posted
Hello Everyone, I am new and am looking for help. I have been sick for 6 years now. 6 years ago I got sick. I was sick in the hospital for a week, the doctors could not find what was wrong I and high fever, could keep food done, and lot of pain all over my body. They let me go after a week and really didn't know what was wrong. Then a month later I got sick again, this time after testing the said my gallbladder needed to be removed. So they removed my gallbladder and I thought I would get better. Then as time went on I begin to pass out, and was dizzy all the time. I was seen by many doctors and told I had Neurocardiogenic syncope. As time went on things did not get better. Two years later I begin to have heart racing and chest pain. I was told after testing I had SVT. I underwent an EP study, and ablation. Then thing still got worse. SO they did another Ep study, ablation, and placed a pacemaker. I was told thing should start getting better but they never did. I begin to start having feeling of Fatigue all the time, I was always tired, then Shortness of breath, and lots of muscle pain. I was referred to Mayo, where they said I had POTS (Postural Orthostatic Tachycardia Syndrome) the started meds, and made adjustment to my pacemaker, and said things should get better. They didn't they got worse. I begin to not been able to get to work everyday due to passing out, dizziness, fatigue, joint pain. So again I was referred to Cleveland Clinic where they also said I had POTS after testing, but also had low blood volume, and rapid blood flow. Last year due to how sick I was I had to quit working. Things are still getting worse, now I was headaches all the time, doctor don't know wants causing them, muscle pain so bad I can hardly walk some days, I am using a wheel chair some days due to dizziness, and sightedness. My shortness of breath is so bad some days that I use oxygen on bad days, and at nights, I forget things all the time, I have had change in vision, and blurred vision a lot of the time. I have mood swing and seem to get down a lot. The list could go on for a long time. Last week for the first time ever it was bought up by one of my doctor that maybe you have Lyme's Disease. So they drew the blood and I am waiting of the results. I don't get why over the last 6 years they never thought about Lyme's. I grew up living the weekend on the river and camping in the Midwest. I was even camp consolers in the summers while I was in college. I can't even count how many times I pulled ticks off me. But I don't remember ever having a rash, or getting bit. I am worried about getting my results as part of me is hoping this will be it and finally know what is wrong, but at the same point I hope not. Anyways I am just looking for support, information, and want to say hello! Posts: 51 | From Des Moines, Iowa | Registered: Jul 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hi looking,
You may have come to the right place...we'll have to wait and see what the test results tell us...or not.
Your history of taking ticks off of your body is enough to suspect lyme. or at least some TBD(tick borne illness).
Most of us...I believe have hypercoagulated blood in contrast to your free flowing blood...
The Mayo and Cleveland Clinics are not very good at recognizing TBD's.
MOST mainstream medical facilities are deficient in this regard for many reasons.
POTS has definitely been brought up around here before...I would suggest you do a search on it to get some opinions...
I suspect my daugter of having that first thing you mentioned...cuz she'll just loose all color and flop on her face occasionally.
Where did your doctor send your western blot blood test? Cuz if it's just the ELISA then it's not a good enough test....
Actually a negative on the western blot does'nt determine you don't have lyme either...it says so on the test result sheet itself...
Sounds like you've been thru the medical mill as have most of us around here.
Hang around and maybe we can get to the bottom of your ailments.
Lot'so smart folks around here.
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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posted
You've come to the right place. There are many here that can be a help in the beginning. You will learn so much. When learning keep an open mind as everyone has an opinion on what does and doesn't work. Also, remember, the people giving the opinions most likely have lyme...................
Posts: 547 | From Maryland | Registered: Mar 2005
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quote:Originally posted by lymie tony z: Where did your doctor send your western blot blood test? Cuz if it's just the ELISA then it's not a good enough test....
Actually a negative on the western blot does'nt determine you don't have lyme either...it says so on the test result sheet itself...
OH my goodness!! YOu need to get tested thru Igenex Labs in CA ASAP.
The test you just took MIGHT show positive, but if it doesn't, don't lose hope!!
YOu also need to get tested for a disease called babesia and one called ehrlichiosis.
Those are two common "co-infections" that ticks carry.
You have many symptoms that are somewhat "common" on this board...all caused by "Lyme & Co."
