posted
This was my fourth visit to the head of Neurology in the past three months. Although I have noticed differences in the side of my neck (muscles on left seeming getting smaller plus weakness) he said he just could not see it.
He started tapping my arms again to see if my muscles would involuntarily move on their own, nothing happened although i have muscles twiches everywhere, sometimes even jerks.
I also have a hell of a time swallowing still, feels like my throat and left side of tongue is numbed with novacane yet when i touch it i can still feel the touch (unlike novacane).
Doctor again looked me over, said he could see no sign of muscle wasting that I should worry about. He tested my strength and also said no worries to that either, i am still very strong. I told him that the left side of neck feels tight and feels weak, my right side feels like its over working to hold my head up. He was like I dont see anything.
Sent me to MRI of head, this is my 3rd MRI in the past 3 months, this one is without contrast. The other two werre done in NYC right at the onset of my symptoms, one showed an occlusion of my left vertibral artery (blockage), the one done the next day (at Columbia Pres) showed that there was no block of my left vaterbral artery (they did give me blood thinner for a couple hours).
I am on a treatment of biaxin and ceftin at this time from Dr. H here in LA. I dont seem to be herxing or seeing much improvement, been on abx on and off for about 2 months now (Doxy, biaxin, ceftin thus far).
Biaxin and ceftin only been on for 6 days now so hopefully we will see some results.
I have been through the gauntlet of symptoms at first:
-extreme left sided cranial nerve pain. -left sided ear and eye problems, feeling of swulleniss. -super stiff neck (not Able to turn my head right or left). -nausea and vertigo. -night sweats. -loss of weight (18 pounds in 3 months). -Buring pain on left side chest. -soar ribs on the left side. -slowed heartbeat, beated very hard. -electricty surging down my left leg (constant). -Major fatigue. -Buring pain radiating down the left side of my neck to my shoulder stopping at my elbow. Tempreature was always lower than normal (97 or lower). -major back pressure pain, seemingly between or on certain vertabrae.
My symptoms have all changed since my first abx treatment although i have never seemed to herx.
Now: -Left upper shoulder weakness -left neck weakness (slight wasting, but doc said no, sometimes feels like its hard to hold head up). -left arm heavy (slight wasting in left thumb muscle, palm). -back pain (mostly pressure pain on certain mid to upper vertabrae. -Tongue weakness, feels tight and actually aches sometimes. - swallowing problem, neck feels tight and throat and left side of tongue feels numb although it is not. -Major Fatigue. -Right pinky and tip of ringer finger numb, doctor seemed most concerned about this, said it could be from resting my arm on my desk at work.
This is what my western blot looked like done by igenex:
IGM 31++ 34 IND 39 IND 41 IND 45+ All the rest were negative.
IGG 39 IND 41++ 58+ all the rest were negative.
He said he sees nothing to be worried about yet, although he has done so many tests on me its not even funny. I have been basically tested for everything you can be tested for by blood.
Neuro thinks Lyme can do this to you but he doubts it. but in terms of his knowledge on Lyme its limited.
My grandma died of ALS at 73, I lived in and around Lyme, Connecticut all my life so I am more likely to have Lyme then anything else but who knows.
Is the neuro wating for me to fit into a box before he diagnoses me for ALS? Wouldnt he say something like this could be early signs of ALS? How can I be reassured that this is not ALS? I had a EMG which was negative about 2 months ago. Any ideas would be wonderful
My Lyme Doc does not seem to want to treat Lyme as much as he wants to see about thyroid and all this other stuff. You guys said band 31 is highly positive and there are other Lyme bands that are IND which means something is there but not enough to make +, some docs say thats positive.
I want to believe I am positive for Lyme and thats what this is but I have no vindication as of yet, even Lyme doc does not seem convinced, he has never told me i have Lyme Disease.
Am i going to the wrong doc? Should i be treated more agressively here? All this came on me so fast I dont know what to do anymore.
-Luke
Posts: 167 | From Los Angeles | Registered: Jan 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Hey Luke,
I cant answer all of your questions but just wanted to comment.
In general most nuerologists dont know a whole bunch about lyme, sad but true, so please keep that in mind. Just because he said he could not see it doesnt mean it isnt there.
I had the tongue numbness that you described....i went to 3 ER's got kicked out of one because they said i was fine and there was nothing they could do...labs were fine.
I also had swallowing problems i feared i had ALS...it was horrible. This lasted from Sept-about October. I believe it was the brief zmax treatment that kicked it for me.
In my own experience going off abx isnt the smartest thing to do....my LLMD told me it is like starting all over again. How long were you off the abx?
Ive had a lot of your symptoms since i was hit hard in August. My symptoms also changed since first month of treatment.
Hang in there
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
I feel your pain. I am in the Kaiser- Dr. H go between myself. I am putting my trust in Dr. H but jumping through hoops with Kaiser so that they will test my liver and continue to give me my other scripts- they won't cover any abx.
