changed since I have gotten better. I hope you start to feel better and regain your life back.
ggreg, I hope your husband doesn't have lyme. The only real treatment is antibiotics. There is an herb though called Cat's claw that is supposed to be very effective against lyme. If I can find the article I'll post it here for you to read.
I remember when I was at my worst and could hardly walk. I was so depressed and had no positive outlook for the future. I never took any meds. I think when people feel hopless and helpless they get very depressed. My whole outlook has changed since I have gotten better. I hope you start to feel better and regain your life back.
P.P.S.S. Sorry, I need to go take my medicine, my mind is all over the place. But here is a forum I found that discusses Neurontin, Lyrica, fibromyalgia, and Lyme disease:
http://www.revolutionhealth.com/forums/bones-joints-muscles/fibromyalgia/91394
http://www.revolutionhealth.com/forums/bones-joints-muscles/fibromyalgia/91394
P.S. Oh, and he also has headaches, like the migraines reported here, but we assumed when he injured his neck, it caused those, as well as the vertigo on account of the neck injury being close to the ear's balance mechanism, where dizziness can come from.
Thester and Patsy,
My husband had a bullseye rash on his leg about ten years ago, he showed it to me. It had a red center that was a couple inches in diameter, and then a clear skin area surrounding that about four inches in diameter, followed by the outer ring or redness about an inch in diameter. It was an amazing sight, which is why he showed it to me. He spent a lot of time in the woods fishing back then, picked up ticks now and then, and he said he had just pulled a tick off there when he showed it to me.
We called a hospital nurse line, and she said to watch for flu symptoms for the next month, and if he didn't have those, not to worry. So, we marked off on the calendar the interim of time to watch for flu, and he never had those symptoms, so we forgot about it. Well, slowly over the years, he became quite painful, dizziness, other stuff, but most interesting for this post is his symptom of being overly responsive to touching the skin, which you two have both reported as hyper-reflexia. For his vertigo he went to the VA for treatment, and I told him to ask a doctor there about Lyme, and get this, they say, "No, there are other signs he doesn't have." I asked him did he tell them about his bullseye rash, which he had completely forgotten, so they did not have that information when they said what they did.
If either of you guys find a medication that helps your symptoms, please let me know. I've posted about some medications that helped me with nerve pain, on Thester's other post about depression. I have to take a lot of mental medications and I hate them. I am thinking if I could just get rid of the pain, maybe my mental anxieties and fatigue from depression might go away. Recently I've begun a new medication, which I've discussed elsewhere, and my mind has been so uplifted by the drug, I've begun to think about the future and plans, which have been on the back burner for so long, the mental drugs not helping in the past very much at all.
Also, Patsy, I would like to know if there is any treatment that might work to "cure" the Lyme, even tho my husband may possibly have had it for ten years? Or maybe just finding the right nerve pain drug would help him? Thanks in advance.
GG
My husband had a bullseye rash on his leg about ten years ago, he showed it to me. It had a red center that was a couple inches in diameter, and then a clear skin area surrounding that about four inches in diameter, followed by the outer ring or redness about an inch in diameter. It was an amazing sight, which is why he showed it to me. He spent a lot of time in the woods fishing back then, picked up ticks now and then, and he said he had just pulled a tick off there when he showed it to me.
We called a hospital nurse line, and she said to watch for flu symptoms for the next month, and if he didn't have those, not to worry. So, we marked off on the calendar the interim of time to watch for flu, and he never had those symptoms, so we forgot about it. Well, slowly over the years, he became quite painful, dizziness, other stuff, but most interesting for this post is his symptom of being overly responsive to touching the skin, which you two have both reported as hyper-reflexia. For his vertigo he went to the VA for treatment, and I told him to ask a doctor there about Lyme, and get this, they say, "No, there are other signs he doesn't have." I asked him did he tell them about his bullseye rash, which he had completely forgotten, so they did not have that information when they said what they did.
If either of you guys find a medication that helps your symptoms, please let me know. I've posted about some medications that helped me with nerve pain, on Thester's other post about depression. I have to take a lot of mental medications and I hate them. I am thinking if I could just get rid of the pain, maybe my mental anxieties and fatigue from depression might go away. Recently I've begun a new medication, which I've discussed elsewhere, and my mind has been so uplifted by the drug, I've begun to think about the future and plans, which have been on the back burner for so long, the mental drugs not helping in the past very much at all.
Also, Patsy, I would like to know if there is any treatment that might work to "cure" the Lyme, even tho my husband may possibly have had it for ten years? Or maybe just finding the right nerve pain drug would help him? Thanks in advance.
GG
My BP and pulse rate has been elevated for the last few months too. Have you had that problem?
I have registered and posted on that site, thanks so much for the info. And I will be doing as much research as possible on this disease.
I don't have any actual loss of feeling this time around, but I have tingling feelings all over my body, even my scalp, burning sensations, twitching, and yes migraines. I had them before this though. My left side has a numb feeling from my head down the entire left side. It feels numb like pins and needles but I have feeling when I touch it. I also have very bad nerve and muscle pain in various areas. My eyes twitch every day, as well as most other places on my body. I also have the hyperreflexia but it has improved since antibiotics. It was very bad before. A slight touch of my leg and it would kick right out. I would try and learn as much as you can about this for your own sake. You sound like you have a good pcp but he or she probably doesn't know a lot about this disease and the treatment.
