posted
what is it? i sorry if this sounds like a crazy post but i posted a few times about finding ticks on me and displaying all the symptoms of lyme, both tests are negative and now i'm frightened to know what it is i have. i wanted it to be lyme (crazy i know) but it's so early on i thought treatment would be effective. i suffered from vertigo, eye problems, stiff neck, walking sideways and most recently weak right shoulder and neck pain. vertigo and eye problems have gone away. my neurologist does not think it's ms, definately not als, my symptoms are so transient. now i'm faced with a mri of head and c-spine with contrast on tuesday and am scared to death what it is. my neck is now tense, my shoulder weak and i still feel like i'm walking sideways. but i'm in no pain, just high anxiety. i'm really afraid there's some disease of my spinal cord, god, cancer or chiari malformation, i've spent way too much time on the internet and just want to feel right. thank you everyone for your support these past few weeks and i hope you all are on the road to recovery and being diagnosed properly. send good vibes my way this week as i'm deathly afraid of doctors, mri's and awful results....... karen
Posts: 68 | From uxbridge, mass | Registered: Jul 2006
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Don't know which lab did your Lyme tests, but even if it was IGeneX or MDL and it was negative -- A NEGATIVE TEST DOES NOT RULE OUT LYME.
Go ahead and get the MRI's done to rule out other things, but if I was a betting person I would still bet that you have Lyme. Many people on this board, including hubby, have negative tests. The tests just are not that good. There are many many reasons why you could have a negative test. I am sure someone else will come along and give you that link.
Keep us advised and we will help you figure this out.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Go back and read your previous posts and the answers you got. It seems to me you have not taken this advice to heart yet and are still putting too much faith in testing and in the medical establishment which is currently making a big botch of tickborne diseases.
You have medical training. Use it and be your own advocate. If your current doc is diagnosing on the basis of a test alone, it is time to move on. There are very few good lyme docs, so you might have to travel.
If this is an early lyme case and you do not jump on this big time now, you will end up chronic, broke, and we will have you as a longtime member of this forum.
Don't know how to be plainer. Here is a recent medical journal which says lyme is a clinical diagnosis:
This took the researchers five years to get around to publishing it, which shows just how negligent a major medical institution can be, in this case Johns Hopkins. They might have finally admitted testing is not reliable, but are still doing a poor job of treatment, as are all other major medical facilities. Doesn't make sense, I know. But that is how it is. When all these facilities are in lock step with a treatment, and it is wrong, big trouble for patients. Now you know why support groups and internet websites are needed for lyme patients.
Posts: 8430 | From Not available | Registered: Oct 2000
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Negative tests unfortunately don't mean much at all. It is a clinical diagnosis also, the doctor SHOULD know better, but 99% of the time, they don't; they rely on test results alone which are highly unreliable.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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The only defense against medical ignorance of tickborne diseases is to educate yourself.
Oh yes, and get hold of the lyme books by Karen Forschner and Denise Lang. Either buy or get from local library.
There's a window of opportunity with lyme treatment, at the early stage. Don't miss it.
Posts: 8430 | From Not available | Registered: Oct 2000
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Carol B
Unregistered
posted
I've had both and MRI of the head and the spine-for me they were no big deal- mostly because there was no pain involved in the testing.
Just lots of loud banging, you'll get ear plugs, and the tunnel was chilly-second time i took socks and a sweatshirt to keep warm- you can also ask for a blanket.
They put a metal grid over your head for that particular MRI. Just trying to give you tips on what to expect. I said NO Way Hosay to a spinal tap though.
Guess you are not being treated by an LLMD, or you would know that a negative lyme test means diddlysquat when there are so many clinical symptoms.
I got truly discouraged during the two years I was being sent from one specialist to another-knowing there was something terribly wrong, but not getting any acurate diagnosis-until I went to an LLMD.
