I will be returning to see a neurologist in New York City in early February. This will be my second visit with him. He is aware that I have lyme disease. He can find no other reason for my nerve pain (I have burning, sparking, crawling nerves all over my body. I also used to feel off balanced and it was hard to type, and I felt like I was going to drop things, but these have all improved with antibiotic therapy).
He is a very well known neurologist that publishes articles in medical journals and gives seminars to other doctors.
On my first visit, I asked him to consider educating the other neurologists about lyme disease. I will restate this (strongly, but politely) at my next appt with him.
He knows that I saw 4 neurologists before him. Three of them did not consider lyme disease as a possibility in me. The 4th (when I mentioned it to him--for I realized it was a possibility in me by that time)just scoffed at the idea.
I am hoping that you all can help me. I would like you to write out your story briefly if you have neurological symptoms. If you've seen any neurologists along the way, include what happened. Write if you've improved with treatment.
I want to print out your stories and present them to him at my next appt so that he can see that others with lyme disease have neurological issues and had a hard time getting the help they needed.
PLEASE be polite in your stories. Respect goes a long way in getting someone to hear us and help us.
THANKS SO MUCH IN ADVANCE!
Timaca
Posted by cantgiveupyet (Member # 8165) on :
Hello,
I went to see a neurologist in Sept. He ran a gamut of tests...MRI of cervical spine, MRA of head.western blot.....my symptoms at the time were, dizziness, sensitivity to light,pain around my eyes, feeling spacey, feeling like someone was pulling the back of my head, dizziness worse while driving. He thought it was migraines, so he put me on vitamin supliments. The MRI of cervical spine showed a large herniated disc, so he refered me to a neurosurgeon.
Nuerosurgeon #1 said that I needed surgery but could not guarantee it would cure my problems because he was not sure they were related to the neck. he noted to my chart I had hyperflexia...more in my left leg
Neurosurgeon #2 said that i did not need surgery, it was not causing my symptoms.
Neurosurgeon #3- said no surgery needed, my systemic condition could be due to hormonal imbalance and referred me to an endocrinologist, who didnt find anything. I saw this NS a 2nd time in October at this time i was having frequency in urination and he assured me it was not related to my neck, he thought possibly systemic lupus. You do not have migraines!
I have not had a complete month of antibiotics due to my very bad herx reactions.
I just wish the neurologist that I saw could have known more about lyme and put me on antibiotics before this progressed to my bladder and other nuerological involvement. The nuerologist even seemed suprised the western blot came back neg, yet wouldnt go against the test results!
I now have right side numbness....bladder problems, eye twitch, sleep disturbance...trouble driving and walking...trouble swallowing. Burning in my feet and legs. to think at one time sensitivity to light was it.
LLMD said I have a lot of neuro involvement, i asked him why and he said that is where it is with you.
Good luck with your appointment.
Posted by Andie333 (Member # 7370) on :
I also have singificant neurological involvement. I had a bullseye rash in 1996 but wasn't diagnosed until June 2005. After testing positive, I began Lyme treatment that month.
My first troubling symptom (two years ago) was numbness in my right foot (almost constant) and periodic numbness in my right arm. In all, I saw 12 doctors, most of whom knew exactly what was wrong with me...and none of whom tested me for Lyme.
I did see a neurologist. He did a brain MRI which he said was "normal." All office reflex tests were also normal. He concluded that I was fine and made no attempt to explain the numbness.
Since June (under guidance of LLMD) I have taken Ceftin for my Lyme, plus supplements.
I've actually seen an increase in my neurological symptoms. They seem to come and go, depending on stress to some some extent. In the first two months, I had a lot of dizziness and disorientation.
I had two incidents of full-body paralysis, one of which landed me in the ER. These happened consistent with my first and second herxes. I could speak and think fairly clearly but I couldn't seem to move any part of my body. In all, that ordeal lasted about 4.5 hours each time it happened. I have heightened sensory sensitivity, especially olfactory and, less often, auditory. I also experienced auditory distortion last month.
I have virtually no short-term memory, and I often "lose" my words when either speaking or writing. Also, my natural tendency toward dyslexia has been magnified. Like you, I too have creepy-crawly sensations, always at night at at the same location (near scalp line on left side).
Although the numbness in my foot has improved a bit and I no longer have numbness in my arm, I have new symptoms that have just started in my 6th and 7th months of treatment: I feel as if I have a thick, tight band wrapped too tightly around both my ankles and my wrists. My lips go numb frequently. I have had some spasms.
I realize that the physical sense of disorientation is something I no longer have.
See pm for additional info.
I hope your neurologist gets enough information to at least be able to study this further.
Thanks.
Andie
[ 21. January 2006, 11:30 PM: Message edited by: Andie333 ]
Posted by JillF (Member # 5553) on :
I went to the same neuro twice
He told me it was a virus and anxiety
He didn't take me seriously at all. The second visit he said he was going to do the needle test just to get it over with (I assume he meant so I wouldn't continue to bug him)
Talk about lack of bedside manner
Posted by Cinder Binder (Member # 8225) on :
I saw a neurologist 3 times in Sept. 2005. I was referred to him by my PCP because she couldn't find anything wrong with me.
I had a stiff neck, headache, dizziness, sensitivity to light, muscle spasms, feelings of shakiness, and a constant buzzing/vibrating sensation on the left side of my body. I also had facial numbness at one time.
I had a MRI of my brain, neck, and thoracic spine. All were normal. I had the nerve impulse, vision, and ear tests to rule out MS. All were normal. I passed all of the neurologists initial reflex exams.
He was stumped because I had a lot of symptoms. However, once he found out that I had separated from my husband two months prior, he said that my problems were due to stress and depression. He gave me Zoloft and told me not to take on too much stuff - to take it easy. Also, he wanted me to cut my long hair because he thought that was why I had a stiff neck and a headache.