Have they done any nerve conduction studies? My Kaiser neuro redid mine recently and said she could tell that the damage was defintely caused by an aquired cause and was not due to MS, genetics, etc. She still wants to do a spinal to rule out everything else. She does admit that if the spinal is negative for Lyme it won't mean anything but that a positive would. My hope is that this will finally convince her to over-rule the ID who is sure it can't be LD. I only have a positive ELISA and a IND WB.
I know how hard it is to not have black and white answers.
Dr. H told me that he thought my IND Western Blot would most likely be positive now after a few months of treatment. Can you get Kaiser to test you again? I will be asking for another at my next visit.
Hang in there!
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Luke,
I'm pretty sure there are actually ways doctors can measure your muscle mass to test for wasting. Has this doc done that?
As far as ALS, I know somebody who was diagnosed with ALS but actually had Lyme. He was improving 6 months after the doctor who diagnosed ALS said he would have passed on.
I have muscle twitches as well as jerks and involuntary movement (myoclonus). Tapping my arms won't cause it. It's triggered by fatigue, stress, exercise and visually seeing other people twitch or jerk. Watching Michael J. Fox talk totally gets me going
It is good to get tested for everything. Because you do want to know everything that is going. There could be more than Lyme. But I am also always skeptical of doctors that right off your symptoms because they don't see it.
-A
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Luke, I am sorry you have to go through any of this. I remember when I told my neurologist that I had difficulty swallowing, choked during meals etc. His advice was to 'chew my food' As stated above, even if you believe everything going on with you is directly related to LD, allow other tests to be done, it helps to rule out other diseases as contributing to your overall health issues. Right now I am waiting on tests done for multiple sclerosis. I don't believe I have MS, but my Doctor sees all the symptoms of MS [LD mimicks it quite closely] and wants to be sure. Every time I see my Doctor I bring printed studies and articles on Lyme that I get off the internet. He is receptive to the new material and I feel that I am helping to educate him about LD.
Hang in there. I know it's tough. I've been fighting this battle for 11 years now. Take care, Sharon >^..^<
Current symptoms: Rt. foot loss of sensation Left leg numbness/weakness Constant electrical current coursing through my body Migraine vertigo Nystagmus Eye pain Dizziness Left arm pain/weakness tingling both hands loss of sensation nose and left cheek back pain bladder difficulties constipation I'm sure there are a few I've missed.
-------------------- LD 1995 [dx'd 1997] Never had antibiotic treatment Stage 3 skin cancer ['04] Diabetes2 ['05] Name an LD symptom, I've probably had it or have it still. >^..^< Posts: 20 | From Author, homemaker | Registered: Mar 2006
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posted
I wouldn't worry too much about what the neuro says. There are VERY few neuros who recognize Lyme or know ANYTHING about it.
I would continue the Lyme treatment and see what happens. Getting a dx of ALS will not help you as far as I know. IF you really have it, you'll eventually find out.
If you DON'T treat for Lyme, you will be in big trouble if you actually have it. I think your test showed enough Lyme-specific bands to be Lyme.
What I think DR H may have overlooked are your possible BABESIA symptoms:
-nausea and vertigo. -night sweats. -loss of weight (18 pounds in 3 months). -slowed heartbeat, beated very hard. -Major fatigue. Tempreature was always lower than normal (97 or lower). [could also be lyme] -major back pressure pain, seemingly between or on certain vertabrae.
There are enough possible babesia symptoms there that you really need to get TREATED for it, no matter what the test results say.
You can't beat Lyme if the babesia isn't treated.
Were you tested for babs?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I have been tested for babeisa but through keiser who sent it away to another lab which i am not sure of the the name of the lab. Said it was negative. What kind of tests are there for babesia, something like the western blot, or is it only a PCR test like Lyme Titer?
I was also thinking about being tested for Mycoplasma as well? Is MDL the best for that?
Posts: 167 | From Los Angeles | Registered: Jan 2006
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
There's over 50 strains of babs, and only two strains can actually be tested for. Based upon symptoms you almost assuredly have babs, the symptoms are classic. I'd shoot for the babs treatment and forget about testing.
Your already taking biaxin. See if the doc will prescribe plaquenil. The combo of biaxin, plaquenil and artemisinin should be an effective babs treatment.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
Luke, This is just my opinion based upon years of experience, Kaiser will not be helpful with Lyme. In fact, I do not believe they are helpful with unusual conditions. They are in the Yale camp when it comes to Lyme: overdiagnosed and overtreated.
Kaiser head neurologist missed my daughter's Lyme for years. She had severe neurocognitive declinee, seizures, and became like a mentally retarded autistic aggressive seizure disordered person. Now she is being treated for Lyme, even though her Igenex tests, like yours, are equivocal.
I also just saw a neurologist after developing major shaking and trembling and seizure-like episodes. After an MRI, a nerve conduction test and an EEG, all were normal and he said he did not know what I had but it wasn't neurological.
