posted
I have been diagnosed with fibromyalgia. I have symptoms of lymes but they are very similar to fibro.Traditional testing with regular doctors say all my blood work is perfect. For the 7 years Ive been sick I have had perfect bloodwork across the board. My syptoms are chronic headaches/migraines, IBS,insomnia, hypoglycemia, anxiety/panic disorder, at time I suffer with full body muscle and joint pain. I was bit by a tick 7 years ago when this started, never got a rash and was immediately put on a weeks worth of doxycycline.Now I have a first time appointment with Dr. E this week. What if all my tests with her are negative .Isnt it safe to assume at that point that lymes is out? Or do any of you have been negative but benefited from antibiotics. My whole concern is long term antibiotics and its side effects and Im wondering if I should only consider that option if Im positive in bloodwork. Any advice?
Posts: 5 | From TOMS RIVER, NEW JERSEY | Registered: Jan 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Testing for lyme disease is not a test that shows the lyme bacteria itself. The test is looking for antibodies that your body should be producing to fight off this powerful infection. Not showing positive is scary because that means your body is not acknowedging the bad guys invading your body.
Lyme disease is a clinical diagnosis. Bloodwork should only be used to support the dx. Treatment should be based on the symptoms, not the bloodwork.
A good percentage of people with long time chronic lyme disease have never tested positive. That is not a good thing. If your body doesn't recognize the enemy, that's not good.
Fibro is a symptom, not a disease. Fibro is caused by some unknown factor. Tick or vector borne illnesses will cause you to have symptoms that some docs (ducks) will call fibro.
You have to get at the root cause of your illness to heal. Telling you you've fibro is not good enough.
May your visit with the next doctor be the beginning of you getting your life and health back.
Take care, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6481 | From Louisville, Ky | Registered: Jan 2002
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posted
Many people test negative many, many times. I did. Only after nine months when I finally had no choice but to go to a Lyme Literate Medical Doctor....only then did I start to see IMMEDIATE relief. A year and a half later I am about 95%. So please believe that you shouldn't feel like this....you don't have to....and if you stay strong and go with a good LLMD you WILL get better, over time.
-------------------- Thanks, Rick Posts: 136 | From Poughkeepsie, New York | Registered: Jul 2004
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
You said, "What if all my tests with her are negative?"
Umm....aren't you jumping the gun here? Let's see how the appointment goes. You sound really anxious, which is understandable.
Because the tests are not reliable, Lyme Disease is a clinical diagnosis. That is, the doctor looks at the patient's history and the symptoms, and bases the diagnosis on that. NOT on the results of the lab tests.
You said, "My whole concern is long term antibiotics and its side effects..." Well, yes, antibiotics can cause some problems when taken long term. They can cause gut problems, allergic reactions, and can depress the immune system. But...some people tolerate them well, and their Lyme symptoms go into remission.
If you are interested in alternative treatments, there is alot of information available.
There are two books that I'd recommend. "Lyme and Rife" by Bryan Rosner "Healing Lyme" by Stephen Buhner
Wishing you the best, Carol
Posts: 6949 | From Lancaster, PA | Registered: Feb 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I seriously doubt all your tests with her are going to be negative, from looking at your list of symptoms.
Also, you recall being bitten by a tick.
You're from an extremely endemic area.
What's more, around 25% of culture-proven Lyme cases are seronegative. What that means is they scrape a little piece off around the EM rash, culture it, and find the bacteria. Then test the blood. Voila -- NOTHING!!! So stop stressing over "the tests." A pox on the tests!
And if all of THAT isn't enough, consider this: Many people who are "seronegative" will do what's called "seroconvert" -- that is, after a short period on antibiotics, they will begin producing detectable levels of antibodies and suddenly starting testing positive.
Another great diagnostic tool is how lousy you may find yourself feeling when you start on antibiotics - experiencing a Herxheimer reaction is diagnostic for Lyme and isn't suffered by people without Lyme.