I asked him what about Lyme disease? He laughed at me and said that my blood test was negative, I didn't have the rash, I didn't have joint pain, and the neurological symptoms come much later in the chronic stage of Lyme Disease, so I couldn't have it. No, you're just stressed out.
I went back to my PCP and told her that I still suspected Lyme and to please do a Western Blot test and put me on antibiotics. She did. She put me on Doxy 100mg 2x day for 3 weeks. That didn't do anything for me except make me nauseous. Right after the 3 weeks of taking Doxy, I developed a strep throat and my other PCP prescribed Amoxicillin (875mg 2x day for 10 days). While on the Amoxicillin, the buzzing/vibrating sensations diminished and basically went away.
I am off abx now, and my first appointment with the LLMD isn't until February 14th. I've noticed that the buzzing is coming back. So, I want the LLMD to put me on Amoxicillin for longer.
I haven't been back to the neurologist. After my appointment with the LLMD and I get my blood work done at Igenex and find out the status and if it is definitely Lyme or a co-infection, I will go back to the neurologist just to tell him that it was Lyme Disease and he should take patients more seriously when they tell him that something is wrong. I doubt he will listen to me anyway. But, it will make me feel good to let him know that he was wrong.
Good luck to you in your endeavor.
Cinder Posted by hiker53 (Member # 6046) on :
I saw a neurologist at Mayo clinic for my imbalance and numb arm and leg after the ENT referred me. He could find nothing wrong. I did request a Lyme test, but only one band showed positive, so he said it was not Lyme.
Then I started just falling down, but not going unconscious. I ended up in the local hospital where the neurologist on call did a MRI of the head, neck, and spine. She did an EEG (normal) and a carotid artery ultrasound. Even did some heart tilt table testing. Finally decided I was having mild seizures and put me on Keppra.
The seizures continued, so I saw another local neurologist who did muscle testing (can't remember the name of the test, but they shock the muscles and stick needles in you.) It came back normal. I suggested I had Lyme, so he did a lumbar puncture and it came back normal. Switched the meds to depakote. Didn't help.
I was referred to a neurologist at Northwestern in Chicago where they did a 3 day video EEG with me off all meds. The EEG was normal, although I had 60 seizures during the 3 days. I suggested Lyme. He suggested subcortical myoclonus of unkown origin and put me back on Keppra.
I went back to Mayo clinic where I saw 2 nuerologists. Did a MRI of the brain and found a small lesion in the right temperol lobe. Did a sleep deprived EEG which was slightly abnormal, but since I was on seizure meds, the neurologist said it was okay. He ended up saying that some neurological diseases have no answers. I suggested Lyme and he said I didn't have the symptoms.
Finally got tested at Bowen and Igenex with positive test results and saw a LLMD and did 8 months of various antibiotics (5 of those I.V.). No improvement. My local neurologist believes I have post Lyme syndrome and refuses to believe that the Lyme bacteria are still alive. I still take Keppra and have added Klonopin for the seizures, but loud noises and crowds bother me.
I now do the salt/C regimen and will go back to rifing when I take a leave of absence from work. I believe that rifing and diflucan are the only things that have helped so far. I haven't done salt/C long enough to tell.
If you have other questions, PM me. Hiker
Posted by copperhalo (Member # 8494) on :
i went to neuroduck on the possiblity of needing a spine tap, to see if the big bad bug had gotten into spinal fluid. He did his little test to seeif my toes curled. They didnt, and i got the all clear. that was 4 months ago. Last week, on my way to my brothers house( an hour away) i almost passed out at thewheel. Adrenaline got me home....point being that neuro's look for things like severe nerve damage etc. If you havent suddenly started to stutter, or have some kind of paralysis, they cant help. What we have is in our blood.......Plain and simple.
Posted by cigi (Member # 6600) on :
I went to a neurologist with the results of my spect scan last January. At that time I was on 2 mos of iv treatment plus over a year of orals. My spect scan said moderate global hyperperfusion with heterogenity. In other words, slowness of circulation in the brain due to encephilitis, vasculitis, lyme disease or medications, which told me something was wrong, but which one. I have positives in the igg and igm and neurological symptoms (depersonalization, floaters, feeling like your brain is on fire) as well as irregular heartbeat (had v-tac two times), heart fluttering, pain in joints, ear pain...Doing another spect soon to see where I stand as far as treatment goes. That was the recommendation by the neurologist. See what has happened after a year of iv treatment. Still have symptoms, but had had some reprieve for about a month and a half, which I'm grateful, which I've been lucky to have in comparison to others here.
Hope all works out. Good luck. Cigi
Posted by Michelle M (Member # 7200) on :
Hi, Timaca!
A couple years ago I developed really bad headaches. So bad they were ruining my life. Along with other odd symptoms - extreme jumpiness, anxiety, noise sensitivity, fatigue, brain fog, memory problems, pain in my arms. I went to my doctor. She sent me for a brain MRI, which came back showing 11 frontal lobe lesions suggestive of lyme disease. It was then I recalled the tiny tick I had pulled off and the subsequent small red ring I had ignored, thinking there was no such thing in California.
I went to see the top neurologist here in town and read up on Lyme disease. To my surprise, he really didn't want to hear much about it, and decided I just had migraines. He said, "We just need to find your triggers."
He explained away my rash by claiming it was probably just an allergic reaction to the bite.
I asked for a western blot but he refused, instead telling me I could only have one if my ELISA was positive. Since it had been several years since I was bitten, I knew my ELISA was likely to be negative. I told him this, and he scoffed at me. Sure enough, my ELISA came back negative.
He insisted on a spinal tap, to which I submitted, it came back slightly abnormal with elevated proteins.
He insisted on evoked potentials testing, which came back abnormal (SSEP's), with "absent cortical responses" in my arms, which are painful.
