posted
Hi all, You have helped me so much. I saw dr. P in connecticut this week per your recommendations. He is brilliant. Has me on doxy 300mg/day. I have debilitating headaches, teethpain, earaches, chest pain and joint pain. The worst are the neurological symptoms nerves on fire. I have been on abx now for 15 days (first 13 200mgs/day then past two on 300mgs/day)
My previous history...July MRI was fine. Told the headaches were just migraines and was given triptans-didn't help. Told the ringing and earaches were normal. Told I had fibromyalgia when the arthralgias kicked in. Told by my IM that "I dont want to go down the lyme road" since my sero tests were neg. Told by the Rhum that I had TMJ and pyrovirus (in past). Told by two neuros that I was in perfect health. Told by the ER doc when I thought I was having a hear attack that he was to busy to figure out my problem but could rule out the heart attack.
Here is the kicker. I go/went to school in Lyme, CT. I am /was a plein air painter. My husband is a hunter and drags dead deer into our yard constantly. I have two dogs I pull ticks off constantly.--my docs are all in CT.
Waiting for lab results from stonybrook (this wed). Then dr. P wants me to send more blood to igenex in three weeks. Seems we need positive test results to get credibility. (Cancer would be easier?)
Here is the thing. The pain comes and goes now. Hourly it can change. But when it comes, I feel like I should be in the hospital. I cry daily from the pain pounding in my head neck and ears and eyes. I am scared and so are my kids and husband. I have read that blindess can result from intense intracranial pressure. What should I do? Is it normal to wait things out and hope for the best? How does one just go to the hospital? Thanks for any help. Kim
-------------------- We are spiritual beings on a human journey...
posted
The only way I got any conventional treatment was after getting a spinal tap done.
My mother had a friend who was a chief neurologist at a hospital outside of the Northeast (in the South, where the anti-Lyme brainwashing is not quite so severe in medical circles) and he got me an appointment with an infectious disease specialist.
She felt more comfortable treating me because the head of a department was backing her up. For just once, hospital politics worked in my favor.
I had a very elevated white blood cell count in my spinal fluid,
indicating a central nervous system infection, so I was diagnosed as having a 2 year long bout of meningitis (there are no two year long bouts of meningitis normally) at the time, and was able to get IV antibiotics as a result.
Generally, though, I have relied mainly on alternative medicine, mainly using essential oils, and my own devices.
I knew a lot about health before I got sick because of training in natural health.
Still, it was a relief to get some acknowledgment and help from the conventional medical system, which usually abused me and turned a blind eye to my health problems.
Farah
Posts: 208 | From New Mexico | Registered: Dec 2005
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posted
I like your handle, "humanbeing". Especially after you talked about how you were treated by so-called medical professionals. Made me remember when I pled a couple of times... "I am a human being".
I can't believe we're made to feel like we've done something wrong or are faking. Before this, I always felt like the vast majority of docs would really try to figure out what was wrong with you, instead of, if you're lucky, running a few tests and then pronouncing you "fine", even though you tell them what's wrong.
Even when you find out it's lyme, a lot of people will discount it, like it's no big deal.
Unbelievable.
Posts: 856 | From Texas | Registered: Jan 2005
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posted
Thanks for the feedback. Farah, how are you able to manage your disease. I am new to this but thought antibiotics are the only way to kill the bugs. Did the antibiotics help you at all?
Any help with pain? Thanks, Kim
-------------------- We are spiritual beings on a human journey...
When you said the worst symptoms are the neuro symptoms "nerves of fire" I was wondering if you could describe that symptom a bit more. This sort of the thing is my most major symptom and I am wondering if what you are experiencing is similar to what I am experiencing.
-David
Also - Sending you a pvt msg!
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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posted
A spinal tap has a 20% chance of showing up positive for Lyme. That means you have an 80% chance it WON'T show up.
If you have the test done and it's negative, your insurance company might have a heyday with it.
Personally, I would only have a spinal tap done unless my life was in immediate danger.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
In answer to your question, the short answer is nada..for Lyme.... it is basically useless due to low sensitivity but if it is positive then you have confirmed your diagnosis.