So go see your new LLMD with confidence. I think you are going to feel much better soon!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bettyg
Unregistered
posted
Welcome Burns to our 24/7 support and educational site. I'm going to break up your long paragraph for us neuro lymies who can read only 6-8 lines of text and DOUBLE space between them. Can't comprehend/read as is ok.
quote:Originally posted by A.BURNS: I have been diagnosed with fibromyalgia. I have symptoms of lyme but they are very similar to fibro. Traditional testing with regular doctors say all my blood work is perfect.
For the 7 years Ive been sick, I have had perfect bloodwork across the board.
My syptoms are:
chronic headaches/migraines, IBS, insomnia, hypoglycemia, anxiety/panic disorder, at time I suffer with full body muscle and joint pain.
I was bit by a tick 7 years ago when this started, never got a rash and was immediately put on a weeks worth of doxycycline.
Now I have a first time appointment with Dr. E this week.
What if all my tests with her are negative? Isnt it safe to assume at that point that lyme is out?
Or do any of you have been negative but benefited from antibiotics.
My whole concern is long term antibiotics and its side effects, and Im wondering if I should only consider that option if Im positive in bloodwork. Any advice? [/QB]
With all your symptoms of lyme, it's to your benefit to be prepared for a chronic lyme diagnosis. FYI, it's lyme not lymes disease & all drs. are guilty of this.
We all have fibromyalgia pain; I never knew that lyme folks do too. But 300 OTHER illnesses mimic lyme disease including most of what you posted above. That's why it takes so long for the right diagnosis.
I'll copy/paste basic info here including having western blot igm/igg tests done at: IGENEX, MDLABS, OR BOWEN.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's 2005 info first; you will come back to this often.
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
TESTING FOR LYME DISEASE ... 3 main LYME TICK BORNE LABS IN USA!
The WESTERN BLOT IGM & IGG blood test nos. 189 and 188, are the only accurate tests for LD. They should only be sent to these 3 USA's Lyme testing labs:
IGENEX LAB: 797 San Antonio Road Palo Alto, CA 94303 1.800.832.3200.
(If the early test, called IGM, is negative; the later test IGG is NOT done!) Please see their web site: www.igenex.com CALL for their current prices effective OCT. , 2005 and
to print their REQUIRED form, which MUST be signed by the doctor, DIAGNOSIS CODE NO. COMPLETED!; Medicare's UPIN no., and your blood taken EARLY in the week so it doesn't sit in post offices! Example, have it taken Mon. - Wed. Afternoon tests show more positive lyme results!
Here is the site to PRINT THEIR REQUIRED FORM to send with blood sample. For me, I printed the FIRST option available on the forms.
Write on their forms you want results FAXED to their drs. Office; snail mail paper copy so it's not lost like mine was!
NON-Medicare patients must PREPAY by check or credit card for the tests since they do NOT handle insurance papers. Medicare patients do NOT have to prepay!
2. MDLabs from NJ, www.mdl.net see their site; they too require their own form. NO prices are listed; you must call their 800 no.
3. BOWEN labs from Florida, www.bowen.net 727.937.9077 You pay $250 tax-deductible payment for testing, and they send you a picture of what shows up in your blood. You also get the results within 24 hours after the blood is received at Bowen. They are also a 501(c)(3) lab and you can take the donation of $250 off of your taxes if you live in the US. They fax the results and then about a week later send the actual pictures. Lyme should be diagnosed clinically using medical history in addition with the Western Blot blood tests as no currently available test is definitive in ruling-in or ruling-out infection with Ld pathogens, or whether these infections are responsible for the patient's symptoms.
NOTE: Please send a copy of your health insurance card to YOUR insurance comany (mine is Wellmark BC/BS, Iowa) for them to submit to BLUE CARD (handles other states) them to FORWARD to California's Blue Shield health insurance company since they will require that, DRS. Diagnosis Code No., and which date of service is correct (IGX has 3 different dates on their paid receipts....use the DATE OF ACTIVITY!).
FYI - mine was returned to me after 6 wks. After submitting; dr./blood lab failed to show DRS. DIAGNOSIS CODE NO. on their form! It went to 7 people to be returned to me! Disgusting!