By this time, my neurologist had decided I had probable MS. The only treatment he offered was a "wait and see" approach, and Topomax for the headaches.
I am still paying off all these tests when what I REALLY wanted was a $200 IGeneX western blot. When I later had one, I had six positive bands, some double and triple positive, and five equivocal bands, on IgM, and was CDC positive for Lyme.
When I faxed my western blot results to him and saw him at a follow up, he was extremely hostile, angrily writing down my LLMD's name and claiming he was "overtreating" me (I'd only been on antibiotics two months at that time!). I was kind of stunned, since if I'd remained in his care, I wouldn't have even been diagnosed - a minor fact he failed to acknowledge.
I said, "How can you claim I am being 'overtreated' when as recently as last week I'm driving around and can't even figure out how to get to my own house?"
He said, "You are having seizures."
I respectfully declined to keep any follow up appointments.
I feel he is why there are so few cases of Lyme in my area. If a raging case of obvious Lyme walks in the door like me who KNOWS she has it, recalls a bite and rash, has all the objective signs and symptoms plus the brain lesions, what's he gonna do with a subtle presentation or a person who doesn't know what's wrong with 'em, fer cryin' out loud?
It is one thing to not be open-minded. It is another thing to actually fight against learning the truth about Lyme, while the bacteria in your patient's brain continue to flourish.
Michelle
Posted by Nebula2005 (Member # 8244) on :
I am waiting for the test results from MD Labs tick-borne panel.
We live in the woods, we've had ticks hatch in our house. But the only time I remember an actual tick bite was from 1989 when we still lived in Colorado--and what I really remember was the weird rash I had that kept coming back for months, on my lower back just above my hip, where I couldn't even see it. It was rough, crescent-shaped and pink. I thought it was hormonal as it seemed to correllate with my cycle.
Over the years I've had many symptoms--bad headaches, a recurrent stiff leg and swollen knee, exhaustion, constant flu-like feeling, thyroid problems, and so on. I was being treated for severe allergies with shots this past spring and summer, until my blood pressure and heart rate went through the roof. Then I realized that all the tingling and numbness in various places was getting worse (especially in my face)and above all the crazy bad ringing and pain in my ears wasn't from histamine.
My brain and neck MRIs in December were normal. While I was laying on my back having my neck scanned, both of my arms were numb all the way to the tips of my fingers. The day after the MRIs, I had terrible bladder pains, bad enough to warrant a week of Septra. And for 2 weeks I could hardly think straight.
My doctor didn't ask for a neuro consult. But he is still trying to find out what's wrong with me.
Good luck and good thoughts.
Lynne
Posted by MizMo (Member # 8389) on :
Symptoms with neuropathy started almost 3 years ago in 2002, but I did not realized at first what they were. Pain in the tops of my right foot, as if it were swollen, was the first symptom. I had come down with a kidney infection and at the time, thought it was related.
As months progressed, it began to spred to the other foot and I notice stiffness in the right ankle. I asked the urologist about it at that point and he thought it might be heart related. The heart specialist ran me through the complete gambit and found nothing. He said the next step is the neurologist. By this time, my hands were experiancing the pain and I was having periodic burning sensations in all four extremities.
Saw the neurologist in June and started treatment. By July, it was still progressing. Now I had a layer of glovelike numbness from back of toes to mid shin and from back of hand up to almost the elbow. Bottoms of feet and hands were fine. Testing showed loss of sensation in the tops of my feet during first visit. We ran some blood tests but those found nothing (including lyme because I asked for it). MRI's showed nothing pinching etc in neck or spine. In September, left half of my face including part of the lips also had that numb feeling. He put me through the test with the shocks to rule out certain kind of nerve damage (MS?). Diagnosis: peripheral neuropathy with unknown cause.
I experiance dizzy spells, poor balance, loss of coordination. Also loss of words while speaking or tendency to flip words around in the sentence so that it comes out scrambled. Very frightening. I have to rely on yahoo calendar to remember everything from appts to phone calls because if it's not noted, I forget it.
I saw the lyme doctor for the first time in October. Lyme confirmed based on urological, neurological and medical history combined with the IGenex and cross tests. Hallelujah!!!
Since starting antibiotic treatment with Ketek have shown marked improvement in neurological symptoms - notably the pain is decreased, the numb feeling will actually disappear for stretches at a time. I'm walking a bit easier most days as well, but I'm not sure if that is just the effect of the Cymbalta that the neurologist put me on for the neuropathy, or if the symptom is clearing. Once I'm feeling better overall, I'll ease off the Cymbalta and see what happens.
Posted by timaca (Member # 6911) on :
This is AWESOME!! Thanks, all for your replies. I am printing them out, keeping you all completely anonymous.
I see the neurologist Feb. 6th. Keep your fingers crossed. He teaches at a medical college in addition to writing journal articles and giving seminars.
I'll welcome other replies until early February...and I'll post back what happens when I return from my trip.
Timaca
Posted by Nal (Member # 6801) on :
I started having nerve symptoms in 1999. It started with tingling in my arms and legs. It then progressed to skin burning pain (I felt like I was on fire all the time), muscle cramps, joint pain, stiff neck, etc. I also had eye symptoms, tremors and severe brain fog and dizziness and bad gastritis.
I was sent to a neuro at the Portsmouth Naval Hospital. He was no help. He wouldn't even take me seriously. He tried to tell me I probably had Somatoform disorder. I was incredibly upset and so discouraged!
A couple months later I was sent to another neuro. He just said "benign parasthesias". At least he was very nice and tried to help me out but couldn't come up with anything.
In 2002 my symptoms went into remission. Then in 2004-just a couple months after having my 3rd baby, my symptoms started up again!
Once again, I saw a neuro in NM. He had absolutely nothing to offer. Neither did the one that I saw up at the University of CO although she was at least trying.