Honestly I really did not think that it was going to be Lyme Disease. I never saw a rash, but of course it is hard to check your entire body, especially when you do not have any symptoms. I felt good, my docs are thinking, esp my Rheumatologist, that the symptoms got worse in January and that they were already there but were dormant. I have the tingling (really bad at times in my head), burning (painful), difficulty swallowing, right sided weakness, numbness (some parts I have completely lost feeling of), brain fog, bouts of vomiting (not constant -- comes and goes), hyperreflexia and an abnormal babinski reflex. The first symptom I ever experienced was the numbness and tingling in my right leg.
Lyme can lie dormant for periods of time...months, years etc... and then all of a sudden hit like a mack truck. It usually takes several months for late stage to hit. My rash was in summer of 1992. My full-blown neuro, MS-like symptoms hit in January of 1993 so around 7 months for me. Everyone is different.
It wouldn't hurt to see the neuro. Actually, it may even educate the doctor that he or she missed a treatable neurological illness.
My story is a long one but I'll make it brief. 3 bullseye rashes next to each other in 1992. I spent all my time walking in the woods and fields with my dogs. I had no idea what it was but I had never seen a rash like this before and I'm a nurse. Here's a list of symptoms in no particular order. eye pain, blurred vision, brain fog, fevers, rashes, vomiting, diarrhea, elevated liver enzymes, twitching from head to toe, constant ear ringing for over a year continuously, hyperrefexia, left sided weakness, dragging of my left leg, cold, hot, burning, tingling feelings all over my body, brain fog, profound fatigue. I was terribly sick. I was pretty much blown off by the doctors here. I eventually heard about lyme and the rash was the same. I had spinal tap, brain MRI, EMG all normal. The neuro (Cleveland Clinic) told me I had a central nervous disorder but he had "no idea" what it was. He said it wasn't MS. I ended up taking antibitotics for about 4 months and started improving. I had to travel out of state to see a lyme specialist because "there's no such thing as lyme in Ohio" , according the doctors I saw. Anyway, I started improving. It took me about 5 years to recover to almost normal. I was good for about 7 years and it all hit again after a spine surgery. The symptoms are all neurological this time, numbness, tingling, twitching, pain, left sided weakness again etc...MS-like symptoms. Again, I have improved much since taking antibiotics again. I have never tested positive for lyme. Lyme is tough to diagnose as testing is unreliable.
Lyme enters the central nervous system within something like 12 hours. Less than half of people remember a rash or bite. The treatment is intense and prolonged. I suggest you go to lymenet dot org and post your story and current treatment. Click on "flash discussions" There is a lot of info. there and people will give you suggestions. The dose of medication you are on will just touch the tip of the iceberg.
My story is a long one but I'll make it brief. 3 bullseye rashes next to each other in 1992. I spent all my time walking in the woods and fields with my dogs. I had no idea what it was but I had never seen a rash like this before and I'm a nurse. Here's a list of symptoms in no particular order. eye pain, blurred vision, brain fog, fevers, rashes, vomiting, diarrhea, elevated liver enzymes, twitching from head to toe, constant ear ringing for over a year continuously, hyperrefexia, left sided weakness, dragging of my left leg, cold, hot, burning, tingling feelings all over my body, brain fog, profound fatigue. I was terribly sick. I was pretty much blown off by the doctors here. I eventually heard about lyme and the rash was the same. I had spinal tap, brain MRI, EMG all normal. The neuro (Cleveland Clinic) told me I had a central nervous disorder but he had "no idea" what it was. He said it wasn't MS. I ended up taking antibitotics for about 4 months and started improving. I had to travel out of state to see a lyme specialist because "there's no such thing as lyme in Ohio" , according the doctors I saw. Anyway, I started improving. It took me about 5 years to recover to almost normal. I was good for about 7 years and it all hit again after a spine surgery. The symptoms are all neurological this time, numbness, tingling, twitching, pain, left sided weakness again etc...MS-like symptoms. Again, I have improved much since taking antibiotics again. I have never tested positive for lyme. Lyme is tough to diagnose as testing is unreliable.
Lyme enters the central nervous system within something like 12 hours. Less than half of people remember a rash or bite. The treatment is intense and prolonged. I suggest you go to lymenet dot org and post your story and current treatment. Click on "flash discussions" There is a lot of info. there and people will give you suggestions. The dose of medication you are on will just touch the tip of the iceberg.
He said during my appointment Thursday even if it was Lyme Disease, this was right before the labwork, he still wanted me to see the Neuro. Should I or would it be a waste of time?
How long do you think it takes to go from exposure to late stage, how long did it take you to get a diagnosis? Did you have any Neurological signs/symptoms? I never really saw a rash, it started off with the numbness in my leg and it worked its way up to my arm. My right side seems to be most affected.
By the way, late stage lyme is a very serious and debilitating illness. I see you asked above if it was serious.
The neurologist probably can't help you with this.
The neurologist probably can't help you with this.
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