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posted
I VE POSTED ANOTHER QUESTION ALONG WITH THIS ONE AND EVERYONES WANTING TO KNOW WHERE I AM! THIS IS THE DEAL GUYS, I DONT THINK I HAVE LYMES. I JUST DONT HAVE ALL THE SYMPTOMS. THE REASON IM GOING IS BECAUSE I KNOW DR. E USES THE LABORATORY THAT HAS MORE SENSITIVE TESTING TO BACK UP ANY OTHER TESTING IVE HAD ALREADY. THATS WHY IM CAUGHT UP ON THE "POSITIVE TEST RESULTS". IF I GOT LYMES 7 YEARS AGO WHEN I WAS BIT BY A TICK HOW IS IT POSSIBLE THAT MY SYMPTOMS HAVE REMAINED THE SAME FOR 7 YEARS WITHOUT DECLINING? IF I HAD BACTERIA RUNNING A MUCK IN MY BODY FOR 7 YEARS I WOULD BE HOSPITALIZED AT THIS POINT. AND THATS ADVICE COMING FROM MY MOTHER WHO HAS HAD LYMES FOR THE LAST 15 YEARS AND IS A R.N. IM NOT WILLING TO START THERAPY IF MY TESTS ARE NEGATIVE. I DONT FEEL I HAVE ENOUGH "CLINICAL PROOF" TO DIAGNOSE LYMES WITHOUT THE BACKUP OF POSITIVE TESTS. IN A NUTSHELL, IM BASICALLY GOING FOR DR. E'S LABS. IM LOOKING TO PUT MY MIND AT EASE AND ADD ADDITIONAL TESTS TO MY ALREDAY PERFECT BLOOD PROFILE. IF THE TESTS ARE NEGATIVE, I BELIEVE I DONT HAVE LYMES. IF THEY ARE POSITIVE THEN I BELEIVE I DO. IM A PATIENT OF ONE OF THE TOP RECOMMENDED RHEAUMATOLOGISTS IN MY AREA WHO IS ALSO USED BY LYME NET AS A SOURCE OF GOOD ADVICE ON LYME DISEASE AND HE FEELS IT IS NOT LYMES. MY DAUGHTER HAS LUPUS AND MY MOTHER HAS LUPUS. IM NOT "POSITIVE" FOR LUPUS YET. IM STILL ONLY IN MY 20'S AND DOCTORS BELIEVE I CAN BE IN A PRE-LUPUS STAGE AS LUPUS CAN DEVELOP OUT OF THE BLUE INTO YOUR THIRTIES. ME GETTING CONFIRMATION OF LYMES OR NOT THROUGH A GOOD LLMD WILL HELP ME PUT A PROFILE TOGETHER IF IM A POTENTIAL LUPUS PATIENT.
Posts: 5 | From TOMS RIVER, NEW JERSEY | Registered: Jan 2006
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
quote:Originally posted by A.BURNS:
I I JUST DONT HAVE ALL THE SYMPTOMS.
Maybe you don't have Lyme, that's possible. But, even if you did, it is not a requirement to have all the symptoms. You may have only one or two.
THE REASON IM GOING IS BECAUSE I KNOW DR. E USES THE LABORATORY THAT HAS MORE SENSITIVE TESTING TO BACK UP ANY OTHER TESTING IVE HAD ALREADY.
As you may know, tests are not supposed (according to CDC) to be used alone to diagnose, or not, Lyme. What lab are you speaking of? What kind of test?
IF I GOT LYMES 7 YEARS AGO WHEN I WAS BIT BY A TICK HOW IS IT POSSIBLE THAT MY SYMPTOMS HAVE REMAINED THE SAME FOR 7 YEARS WITHOUT DECLINING?
Your immune system could well have been keeping the spirochetes in check. An additional bite can tip that balance.
IF I HAD BACTERIA RUNNING A MUCK IN MY BODY FOR 7 YEARS I WOULD BE HOSPITALIZED AT THIS POINT.
No you would not necessarily. I had it 'running a muck' in my body for 15 years before getting correctly diagnosed. I was not on my deathbed even by then and was not in the hospital.