I have tried many antibiotics and have failed at all of them. We are getting ready to try IV meds next. Its so very discouraging and scary. Im only 33 and dont want to spend the rest of my life feeling so incredibly miserable!
Nancy
Posted by cutie (Member # 8468) on :
I just read all these posts and started to cry. I feel like what I've been going through for the past 10 years has not been understood by anyone and this post sounds just like ME!
I actually am going to the FFC in Atlanta and had my 3rd appt today, and had blood drawn for the Igenex Western Blot Lyme test.
My symptoms started about 10 years ago with fatigue and twitching of muscles, along with small myoclonic jerks. Saw an internist who suspected MS. Was referred to a neuro. Had a normal neuro test and a clear MRI. Was told I had "Chronic Fatigue Syndrome".
Symptoms only got worse. Migraines, pressure feeling in head, muscle twitching all over body, tingling of face, legs, arm, and scalp. Can't sleep at nite because of all the creepy crawly feelings. Oversensitivity to light, oversensitive to noises, tremors and shaking. Burning sensations all over body.
Then for about 3 years I seemed to feel better. Then it came back even worse plus new scary symptoms - the worst of them being the numbness. Left arm, left leg, left side of face. Saw another neuro. Did neuro test in office, EMG, MRI and MRA. All normal. Said it was "anxiety". Well of course I was anxious, half my body is numb. I was referred to a psychiatrist.
In addition to the numbness I have dizziness, difficulty walking, memory loss, difficulty with driving because I forget where I'm going.
I'm only 31.
Posted by msariess (Member # 7713) on :
I have also seen a neurologist, MRI of spine showed a few damaged (arthritis) areas (not requiring surgery)and the EMG (nerve testing) did show damage to rt leg & arm that might be related to the spine.
MRI of brain was normal. Bowel & bladder dysfunction are not related to spine damage (but they don't know what is causing it) Neuro cognitive testing showed some "problem areas", but still not lyme disease because NO FOCAL LESION indications....
I am so disgusted with doctors these days!!! What a bunch of sheep-like, namby-pamby, BROWN NOSE dummies!!! I have no respect for them any more, I'm ready to go herbal on my own....
Posted by concerned mother (Member # 8128) on :
We spent three very long months at neurologists. It seemed as if my son had them all stumpped! He had headaches and neck pain and eye twitching. They even talked about injecting him with botox in the muscle in the neck to help with the pain. We also had steriod injections in the optic nerve to help us . Now that we know it is lyme we really were dumb with the steriod thing. We have been back since the lyme diagnosis and he said "You know those lyme test are not always accurate and said we should see an infectious disease doctor" Needless to say we will not be going back to see him! When will these doctors take this seriously!
Good Luck
Amy Posted by minoucat (Member # 5175) on :
The hubby's seen 3, done MRI (normal) and spinal tap (normal -- didn't look for cyst form). All with the same outcome: There's nothing wrong with you, if you had a brain infection it would show up, go see a psychiatrist.
Sx included seizures, myoclonic jerks, numbness, major cognitive dysfunction including memory loss and aphasia, labile moods, disrupted gait, exhaustion, sensitivity to heat and cold, insomnia, neuralgia, and lots more.
Despite his extremely positive western blots (positive even by CDC standards), history of tick bite in an endemic area, classic sx, etc. etc. 2 of the neurologists were very critical of the LLMD who dx the hubby, and were not interested in any of the research papers (Fallon, and so on) I tried to introduce them to. The hubby has improved radically with treatment for Bb and Co, and yes, the neuros will receive a summary of his improvement under skilled and knowledgeable care.
This pretty much illustrates our experience with neuros and other such:
From DB's Medrants page
Posted by MizMo (Member # 8389) on :
Hang in there, cutie! You are not alone in getting such a diagnosis. I swear, I think Chronic Fatigue is just an "I don't know" label for when they can't find the cause of the symptoms.
The numbness is frightening - I know that's when I started to lose it myself. I'm 38.
I'll wager the IGenex tests will show positive bands. Wishing you luck either way.
Mo
Posted by cutie (Member # 8468) on :
Mo - Thank you. I'm so scared. I don't want Lyme but I'm not crazy. I'm so frustrated with doctors.
Posted by trails (Member # 1620) on :
I need to get my story to you Timaca!
I hope I can get some time to do this soon!
And I hope you are feeling better. I was re-diagnosed and treated with IV antibiotics by a NOT LLMD Nuerologist in New Mexico and IV therapy was continued b/c of an ID Doc (also not LL). My case is not usual b/c of this. I found these doctors to be open to understanding the possible difficulties in treating such a complex disease. Unfortunately they some how have returned to their "old ways" and were very rude and indignant to me when I relapsed several years later.
As if I didnt already feel awful enough.
Will try ot write a full version soon for you to take! Trails Posted by timaca (Member # 6911) on :
cutie~ Hang in there, and post back when you get your Igenex results. I bet it's lyme and you will get better with treatment.
Trails~ As always, I love your stories, and I'll NEVER forget how we met up (and I bet Dr. R--bless his heart--won't forget us either! ) I can't wait to hear back from you. I am slowly, but surely, breaking off my relationship with "john" and am taking the Theralac daily. My LLMD and Wildcondor both recommended Florastor as well, for GI issues...so that is on order too. My, oh my, I've never spent so much time discussing such things!
I have a LLMD who is willing to "coach" the neurologist in NY should he be willing to teach other neurologists. And, it appears that ILADS is also willing to help him along.
SO...I am eager to share your stories with him. I have a half hour appt with him, and much of that time will be trying to see if he will be willing to "go to bat" for us lyme patients who have had one heck of a time getting diagnosed...especially by neurologists!
Timaca
Posted by NP40 (Member # 6711) on :
My son was actually diagnosed originally by a neurologist. He had the leg pain, tingling, etc. The neuro did an MRI and stated the lesions in the white focal matter looked exactly like lyme disease ! How did he know ? His own son had lyme and his son's MRI was indentical to my son's.