Good Luck, Don't give up hope-Follow your intuition and arm yourself with information. Carol
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Firepipersnurse. :-)
Much as we want to help, it seems as if you've been posting your situation, then everyone pitches in with their thoughts or suggestions, after which you don't return to the thread or acknowledge whether you're going to take any of the suggestions, then you start a new thread saying essentially almost the same thing.
Is there a possibility that you "lost" the other threads?
If that's the case, push the "reply" button at the bottom of your screen and tell us, and we'll hunt 'em down! The screens do go flying by on lymenet fast!
I am pretty sure I remember showing you an article demonstrating how the tests that YOU had for lyme are, well, worthless. Where an actual patient with proven lyme disease sent his blood to a buncha labs and about half of them said, "Nope, no lyme here!!"
So if you're going through ALL the trouble of a spinal tap, MRI, and all that jazz, is there one single reason you won't order a good western blot from IGeneX? The results are likely to be VASTLY different! Most of us here are proof of that!
Some people are intimidated by their doctors, especially if their doctors have told them in no uncertain terms they DON'T have lyme. If that's the case, tell your doctor you still suspect that you DO, so could he please HUMOR you and sign the IGeneX form for you, pretty please? Please do at least that if you can't get to an LLMD immediately, which is what you really need to do when you've been bitten by a tick and exhibiting the symptoms you have.
And please try not to worry about all the other things you've imagined. Mosta the time, people with lyme have normal MRI's and spinal taps. Chances are excellent that you will, too! The only thing that WON'T be normal is your checkbook!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi firepipernurse
((((Sending you some good vibes ))))
here's some links. You can still have lyme & test negative.
posted
Piper....YOu can locate those old posts by doing a search here or by going to the bottom of this page and clicking on Page 2, page 3, etc until you find it.
Please listen to Michelle!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Here is an easy way to read all your previous posts.
At the top of this thread on the same line as your screen name -- click on the box with the ? in it -- this brings up your LymeNet profile.
Click on view recent posts -- this brings up the list of all 9 of your posts -- can click on any of them to read.
------------------------------------------------ What you need to understand is that very few neurologists know much about Lyme. Hubby saw 14 neurologists -- 13 of them all diagnosed him with anxiety/depression or pseudo-seizures etc. Several of them would not even believe his positive Lyme PCR test.
The same is true for PCP's -- many know next to nothing about Lyme. Please try to schedule an appointment with an LLMD -- your symptoms are not going to go away or improve on their own if you have Lyme and coinfections.
You said you found some ticks on you. Hubby was not so lucky. We had no idea what was causing his Parkinsonian tremors as we had never met anyone with Lyme disease in our community before. It took 1 1/2 years to get a diagnosis and we saw around 30 docs. He has been in treatment for over 3 1/2 years now and has seen another 35 docs trying to get help.
I am not trying to scare you. I just think you need to stop believing in docs who do not know anything about Lyme and tickborne diseases -- why not ask your neurologist how many Lyme patients he/she has seen? I would bet the answer will be just a few. Many LLMD's have treated thousands of patients. Experience makes a big difference.
Good luck.
Bea Seibert
P.S. I don't want you to end up in the psych ward. Hubby was there 3 times and it was no fun. Came out sicker than when he went in. Once Lyme goes to your brain it can cause all sorts of crazy unbelievable symptoms.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Are you there, nurse? We can't tell if you come back and read replies or not. Please respond so we will know. After a while people give up on newbies who don't appear to be reading their replies. We are worried about you.
Posts: 8430 | From Not available | Registered: Oct 2000
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Maybe she has more neuro symptoms than she realizes!
At my worst, I couldn't even get on here.
Posts: 1572 | From Pa | Registered: Jun 2001
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posted
hi everyone, thanks for all the response, i did figure out how to find replys to my post, little distracted lately. really freaked out about what they're going to find. sometimes i feel like i'm imagining my symptoms. i feel weak in one arm yet can type and lift a chair with it....my symptoms come and go. today i'm off to an mri of head and neck, i'm armed with ativan to help keep the edge off. send good thoughts my way and that i don't hit that panic button and make a total fool of myself and have to repeat this whole thing again.
thanks again for the replies and direction how to find them, it's definately a neurological thing....lol karen
Posts: 68 | From uxbridge, mass | Registered: Jul 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Nurse. I KNEW we hadn't lost ya!