AND THATS ADVICE COMING FROM MY MOTHER WHO HAS HAD LYMES FOR THE LAST 15 YEARS AND IS A R.N. IM NOT WILLING TO START THERAPY IF MY TESTS ARE NEGATIVE.
That is understandable. But, remember that the test is not definitive and that they can miss up to 2/3's of positives when Lyme is chronic. Any doctor who says it is a definitive test, is misleading you. In fact, about 80% of medicine is practiced in 'the grey zone'.
I DONT FEEL I HAVE ENOUGH "CLINICAL PROOF" TO DIAGNOSE LYMES WITHOUT THE BACKUP OF POSITIVE TESTS.
I hope that is your case. (that you don't have it).
IN A NUTSHELL, IM BASICALLY GOING FOR DR. E'S LABS. IM LOOKING TO PUT MY MIND AT EASE AND ADD ADDITIONAL TESTS TO MY ALREDAY PERFECT BLOOD PROFILE. IF THE TESTS ARE NEGATIVE, I BELIEVE I DONT HAVE LYMES. IF THEY ARE POSITIVE THEN I BELEIVE I DO.
IM A PATIENT OF ONE OF THE TOP RECOMMENDED RHEAUMATOLOGISTS IN MY AREA WHO IS ALSO USED BY LYME NET AS A SOURCE OF GOOD ADVICE ON LYME DISEASE AND HE FEELS IT IS NOT LYMES.
If he's 'used by Lymenet' for good advice, can you share who this Doc is?
MY DAUGHTER HAS LUPUS AND MY MOTHER HAS LUPUS. IM NOT "POSITIVE" FOR LUPUS YET. IM STILL ONLY IN MY 20'S AND DOCTORS BELIEVE I CAN BE IN A PRE-LUPUS STAGE AS LUPUS CAN DEVELOP OUT OF THE BLUE INTO YOUR THIRTIES. ME GETTING CONFIRMATION OF LYMES OR NOT THROUGH A GOOD LLMD WILL HELP ME PUT A PROFILE TOGETHER IF IM A POTENTIAL LUPUS PATIENT.
Yes, and SOMETIMES Lupus is also a case of missed Lyme and not Lupus. Wouldn't it be great if things were more black and white in medicine in general.
Good luck. DLL P.S. are you aware that typing in all CAPS is considered shouting?
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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The symptoms can remain for much longer than 7 years without causing hospitalization. There are 6 genotypes and over 300 strains of Lyme. The exact same strain of Lyme in one person can cause very different symptoms in another. One person may become confined to a wheelchair while the other person is only exhibiting minor fatigue, muscle and joint pain, etc. that could be construed as normal (I have always had this) or old age or stress.
Someone mentioned reinfection by another bite. That is what I believed happened I had very minor symptoms for years after living in some hot Lyme zones. I think my immune system was doing a good job holding the Lyme at bay. A few years ago after a camping trip I got hit hard classic Lyme symptoms in stage order. I did see a tick in my car after the trip, but never really thought how serious Lyme was or put two and two together because there was no bullseye.
I am not saying you do have Lyme, but I have had negative antibody testing (WB), but positive antigen testing LUAT and PCR. I hope the lab you are going to does both. Because some of the long term chronic Lyme patients aren't making antibodies anymore, they are usually the ones that test positive by DNA testing. Actually a year into treatment I did test positive on the WB but not by CDC standards.
If I were you I would investigate the LYme diagnosis much more than the LUpus. Lyme is the 2nd highest infectious disease in the US. Actually if they use the underreported cases it is more than likely the most common infectious disease. Lupus is much less likely it is not nearly as common. Many people are diagnosised with Lupus later to find out it was Lyme. INcluding a good friend of mines' little sister. Lupus is a last resort diagnosis after all the other tests have been exhausted.
Posts: 649 | From United States | Registered: Dec 2003
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Well A Burns, if you don't have lyme then why are seeking help on a lyme support group?
Your posts are sending red flags all over the place with many in this forum that have seen your story over and over again. You or your doctor have decided to call it fibro. So what's the treatment?