Interesting, no ?
Posted by Bill ATL (Member # 7817) on :
Timaca... I believe you were one of the 1st people I ever spoke to about Lyme...on the BrainTalk Forum...before I even knew about LymeNet! You have helped me more than you know, and I will forever be grateful!
In the pack of doctors that I saw, previous to my CDC Positive IGeneX test, I saw 2 Neurologists.
I had an infection on my left elbow area that became very swollen, red, and had it's own fever. My primary doc diagnosed it as a bug/spider bite of some sort. I was put on 10 days of Levaquin. By the end of the 10 days, the swelling had reduced, but had not gone a away, so I was put on another 10 days worth.
About one month later, flu/fever symptoms hit me like a freight-train. That lasted a week or so before getting over it.
Ever since then, almost all of my issues were happening on the left side of my body....the same side as the bite. Left arm ulnar nerve tingling from my armpit down to my pinkey finger. Muscle pain in my left calf.
The two symptoms, that YOU mentioned, that were the "nail in the coffin" that it was Lyme was Testicular pain (tested for all STDs previous to this) and "HEEL PAIN" (left plantar tendon)! The heel pain was the one that did it...I became my own advocate at that point.
I had now clue why, or reason for, that Heel to be hurting the way it did. It came and went, I don't run, I don't work on my feet...I wore good loafers and sneakers...it was wierd...along with the rest of the symptoms.
OK Sorry about all that...the Neuros...I went to the first one, explained my issues. Most bothersome, along with the other symptoms, was the spinal pain in the thoracic region of my back.
He gave me photo copies of some stretching exercises for my back/spine, prescribed a muscle relaxer, and sent me on my way. I gave them both a shot...to no relief! I didn't feel like I'd get anywhere with him regarding my issues, so I asked a Dr. friend of mine who he recommended as a neuro...and set up an appt with him.
(At this time I did have a Positive elisa to point to from my Primary doc. Negative on all bands of the WB.)
MUCH better guy! Was open to the idea of it being Lyme. Thought we needed to do an MRI first of all. Due to the continuing thoracic pain, I asked that we do it on that region. We did, it was negative. He mentioned the spinal tap option for further testing, and that they did test for Lyme with this. He left it up to me, and I decided I did want to do it. (Little did I know the low % of it ever being detected in the CSF).
I am still happy with that decision though, because they test for lots of other stuff, and I was in a "rule out all possibilities" stage. Needless to say...it was negative.
In between the MRI and Spinal tap, I had gone to an infectious disease Dr., had the Lyme tests done for a 2nd time, and the Elisa and 1 of the CDC bands (23-25) on the WB came back positive.
This second Neuro was very concerned with my situation. By that time I had learned about the LLMDs and had an appt with one about 2 months out. He actually prescribed a couple of regimens of Doxy to tide me over until I could get to the appt.
He did mentioned that he didn't think he would be the best to treat me, as it wasn't an area he was familiar with. At that point I understood the politics of Lyme, and didn't expect him to treat me. I didn't blame or fault him. He actually listened to me and genuinely cared about my situation. He was the best that had seen thus far. I think he may have been one that would have treated for it, if there were more Neuros out there that he could reference or learn from.
At the LLMD: IGeneX tests...CDC Positive. Quest WB came back positive as well.
I hope this helps...sorry its so long!
Bill
Posted by duramater (Member # 6480) on :
I've been quite fortunate with my neurologists it seems. After a tick bite, rash, flu-like symptoms and a negative test in fall 1989, in spring of 1990, I had horrific symptoms that sent me to the ER. I was seen by a neurologist in the ER who elicited the above history. He said even though the test was negative, it sure as heck sounded like Lyme disease to him. I also had a bilateral positive Babinski (toes go the "wrong" way) reflex which showed irritation in the brain, and I had positive meningitis symptoms. He did a spinal tap along with many other tests, and it was positive for Bb. So the neurologist diagnosed me (and it was a positive spinal tap too!).
Several years later, in what was a recurrence, I was seen by the neurologist PC at SUNY-Stonybrook. She too found lots of objective neurological problems and recommended another course of IV abx. I did test positive on their blood test at that time.
Most recently, last year, after nearly 8 years of relatively good health, I suddenly had gobs of neurological symptoms. In the hospital, all signs and tests were pointing to myasthenia gravis. While in the hospital, I developed some heart symptoms as well. The neurologist said no way would someone have both MG and something else (since MG doesn't cause cardiac problems) at the same time. Plus, he noted, I had a history of LD, and that we should check that out further. A few months later, I was tested, and my western blot was CDC positive.
So, there are some good neurologists out there. Sounds like they are just awfully tricky to find!
Posted by timaca (Member # 6911) on :
NP 40~ That is very cool! I am so glad that it was recognized so quickly for your son's sake!
Bill ATL~ Glad I could be of help to you! I remember that you are one of the people who also "vibrate." I have been off antibiotics for several weeks now, due to a fungal infection in the picc line, and then C-diff....and my vibrations have returned. I used to just vibrate once for about 30-60 seconds in the chest as I was about to fall asleep; but that had subsided with treatment. This time, I was vibrating LOTS...very weird...but such is lyme. Thanks for your story. Are you vibrating less now? (Oh the questions we ask one another! )
Duramater~ I'm a bit jealous of your luck with neurologists AND your positive spinal tap! I guess your propensity for getting C-diff counters your good luck in the other area though. Wow...your story makes one wonder if one can ever get rid of lyme. Do you feel like that is a possibility? Do you also have co-infections?
Thanks all for your stories. I am excited to present this to the neurologist in NY.
