posted
I am not sure if I am doing this correctly or not. My husband recommended this site to me and I have been researching Lyme Disease constantly on the internet.
I have been sick for about 3 months now. Approximately 4 years ago, I tested positive for Lyme. I had unbearable headaches and flu like symptoms. After antibiotics, I felt much better. Of course I had a whole series of tests before they tested me for Lyme. Of course I had a whole series of tests before they tested me for Lyme.
A couple years ago I developed Bells palsy and was told I had had a relapse, it eventually went away.
This time, I started with flu like symptoms, chest pains, and then facial numbness. Five weeks ago it got worse...extreme fatigue, chills, stiff neck, facial numbness again, insomnia, muscle wekaness, joint pain, jaw pain, facial pain, ear aches, lightheaded and dizziness, I feel like I am in a fog, and unbearable headaches.
skin tightness...etc... I also forgot to mention in my last post that my skin feels like it is on fire/burning sensations...
I have had cat scans, mri's, ekg's, you name it, the lyme test came back negative..and my Dr. swears it cannot be lyme because the test is very thorough and was negative...
I have bounced from specialist to specialist, told I have acid reflux, told I have fibromyalgia, now I have been told I have depression and that the depression is causing these symptoms...
Of course who would not be depressed I say?
before this I was a perfectly normal, strong healthy individual, with a great job as a Paralegal... I find it hard to belive this is all in my head...
I need help, I need support and I need a doctor who will listen to me and take me seriously, I have tried to ask my doctor for an antibiotic and have since switched doctors and they even feel the same way, regardles of my symtpoms, they rely on the lyme western blot test and that is that.
Yet all the medications I am on, pain for my head, muscle relaxers, anti-inflammatories, anti-depressants...nothing is making me feel better...
Please advise and offer any words of advice, and point me in the direction of someone who can help me...
Thank you in advance, Sarah C.
[ 09. September 2006, 09:14 PM: Message edited by: SarahC ]
Posts: 34 | From New Milford, Connecticut | Registered: Sep 2006
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bettyg
Unregistered
posted
WELCOME SARAH! Your hubby directed you to the right place!
Go to SEEKING DRS. and post there showing what STATE you want in your topic line ok.
You can just copy your post here & paste there but please break up your sentences for easier reading from us neuro lymies so we can comprehend.
In fact, you can edit this post. Click on the PENCIL and then break up your sentences leaving one blank line between each paragraph. We so appreciate that Sarah.
I'm sending you a PM, private message, now of 16 pages of newbie links/advise ok! Look for it in your HOME INBOX.
Creative a file for it and other pms; explained in my advise to you ok.
Delete the PM HERE on the board since you have it in your home file. You are limited to 60 notes here; they fill up fast!
FYI, you should post these in only one board. This deals with MEDICAL; so it goes here; not also in the general support just so know for another time ok.
If no one has responded to general post, you can delete it there or copy the reply to THIS post.
To delete the duplicate post, go to general and click on your post there.
Go to the top where it says DELETE POST and click on there. SEND, and it's completely off the board now.
I'll send the PM now before I forget...lyme brain! Bettyg Bettyg
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You were wise to post here. Smart husband also.You had a positive lyme test once and were treated for it. It is very difficult to completely eradicate lyme, many people go into remission where they have few or no symptoms and the bacterial counts are low. But they can flare up in the future.
Testing for lyme is inadequate. In the newbie links you can read more about teting. Even with a good laboratory, such as Igenex, there are too many false negatives to rely on the tests for diagnosis. Lyme is a clinical diagnosis. You need a lyme literate doctor to listen to you and your history, and take this seriously.
I was told that I had depression, chronic fatigue, fibromylgia, the whole lot of diseases with no clear cause and treatment. I too was frustrated and knew something was wrong with me and having no one take me seriously. Too many of us here unfortunatley can empathize with your situation.
In your case it seems fairly clear. You have had a extensive work up that revealed nothing. You had lyme. Lyme can recurr. Your current symptoms are consistant with lyme disease.
If you haven't already, go over to the seeking doctors section and place a post. Indicate where you are located...and make sure that under your profile the pm service is activated so that members can send you private messages about doctors.
Take care.
Posts: 628 | From the south | Registered: Dec 2005
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Have you been tested for co-infections?
Posts: 1603 | From ny | Registered: Aug 2006
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posted
No I have not, my doctors all think I do not have lyme because the western blot was negative.