Your daughter and your mother have lupus???? And you are looking for a lupus diagnosis? Do you know that lupus is caused by unknown factor? Did you know that lupus is a list of sx that ducks have labeled lupus.
I don't understand what you want from this group and why you feel you need to scream at us that you don't have lyme.
To think you were bite by a tick 7 yrs ago and took abx for a week and now it's gone, and you don't have lyme is the most closed minded statement I have ever read.
Nobody in this forum has every symptom of lyme disease. Some have MS sx, some lupus sx, some dementia sx. And you wouldn't necessarily be dead if you carried lyme around for the last 7 years.
You would just be ill and looking on the internet for answers to your illness, because apparently the doctors have been on no value to you so far.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6481 | From Louisville, Ky | Registered: Jan 2002
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posted
I had undiagnosed Lyme for at least 45 yrs, taught school for 21 yrs during that time. I was in and out of the hospital with this problem and that problem.
NO DOCTOR ever thought to look for Lyme. I was dxd with everything else in the book.
Now I have damage that is permanent. Is that what you are willing to settle for??
Please lose the CAPS. Thanks.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
Burns, yes, please do NOT use ALL CAPS! ---------------------------------------
Also use SHORT paragraphs of 6-8 lines and DOUBLE space in between.
You can edit your post anytime...title & text using the PENCIL icon. Thank you for using our lyme protocal here.
posted
Oh yeah I have had Lyme for years and I can't remember the last time I didn't have perfect bloodwork. Lyme rarely effects the CBC if that is what you are refering to.
I do remember the last time my CBC wasn't perfect. It was the time I went to the ER thinking I was having a stroke my sed rate was elevated slightly. That was almost 3 years ago and ever since no problems on my CBC.
You can't go by a simple blood test to determine Lyme. If it was that easy why are there very expensive specialized tests to detect Lyme? They don't call it a stealth pathogen for nothing.
Posts: 649 | From United States | Registered: Dec 2003
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You can't go by a simple blood test to determine Lyme.
Exactly. Burns....You asked about if any of us had come up seronegative. I did. My immune system was so severely suppressed that it had trouble registering a response to the Western Blot.
Your body has to be able to form antibodies in order for the test to be positive. Mine couldn't since an idiot rheumatologist gave me steroids and methotrexate for my "fibromyalgia."
However, my test showed more bands reacting after I took antibiotics for 3 weeks, then stopped for 2 wks, then tested again. I was one band shy of being CDC positive.
It's all kinda stupid anyway. If you have ONE band specific for Lyme, then you have it. To NOT be treated, means you'll have a lifetime of misery.
Why not get TREATED and see what happens. Don't you WANT to be relieved of your pain and fatigue??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
I left my first appointment with your attitude...I waited 2 weeks with my prescriptions in hand...ready, waiting for that test.
My LLMD told me to go directly to the pharmacy around the corner, get them and start...however, I waited....like you.
Thinking I knew better...of course I had ALL of the classical signs of Lyme...just like you...I was also told that they were FMS (fibro) by other Doc's....and psychiatric help was the best for me....sheez...was I an idiot or what?
When the tests came back postive...WAY positive I went for it....my life didn't improve dramatically...but I did SLOWLY get better...S-L-O-W-L-Y.
The herxheimers were tolerable.....and I lived...better each day.
If, in the ned you opt for Fibro...that is your choice....I am not a Doctor...but, I will say...more Docotr's tell me that Fibro is dead end...more so than Lyme.
Trout
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
Hey Dude,
My blood tests are perfect...in fact I have wonderful blood pressure, great MRI's, terrific musculo-skeletal form and fit (per my MD and Chiro since forcing myself to start weight lifting again.)
I have passed a billion stress tests...nerve conduction rests negative...and I have weird symptoms..just like the ones you posted originally.
Funny thing is..I have lyme.
Also, My wife is a nurse...in fact she was head of a national training department for the Air Force...talk about knowledge...our daughters also had/have Lyme.
And guess what.....I was TOLD Lupus when I was 28 years old also.
Hmmmmmmmmmmmmmmmmmm
Seeing a pattern here, bro?
Trout
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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