I did stop by the lab today to see what had happened to the results of the anti-dsDNA antibody test that he had ordered. I noticed that he didn't mention it in his report on me. The lab (as it turns out) failed to run that test on me. So, I have to go back tomorrow, since it should be a fasting test. I am truly amazed at what the lab has missed on me! Posted by Bill ATL (Member # 7817) on :
YES INDEED!
As a matter of fact I just got back from my primary duck because of the horrible night I had last night with the vibrations...mine subsided early on, but over the last cpl months they have been steady/regular.
But last night I had the worst session yet. The skin on my face seemed to be bubbling and ready to jump off my head. I am really scared this time, and am unsure what to do next. I never did have an MRI of the Brain done, so went to the primary today to get one approved/scheduled.
I'm not expecting much, but we'll see. I need to do it for peace of mind more than anything. My LLMD called me in some Ambien...I wish I knew of a simple solution!
Any Ideas?
Posted by jaykay (Member # 8448) on :
I know of a guy here in New York City. He was golfing in a park in Brooklyn, got bit, with bulls-eye. Being a certain type of guy, I guess, he didn't do anything about it. 2 years later, he has Lou Gehrig's symptoms--falling down, slurring, etc. 4 top NYC neurologists said it was absolutely not lyme because you can't get lyme in New York Ctiy. They sent him home. Luckily, he found info on Lyme and started treatment with LLMD. He had some improvements and then not so good/up and down. Not sure how he is doing now.
(His wife had some minor jaw symptoms, LLMD thought she had Lyme too. But she wouldn't get treatment--not sure if it's passing back and forth...)
Posted by trails (Member # 1620) on :
Am sending you my story (which also includes a positive testing for Lyme antibodies spinal tap). I hope that does NOT sway this neuro into thinking that is the ONLY way to diagnose. The neuro that treated me then wouldnt even consider it until the spinal fluid was tested.
Trails
[ 24. January 2006, 02:02 PM: Message edited by: trails ]
Posted by nhhawkeye (Member # 6626) on :
I have clinical lyme of 4+ years duration misdiagnosed as ALS. I haven't found a good LLMD in my area (NH) but I'm still looking. Mark
Posted by timaca (Member # 6911) on :
Bill ATL~ Sorry, I sure don't know of what to do for the vibrations...I think the brain MRI is good for your peace of mind. Mine was normal...Keep us posted on the results of yours.
jaykay~ Amazing story about the guy with the bullseye rash, and 4 neuros in NYC said it couldn't be lyme, for lyme isn't in NYC. I'll certainly share your story!
Trails~ Got your story. Thanks! I definitly want to make the point to this neurologist to please teach others that lyme can be ABSENT from the CSF, and one can still have neurological issues arising from lyme.
I had one neuro tell me that "if lyme isn't found in your CSF, then lyme isn't causing your neurological issues." WRONG! And I was well pleased to send him my report from Columbia Univ. Medical Center, along with a page from Columbia's website which states that people can have lyme disease with neurological issues, and have negative CSF for lyme.
YES!! I am going to make sure that this neurologist will share this info with others (and hopefully, he will!!!!)
Mark~ Good luck finding an LLMD. If you have to, you can travel to NY. There are several there....That's where I go, and you're a heck of a lot closer than I am!!
Posted by Lakota Queen (Member # 8338) on :
I had been very sick for eight years after being bit by a tick on my leg. However, I was told it was just ring worm & never tested for Lyme until this past spring.
Two years ago I was referred to a neuorologist because I had been diagnosed w/ Narcolepsy.
My CAT Scan showed lesions all over my brain. I was also diagnosed w/ Nystagmus, the bouncing of the eyes w/ vertigo. The neuro opthmalogist said I had some damage to my optic nerve.
I have tingling all over my body and arthiritis has now set in. I also have severe flu like symtoms w/ thyroid and adrenal dysfunction.
The neuro says I have Mild MS. I have refused any treatment for MS.
I hope to start antibodic treatment in addition to my holistic treatment really soon.
Tara Pretends Eagle [email protected] Posted by mylyme2006 (Member # 8459) on :
Ok, here's my abbreviated notes. If you'd like the entire book, I can send it to you in a file attachment--it's long.
Was in PA hiking June '05. Got bullseye rash, but didn't realize it was--thought it was a spider bite.
Early September '05 woke with intense pain in right leg, back pain, pain base of skull, muscle weakness, fatigue. Just sudden-like.
By Sept. 13, 2005 was at the family doc. THey thought it was MS. By then, I'd added memory difficulties, grip and gait problems, numbness of feet/legs, sciatica, trouble swallowing, blurry vision,headaches, shoulder, wrist, hand pain in addition to all the lower body pain.
I've already been dx with fibromyalgia, so they thought it could be that, too, but the pain was so different, I didn't believe them.
Family doc ordered brain MRI and lots of blood tests (all tests negative). Went to internal med doc, he ordered different blood tests, spinal MRI, and echo of heart (again all normal--MRI showed possible Chiari abnormality of brain, 3 bulging disks in neck, and something in thoracic spine).
Sent to neuro. Went for more blood tests, EP testing, EEG, chest xray. Lyme test was neg with ELISA, so no WBlot done.
By second neuro appt, I couldn't remember 3 words together or simple directions. I'd quit working. I'd get lost, and couldn't remember how to do things I've done forever, like cooking. I also realized I'd forgotton about the rash. Son reminded me. TOld neuro who said Lyme ELISA neg, so not lyme. I didn't know enough to argue. By third visit to neuro, he decided I was just depressed and wanted me on wellbutrin which I've refused to take. I haven't heard back from him even though he was supposed to call in December '05 with a testing appointment for a memory test. I think he dropped me, which is fine, since I really don't think I need him anyhow. I plan on going to a LLMD (closest one is 5 hours away) as soon as my tax refund comes in so I've got money to pay for all this. My insurance is denying all the previous tests because doc isn't sending info to them. Figure they'll deny LLMD too.
This is just the basics, but if you want the entire file, just let me know.