On the other hand it might be useful to rule out other nasties so it may be ordered up as part of an investigational proceedure.
A few notes after re reading your post.
If the MRI was clear, high intercranial pressure is very unlikely so don't worry about that too much. You will also likely feel like throwing if you had high inter cranial pressure (ICP). High ICP shows up in the MRI as compressed ventricles, sometimes slit like in an axial view) and is very charateritic. Only a totally drunk baboon trained in radiology (but dropped out) would miss it.
They would never do a lumbar puncture (spinal tap... LP) with high ICP. It can be fatal.
Lyme is only one of number of diseaes that can go intercranial. You have to look at the endemancy in the areas where you traveled (with an enphasis on more recent travel) but things like bartonella, west nile, babesia as well as a number of typically animinal only encephalopathies can be carried by ticks (and mosquitoes etc).
You had best see a Dr that specializes in tick bourne diseases, not just Lyme disease.
Lyme is only one of a bunch of bad guys out there, ticks are a common source.
For some of the other above mentioned diseases, as well as a few more an LP is usefull. Things like CSF protein and glucose levels get upset by many brain infections. The color of the CSF also can be affected.
I hope I answered at least some of our questions.
Posts: 1184 | From north america | Registered: Feb 2003
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posted
I've had Lyme 4x since '76 in No. California. The headache made me temp. blind and in the fetal position. I was hospt for 10days and of course they did not know anything then. They said a stroke @ 20 yrs young.
It came and went until I was tested positive and reinfected in '99. Then the headache stayed almost daily for 6 yrs. Like swelling inside my skull.
All tests, besides WB and LUAT, were negative. I finally started on B-12 injections and the HA subsided. My MRI's in the last 3 yrs show lessions. But really the B-12 helped me.
also for temp. relief I took 2.5 mg of Ambien (sleep pill) but it only took away the pain. Try what is safe and see what works.
Do get a 2nd, 3rd opinion. Best to you, Shar <><
Posts: 52 | From Arizona , USA | Registered: Jun 2002
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Sue vG
Frequent Contributor (1K+ posts)
Member # 3143
posted
If you are responding to lyme treatment, IMHO there's no reason to subject yourself to the risk of an LP.
Why not give the treatment some time and if it's not touching the neuro symptoms after a few months, then have the LP.
I've had neurolyme for 5 years, no one has recommended that I have one, and I would refuse it if they did. The lack of an LP has not changed the course of my illness or treatment, nor would having one...unless it came up negative -- in which case I might run the risk of being denied treatment.
It took several months of treatment before my neuro sx were significantly cut back. Minocycline made a big dent in my neuro sx.
Posts: 1307 | From TX | Registered: Sep 2002
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posted
I am not a Dr, but I speak strongly against spinal taps... I had one done a year ago, and I can still feel the exact location the needle went in. I've had MRIs of my back since, but nothing has come up. No matter what the doctors say, there is no way the damn thing won't hurt. My doc said that the only thing that has ever sat as still as I did was a corpse in school, but I was still in pain. They gave me Morphine, Vicodin AND Demorol, but I was still in excruciating pain (and yes, I stayed horizontal for 3 hours after the tap). That headache that the tap gives you is quite literally the worst pain one can endure. Never again!
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
posted
Dr P was my dr for several months i believe he is getting more and more conservative because of recent problems with other drs. but he testified at the CT hearings last year...........and the whole lyme scene is bewildering.
seems as tho things are going backwards rather than progressing.
i moved to NY for treatment. having a good neurologist was the first step towards managing this disease. am taking depacote to prevent migraines.......working well, and migranol for flairups of eye pain and head pain.
one thing that most "lyme" drs miss is treating symptoms while treating the disease. there are MANY different things for treating headpain
but dr p wouldn't or couldn't help me, and altho i really liked him for quite some time, when i completely fell apart, he shrugged his shoulders and backed off.
had a brain scan with dr. fallon at colombia, and found out that i was at the worst stage of brain hyperfusion.........cause of fog and head pain
have not heard positive results from ANYONE getting a spinal tap..........lyme doesn't show up
got to get tested at igenex for all tick diseases
Posts: 661 | From NY | Registered: May 2003
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Kim, my hubby has bad neuro problems...that is his worst problem now. He's had various joint aches and pains now and then.