Posts: 34 | From New Milford, Connecticut | Registered: Sep 2006
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quote:Originally posted by SarahC: No I have not, my doctors all think I do not have lyme because the western blot was negative.
Show's how much they know!! I hope you will get your next WB through Igenex. That should tell you and your new LLMD what is going on!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
HI Sarah
do you know what lab you where tested at?
Most of the tests are iffy at best. Lyme disease is a clinical diagnosis. There are many reasons why you can still have lyme and test negative for it. Here is a link that explains why:
I would highly reccomend you try to find a lyme literate doctor and get tested thru igenex there webb site is www.igenex.com
Its really important to find a doctor who knows alot about lyme- a lyme literate . Lyme disease and the co-infections that come along with it can be very difficult to treat.
good luck to you and hope you can feel better soon
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Sarah
Like others have said the testing that is now avaiable is Very Poor at best--
To many things can sque the results--
False positives are very rare tho--
Lyme and coinfections are DX by symptoms only- because the tests are so poor-
Most folks have co infections also-- you get several type of germs from one tick bite--
You came to the best site for getting help- Read the newbe pages --Dr Bs info is a good place to start--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
It always amazes me when I see someone post from Conecticutt that they have idiots for doctors who don't know about lyme disease...
This in itself tells us that it is not ignorance of the disease...cuz ducks in Conecticutt CAN'T possibly be ignorant of the disease...
IT's political......and should be prosecutable like they do to OUR LLMD's.
Also tell these moronic ducks that the helicobactor pylori test they gave you and got a positive result is because H-Pylori and lyme are somehow cross-referenced bacillus......
I still come up pos for H-pylori years after taking the 14day abx cure...and am asymptomatic for h-pylori...but still show positive for lyme...IGG and IGM.
If you tested positive for lyme...get a copy of that test from the duck that diagnosed you and treated you.
Chances are you were not treated with the correct antibiotics...strong enough or long enough. My initial oral abx after being sick for about four years was six months of doxy and ammoxycillin.
Felt good except for three days a month....the dumb ducks took me off the treatments and I relapsed in a month and a half....
Your relapse seems to have taken longer... Or living in Conn you may have been re-bitten without your noticing...
Either way...sounds like you're sick with lyme disease and possible co-infections.
Sorry...
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Wow, yours is the most blatant case of Lyme based on symptoms I have read in a long time.
The doc who swears the Lyme test is accurate is a jerk, and I put that mildly. New Milford is huge for Lyme. I pulled a tick off my daughter there 20 years ago, my boss got Bell's palsy from Lyme there about the same time, and Michael J. Fox caught Lyme there while making his movie. (Makes me wonder if his Parkinson's might be chronic Lyme.)
I will PM you the info for Dr. P. He lives near you.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I'm with Shaz. You couldn't ask for a more textbook description of Lyme! Welcome, and glad your hubby pointed you here!
Chances are good that the labs your idiot doctors used are labs that don't even LOOK at the most important and lyme-specific bands on the western blot. They IGNORE those bands on the pretense that you might have been vaccinated with the lyme vaccine and therefore have a positive on those bands.
And unless you use a really GOOD lab like IGeneX, here's what can happen:
"In one serious test of the Lyme Western Blot testers, there was a stunning finding. They used nine clearly infected patients and sent their blood to 18 labs. Of the IgG type of antibody, some labs were wrong. They missed 10 of 18 samples. For the IgM type of antibody, the labs were occasionally so bad they falsely reported Lyme as absent in 16 of 18 samples (Arch Intern Med 150:761-763, 1990)."
Pretty cool, huh? Makes you really wanna send your blood there right away!
Which brings us back to the real point, which is: These idjits cannot accept that lyme is a clinical diagnosis. You already HAD laboratory confirmed lyme. You have it again. You need treatment.
Please find an LLMD and leave these ducks in the dirt.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Thank you everyone for your responses and advice! I cannot wait until Monday to call an LLMD. You have helped me to confirm what I have thought all along, only to be told NO this is not Lyme! Hopefully the wait is not too long.
Posts: 34 | From New Milford, Connecticut | Registered: Sep 2006
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posted
The one test I had that finally showed the docs it was not all in my head (well, it actually is) was a BRAIN SPECT SCAN!
As soon as the results came back, the docs, my family, and the insurance company all saw that lyme had affected my brain! It was right there in picture form.
The report didn't say I had lyme, it said the scan indicted lyme disease. But it was enough to validate everything that I had been going through for 14 years. It got me the IV I need to get better.
Posts: 867 | From PA | Registered: Jan 2006
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