Posted by timaca (Member # 6911) on :
This is good. Thanks for your story....keep us posted on what the LLMD says...
Posted by timaca (Member # 6911) on :
If, by "original writer" you are meaning "Timaca" who started the thread...that's me.
No, I'm not seeking any kind of disability.
I am seeking to let this particular neurologist know (for he is a well known neurologist and has the ability to inform other neurologists through lectures, seminars and journal articles) that people with lyme disease who have neurological symptoms are usually not diagnosed by neurolgists! And that it would be extremely helpful to us if neurologists would begin to have lyme on their differential diagnosis, so that we could be diagnosed in a more timely fashion. Or at the very least have them say to us..."I'm not sure what you have, but it could be lyme disease. Here's some doctors you should consider seeing...or here's some tests you might consider getting."
That's my goal. I leave a week from today for NY...and I see the neurologist on the 6th. Hold a good thought for me that it will go well and he will hear and understand our plea!
Timaca
Posted by luvmycat (Member # 4984) on :
I saw four neurologists. Two of them at a large teaching hospital.
Neuro #1 said that my symptoms were caused by the fact that I had a hysterectomy years before and stress. (Light sensitivity of the eyes and hyper-intense white matter lesions on the brain????)
Neuro #2 insinuated that perhaps I had been abused by my father as a child.
Two neuros in my hometown:
#1: psycho-analyzed me asking me about my faith, prayer, relationship with my husband, etc. No diagnosis. Somatization disorder was what was in the notes.
#2: Diagnosed me with benign fasciculation syndrome because I had very violent twitching but began to doubt me when I reported trouble swallowing. Gave me Paxil and Ativan.
Posted by timaca (Member # 6911) on :
Wow! Amazing, Luvmycat!
Your notes are added to the report. I see the neurologist a week from today (on the 6th!) Hold a good thought/say some prayers that he listens!
Timaca
Posted by schnuddelka (Member # 8031) on :
My situation is atypical, at least as far as my doctor's say. I began with a splitting headache, fever and nausea. After the headaches got really intense (like a band around my head - which two years later we discovered that my occipital and trigeminal nerves had been permanently damaged by the lyme) I went to a neurologist. I was treated for a year and a half as a migraine patient, as my joints were all fine thus far.
I spent five weeks inpatient at the Michigan Head Pain and neurological Institute in Ann Arbor and they discovered that the nerves were causing the pain, not migraines. A huge revelation.
I went through a year of cortozone shots, occipital and trigeminal pulse therapy, and finally had a peripheral nerve stimulator implanted on my occipital nerves and my trigeminal nerves. A painful procedure, but since I have gone from having 8-10 pain all day every day for two years, to actually having pain of 4-5 most days. It was a miracle!
When the intense sharp nerve pain was under control is when we realized that I had quite a bit of arthritis throughout my body. I was diagnosed with fibromyalgia, chronic fatigue syndrome, and MS and psychosymmatic problems - HA HA HA. However, none of the medications for these diseases helped me in the slightest.
Finally, my new family doctor looked me over from head to toe and scoured my records and decided...there's no reason for an athletic, active thirty year old to all of a sudden, over six months or so, to become so ill with so many sypmtoms. She suggested that it may be lymes. She put me on doxycyclene for three months, but she was unaware of what a herxheimer reaction was. So, when I ended up in the hospital three months in a row four weeks apart for a week at a time, she thought the antibiotic must be making me sick somehow and quit the antibiotic therapy.
Finally, I met Dr. S in Hermitage, PA He is very Lyme Literate, and had me send a sample of my blood to the Bowen Research Institute and for two hundred and fifty dollars, I found out that not only do I have lyme disease, the ratio of lyme in my blood is 1:128. The highest ratio they measure.
That was three months ago. Since then, I got a central line in and have been taking 2g rocefin iv push every day. I've had awful herxheimer reactions, landing me in the hospital again unable to walk or move at times, but am told they will get less and less intense with time.
Soooo...the moral of the story is that I have been diagnosed with Lyme Encephalitis (sp?) and disseminated systemic Lyme.
If they had put me on antibiotics in the beginning, I would be cured...we live in the middle of the Nicolet National Forest for God's Sake...and our doctor's don't know anything about lyme disease! Sorry about the rant.
I still have two peripheral nerve stimulators on my occipital and trygeminal nerves to mask my nerve pain from permanent damage due to lyme disease. The lyme has also affected my cerabellum. I have no balance, and cannot touch my finger to my nose when my eyes are shut. I wear a duragesic patch, take my rocefin and a few other medicines to counter act the distructive nature of the antibiotics.
I will always have lyme disease, however now that we know that it is so deep in my brain, and how it behaves, we can treat and manage it to the best of my Doctor's ability!
I hope this helps you. God knows, I have to have gone through this for some reason, maybe it's to help the next person get diagnosed sooner and with better results!
God bless you, and thanks for taking action! If everybody did as much as you, lyme awareness would be much more prevalent.
Jenn a.k.a. schnuddelka Posted by siggy (Member # 8654) on :
This will be on the side, but still not totally far out.
I went to my GP today, fearing that I might have Lyme. He turned out to be one of those that believes 2 weeks abx iv did the job. Now my symptoms must be permanent damage. ( I politely disagreed with him.)
He is sending me to do an MR and then a neuropsychological test. I don�t have much faith in that though. So I will try get hold of a LLMD. Anyway, he also took a lot of bloodsamples, I spesifically required the IgG and IgM. (And I tried to enlighten him about the importance of doing an WB, not ELISA. He didn�t listen to me.)
Well here I am. What do you lymies reckon; will an MR and neuropsych-test do any good if I got Lyme?? I refuse to believe my symptoms are permanent damage to my brain!!