But the Neuro problems are terrible.
No, I don't think cancer would be easier. You can get through this with the right meds.
Stay strong and best of luck to you.
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
Thanks for all the posts and private messages. I am overwhelmed with gratitude for your understanding. This is an isolating process and life changing.
If I get well, I will be a beacon of advocacy in CT. Especially the LYme area!! But will I ever get well? Somedays I think not... Best, Kim
-------------------- We are spiritual beings on a human journey...
rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
quote:Originally posted by Lymetoo: A spinal tap has a 20% chance of showing up positive for Lyme. That means you have an 80% chance it WON'T show up.
If you have the test done and it's negative, your insurance company might have a heyday with it.
Personally, I would only have a spinal tap done unless my life was in immediate danger.
DITTO!!!!!
I have chronic LD, in a remission currently. But, that was only AFTER over 3 years of antibiotics (abx). My spinal tap showed no lyme before getting a diagnosis... SO, Nuerologist escorted us to the DOOR ...literally, after we told him that the LD doesn't show up most of the time.
Don't get something into your medical records that will bite you in the end.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Human Being! You WILL get better. And you don't need a lumbar puncture, either.
Like you, I had excruciating headaches for a couple of years before being diagnosed with neuroborreliosis. I was ready for a brain transplant! I was so miserable. I did finally get relief with the Imitrex/Relpax type drugs but you can't exactly go gobbling those babies!
Before my Lyme diagnosis, during the time my neuro duck believed I had MS even though I really felt I had Lyme, he insisted on a spinal tap.
The procedure wasn't really that bad. Despite lying down, drinking lots and doing everything right, I had a violent headache for several days, then miraculously was headache free for several weeks!
My cerebrospinal fluid -- even the tiny bit I siphoned off to send to IGeneX - to my neuro's scoffing - was negative for borrelia. It just doesn't like to live there. However, my CSF proteins were elevated and I had abnormal values on my CSF multiple sclerosis panel, though no oligoclonal bands. (Though even the presence of oligoclonal bands doesn't mean much as they're present in Lyme AND MS.)
It cost a lot of money and didn't add much, though I like to be as thorough as possible diagnostically speaking, and when your head hurts that badly it's hard to believe it could just be freaking bacteria!! But apparently that'll do it!
Anyway, I later tested highly positive on western blot. So I really could have done without the spinal tap. However, as to the evoked potentials testing, it was kind of good to have objective evidence of why my arms hurt as there is apparently some demyelineation going on in my nerves.
And I thought it was too much fishing! Hah!
Have faith that no matter how horrid your headaches, keep pounding away with the antibiotics and you will come out the other side of it and feel SO much better you won't believe it. I did, and I look back now and can't believe I lived like that!!!
Welcome to LymeNet!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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quote:Originally posted by lymewarrior03: have not heard positive results from ANYONE getting a spinal tap..........lyme doesn't show up
evidently you've never read any of my posts. i was diagnosed in 1989 by a neurologist who saw me in the ER with meningitis. he did a spinal tap and it was positive for Bb. that's how i was diagnosed. i was also diagnosed with a relapse in 1996 via a spinal tap as well.
so, yes, there are indeed some of us out here with positive Bb results from spinal taps.
Posts: 689 | From western MA (we say buttER and pizzA) | Registered: Nov 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Humanbeing,
I've had a battery of neurological and physiological tests for my Lyme symptoms. I finally tested positive for Lyme itself, but nothing ever showed up on any of the tests.
By the way, with regard to your cancer statement, my best friend is a two-time breast cancer survivor and says that Lyme is, by far, the nastiest disease she has ever seen.
Hope you start feeling better soon.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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