Yes it was. It was neurological Lyme.
I totally sympathize with your fear about ALS but I have known people diagnosed with ALS and it turns out to be Lyme. They improve with abx and alternative treatment.
You've gotta have a LLMD, and I guess you do, Dr. H. Even if he hasn't written down Lyme Disease as a diagnosis, it sounds like he is treating you for it. I would say talk it all over with him, and keep going with treatment. It has been a year before I really have started to see results.
If you are anxious about a firmer diagnosis, and have the money, go to the Lyme Diagnostic Clinic at Columbia Presbyterian. The evaluation costs $3200 and takes two days, and you would have to travel there. I almost went myself, with my daughter, but after a long phone consult with them I decided against it. It takes about 3 months to get in. Call Dr. Kathy Corbera, you can get her number on the website -- google Neuropsychiatric Lyme Columbia and you will get their website.
My family and I have had to reconcile the cost of having Lyme and being chronically ill. I don't know what resources you have, but we had to reprioritize. We just did our taxes, and spent $25,000 last year on tx.
I "fired" Kaiser and am glad I did. I know not everyone can do this, and they are still good for broken legs, etc. And they will cover pain medication if you find the right doctor. But Kaiser is limited in it's ability to help with these unusual diagnostic situations.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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liz28
Unregistered
posted
Luke, I'm half asleep but am going to pretend it is possible to write something coherent.
The electric shock symptom is a huge symptom of something-or-other, I visited a Lyme literate neurologist a year ago and that was a make-or-break question. He never said what it meant, though, and it seemed to be involved with Lyme. You may wish to follow up on that in your research.
Your Lyme antibiotics are comparatively mild drugs, they definitely affect Lyme but they are mild compared to some other ones out there, especially if you have babesia. It is a possibility that you just need stronger abx.
A good way to follow up on babesia is to try an herb called artemisinin. Nutricology makes a good brand, you can get it from Vitamin Shoppe, Vitacost.com, or Allergy Research Group. If you take it for a week, it should cause a flare in symptoms if you have babesia.
It would be intolerably cruel for a doctor to make a snap judgement about something like ALS. And if that were the issue, you'd probably have gotten a diagnosis by now. But two months is a long time to wait for answers for something this serious.
When I was at my most disabled, the drugs that kept me alive were doxy and ceftin. They didn't work too well, but they were just enough to keep going. If you are in the same boat, you may wish to pursue these two among your various combinations. Doxy should be at 200mg, twice a day.
Also, with all these drugs, you have to splurge and take the best probiotics you can. It would be great to just slink by with the cheap stuff, but unfortunately, it doesn't work nearly as well. Yeast symptoms can mimic Lyme, and disable your body's immune response.
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bettyg
Unregistered
posted
breaking this up for us neuro lymies to read....
quote:Originally posted by lucy96734:
I feel your pain. I am in the Kaiser- Dr. H go between myself. I am putting my trust in Dr. H but jumping through hoops with Kaiser so that they will test my liver and continue to give me my other scripts- they won't cover any abx.
Have they done any nerve conduction studies?
My Kaiser neuro redid mine recently and said she could tell that the damage was defintely caused by an aquired cause and was not due to MS, genetics, etc.
She still wants to do a spinal to rule out everything else.
She does admit that if the spinal is negative for Lyme it won't mean anything but that a positive would.
My hope is that this will finally convince her to over-rule the ID who is sure it can't be LD.
I only have a positive ELISA and a IND WB.
I know how hard it is to not have black and white answers.
Dr. H told me that he thought my IND Western Blot would most likely be positive now after a few months of treatment.
Can you get Kaiser to test you again? I will be asking for another at my next visit. Hang in there!
posted
breaking this up for us neuro lymies to read...
quote:Originally posted by sharonlacouture: Luke, I am sorry you have to go through any of this. I remember when I told my neurologist that I had difficulty swallowing, choked during meals etc. His advice was to 'chew my food'
As stated above, even if you believe everything going on with you is directly related to LD, allow other tests to be done, it helps to rule out other diseases as contributing to your overall health issues.
Right now I am waiting on tests done for multiple sclerosis. I don't believe I have MS, but my Doctor sees all the symptoms of MS [LD mimicks it quite closely] and wants to be sure.
Every time I see my Doctor I bring printed studies and articles on Lyme that I get off the internet.
He is receptive to the new material and I feel that I am helping to educate him about LD.
Hang in there. I know it's tough. I've been fighting this battle for 11 years now. Take care, Sharon >^..^<
Current symptoms:
Rt. foot loss of sensation Left leg numbness/weakness Constant electrical current coursing through my body Migraine vertigo Nystagmus Eye pain Dizziness Left arm pain/weakness tingling both hands loss of sensation nose and left cheek back pain bladder difficulties constipation I'm sure there are a few I've missed.
Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
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