Arrrrgh!!!! Posted by timaca (Member # 6911) on :
MR....do you mean MRI? They can show such things as tumors in the brain, and MS lesions, but they don't tell you much about lyme (unless the lyme causes lesions in the brain, and in some people it does).
It IS good to have an MRI done...to check the brain out (mine was normal). My brain SPECT scan was not normal, however, and it's abnormality was indicative of lyme disease.
I did the neuro-cognitive testing too, and was slowed in some areas.
Probably your best bet is IgG and IgM western blots at several labs (like in the U.S.--Igenex, Medical Diagnostics Lab in New Jersey, and University of New York at Stony Brook.)
Good luck....sounds like your doctor needs some education. Wish he were more open to it.
Timaca
Posted by MarriedtoLyme (Member # 8021) on :
Hi Everyone, My husband started his Lyme journey December 2004. He was sent to a neurologist by his primary for the following symptoms: Motor Incordination resulting in clumsiness, falling, tripping and dropping things;dizziness;intermittent slurred speech;blurry and double vision;migratory pain;profound fatigue(would work 2 hours then nap or lie down for 1 to 1 1/2 hours then repeat the cycle);shin pain;headaches;weakened right leg;burning and tingling of the skin;and insomnia.He had been bitten by a small tic 21 months prior and had developed a circular rash which his PCP said was NOT a bullseye. She dabbed antibiotic ointment on it and sent him on his way. The above symptoms were very gradual in onset, but followed a flu like period within the 1st 3-6 months after the tic bite. He had an abnormal MRI that the neurologist could not make sense of. He had a negative Western Blot at Labcorp.The neurologist pronounced "it's NOT Lyme(after I suggested it might be) but did not know what it was. 3 visits later,still no idea. We went to an Infectious Control doctor who was reported to be quite experienced with Lyme. He agreed it sounded like Lyme and told us we needed to repeat the Western Blot. He suggested MDL,not Labcorp. The results were glaring CDC criteria positive.He saw a neuro-opthamologist who diagnosed him with an intranuclear opthamic lesion which he told us was often seen in neurological Lyme.He was started on IV Rocephin and improved dramatically, but did not have a total remission. He developed gallbladder attacks presumably from gallbladder sludge from the Rocephin and was changed to IV Doxycyclline which had to be stopped after 2 months due to toxicity which almost killed him. After a month off antibiotics to rest his liver, he was started on oral Ceftin and Probenecid was added a month later. He definitely lost ground after changing to oral antibiotics but is still significantly improved from pre treatment. His Infection Control doc recently sent us to a neurologist in NY (to see if there was something additional which could be added to his medication regime since he has not had a total remission)It was like deja vu.The neurologist did not even review all of his records(lab tests, MRI and Spect Scans, neuro-opthamology appointment summaries, treatment summaries from previous specialists). She pronounced the all too familiar "You don't have Lyme". Of course, she couldn't say what it was, nor could she explain why he had improved so greatly on antibiotics, but she told us to stop them. When I pressed her about the positive Lyme from MDL,she replied. "I would get it repeated---at a reputable lab like Labcorp or Quest next time." We have not stopped the antibiotics and have an appointment with a local neurologist who has a great reputation for treating neurological Lyme.Our first neurologist actually became quite histrionic when I told him we were going to begin treatment for Lyme from the Infection Control doctor. He said "There are Lyme factories out there you know-you need to stay away from them-they treat anybody even if they don't have Lyme." I really believe that some doctors are afraid of negative action by their state medical boards for treating patients for Lyme if they have a negative Western Blot or for treating beyond the timeline laid out by the insurance companies.And some of it is lack of knowledge on the parts of the doctors.Good luck, Timica, with your doctor awareness project and God help us all if things don't get better in this country re Lyme recognition and treatment! Denise
Posted by timaca (Member # 6911) on :
Thanks, everyone, for your replies.
Hold good thoughts/say prayers on Monday, when I see the neurologist and plead our case.
I'll post when I get back.
Timaca
Posted by timaca (Member # 6911) on :
Hi all~
I spoke with Dr. L, the neurologist in NY. He really was very kind and gentle and had a sense of humor about him.
He agreed that lyme was the most likely cause of my neurological issues.
He listened to my concerns about how neurologists often miss the lyme diagnosis in people. I handed him your stories; printed out in such a way that it was confidential.
He said that he would read them. And you know what? I believe that he will. He seemed like a genuine kind of guy.
I asked that he would educate the doctors and medical students on lyme disease. He said that he would consider how he might do that.
And he gave me his e-mail address, and we agreed to stay in touch.
So...I feel pretty good about the outcome of our meeting. I do feel like he will read your stories. I pray that he will be touched enough by them to take action to educate others.
Thanks for posting your stories.
Timaca
Posted by DeniseBunty (Member # 6559) on :
Hi My son and I have Lyme, I have found using biofeed back for alternative medicine has been working for him , it is in his brain he has had seizures, we still see them once in a while because the doc tor is working on that part of the brain, he says anything that messes with the body wil mess up the brain because of course the brain controls everything, it has been neat to see the changes in him, he has alot of anger and the brain gets stuck on thoughts, just look up biofeedback and you will be amazed of what it can do for people, I wish you peace with your fight with Lyme I found for me since I have arthritis diet is the best thing for me, I had to get off the sugar and losing weight will help.
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and am taking the Theralac daily. My LLMD and Wildcondor both recommended Florastor as well, for GI issues...so that is on order too. My, oh my, I've never spent so much time discussing such things! ![[lol]](graemlins/lol.gif)
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tor is working on that part of the brain, he says anything that messes with the body wil mess up the brain because of course the brain controls everything, it has been neat to see the changes in him, he has alot of anger and the brain gets stuck on thoughts, just look up biofeedback and you will be amazed of what it can do for people, I wish you peace with your fight with Lyme I found for me since I have arthritis diet is the best thing for me, I had to get off the sugar and losing weight will help.