I'm glad you're having the MRI as it will likely produce great peace of mind for you. I had really bad headaches before diagnosis and halfway convinced myself I must have a brain tumour, because they were SO unresponsive to any medication. So in a way it was a great relief to find out I DIDN'T have a brain tumour.
The MRI is a cake-walk. 'Specially with some Ativan! Have someone drive you, though -- Ativan can zone you out pretty well! The worst you might experience is some banging and clanging and knocking as the machine does its thing..just ignore it and think tranquil thoughts.
You'll likely not hear anything today of your results but please keep a positive outlook -- they actually read these things right away and if you had something very concerning, you'd be hearing about it fast. I'm figgering your MRI will be just fine -- it's just lyme messing with you. Don't let your "Duck" (doctor) convince you that a normal MRI rules out lyme in the way he's already tried to convince you that his crappy negative labs have ruled it out.
Keep thinking about that LLMD appointment and those IGeneX tests. THAT is what is going to get you some answers.
And PLEASE don't disappear in cyberspace on us -- we get attached to our new people on accounta we used to be new people too!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I agree. Pursue it. Get the IGeneX tests.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
One thing that is not often discussed here is treatment as a diagnostic tool. Because Lyme & Co-ins are so difficult to get accurate test results on, and because many people respond positively very quickly on abx & other drugs, should this not be one avenue in the proccess of testing?
I fully realize that this is not the normal medical approach, but then this is not your ordinary ailment.
Though I never tested positive for Lyme, even at Igenex, my Lyme-like symptoms responded very quickly(within 2 weeks I was almost symptom-free) to abx.
After all, we are not talking about Morphin or OxyContin here. Abx is relatively safe for a test, not addictive and a lot less expensive and invasive than other options.
Of course, it is good to rule things out, but in the meantime a course of abx,depending on the types of testing being done, could be givien along-side these other test.
Just a thought....
Posts: 175 | From ma. | Registered: Aug 2005
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
hve not read all the responses but thought this may ne approprriate. Since they are trying to find out what's is wrong I just thought I'd mention this in case the wanted to "try" some treatment.
DO NOT TAKE STEROIDS!!!!!!!!!! If this is lyme (and well you know what I think) the steroids can really be extrmemely harmful and make your recovery 8 zillion times more difficult (yes, even a short course).
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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posted
well i survived the mri, thank you ativan.....they had to take pictures a few times because i kept moving, didn't feel like i was but i did so i was there for an hour and of course nobody tells you anything there and i tried to read their faces but couldn't quite analyze that. thank god. i have a appoint on monday with neurologist and hoping i don't hear from her beforehand. no news is good news in my book. my asthma symptoms have been acting up lately, although i do smoke (i know a nurse that smokes) but never had problems with asthma since i was a teenager. if it wasn't for my experience after 5 days on zpac, i wouldn't keep thinking lyme. but that evening i felt like i was possessed by some type of poltergeist and nothing made sense, people's bodies do not just vibrate and jerk spasmodically nor does your heart feel like it's being squeezed and your back and head catch on fire. that's the only thing that really has me continuing to wonder. although i found two ticks on me, i don't know if they bit me, they were black ticks but not dog ones and i did scrape a poppy seed black mole off me (which i thought afterwards god, never thought i could pick a mole off, hope it's not melanoma).....so now i sit and wait and hope the damm phone dosen't ring since i'm on edge right now knowing that people have a picture of my head and neck......scarey
firepiper
Posts: 68 | From uxbridge, mass | Registered: Jul 2006
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You are right -- you can't scrape off a mole. That was probably a deer tick. Have seen this exact dsecription from LLMD's before. The nymph (baby tick) is about the size of the period at the end of this sentence.
Keep reading and keep an open mind regarding the possibility of Lyme and tickborne diseases.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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