REad this and be sure to read the last part, written by our board member "Michelle M"...You may be shocked!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
Originally posted by LookingforHope: Hello Everyone,
I am new and am looking for help. I have been sick for 6 years now. 6 years ago I got sick.
I was sick in the hospital for a week, the doctors could not find what was wrong I and high fever, could keep food done, and lot of pain all over my body.
They let me go after a week and really didn't know what was wrong. Then a month later I got sick again, this time after testing the said my gallbladder needed to be removed. So they removed my gallbladder and I thought I would get better.
Then as time went on I begin to pass out, and was dizzy all the time. I was seen by many doctors and told I had Neurocardiogenic syncope.
As time went on things did not get better. Two years later I begin to have heart racing and chest pain. I was told after testing I had SVT.
I underwent an EP study, and ablation. Then thing still got worse. SO they did another Ep study, ablation, and placed a pacemaker. I was told thing should start getting better but they never did.
I begin to start having feeling of Fatigue all the time, I was always tired, then Shortness of breath, and lots of muscle pain.
I was referred to Mayo, where they said I had POTS (Postural Orthostatic Tachycardia Syndrome) the started meds, and made adjustment to my pacemaker, and said things should get better. They didn't they got worse.
I begin to not been able to get to work everyday due to passing out, dizziness, fatigue, joint pain.
So again I was referred to Cleveland Clinic where they also said I had POTS after testing, but also had low blood volume, and rapid blood flow.
Last year due to how sick I was, I had to quit working. Things are still getting worse,
now I was headaches all the time, doctor don't know wants causing them, muscle pain so bad I can hardly walk some days,
I am using a wheel chair some days due to dizziness, and sightedness.
My shortness of breath is so bad some days that I use oxygen on bad days, and at nights, I forget things all the time, I have had change in vision, and blurred vision a lot of the time. I have mood swing and seem to get down a lot. The list could go on for a long time.
Last week for the first time ever it was bought up by one of my doctor that maybe you have Lyme (NO's in lyme} Disease.
So they drew the blood and I am waiting of the results. I don't get why over the last 6 years they never thought about Lyme.
I grew up living the weekend on the river and camping in the Midwest. I was even camp consolers in the summers while I was in college.
I can't even count how many times I pulled ticks off me. But I don't remember ever having a rash, or getting bit.
I am worried about getting my results as part of me is hoping this will be it and finally know what is wrong, but at the same point I hope not.
Anyways I am just looking for support, information, and want to say hello! [/QUOTE]
Hi Des Moines; I'm sending you a private message, PM, with 12 pages of newbie sites to visit.
Notice where I'm from neighbor! Bettyg
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posted
Sorry you are so sick and the docs haven't been much help. Many AMA docs diagnose based on test results only and either don't listen to the patient or can't think outside of the box.
Hubby has mainly G.I. and neuro symptoms. Very few docs make the connection that the symptoms are caused by the same problem. Lyme is a multi-systemic illness (can affect cardiovascular, neurological, pulmonary etc systems).
Medicine has become so specialized that many docs have forgotten that the hip-joint is connected to the thigh bone. Especially with infectious illnesses many systems in the body are affected and it all has the same cause.
LLMD's (Lyme Literate Medical Doctors) are the only ones who can put all the pieces together. If you had cancer you would go to an oncologist -- if you have Lyme or a tick-borne disease you need to see an LLMD. Would you rather see a doc who has only ever seen a handful of patients with your disease or one who has seen thousands of patients with your disease?
Hubby went to Mt. Sinai Hospital in New York when trying to get a diagnosis. They were no help at all -- in fact he saw 14 neurologists and only one believed that Lyme was his problem. Unfortunately that doc missed the coinfections of Babesia and probably Bartonella so effective treatment was delayed even longer.
Look at it this way, as sick as you have been and still are, what is one more doctor's appointment? Please go to an LLMD. Even if your current test is positive you may not get adequate treatment -- obviously they didn't know enough to go ahead and test you for coinfections.
You do know you were exposed to ticks. Hubby never knew about the tickbite and did not get a rash. His odds of being bitten were much lower than yours. I bet you didn't know that tick spit has an anesthetic in it that keeps you from feeling the bite!!!
Many of your symptoms are on the Lyme symptom list. Read the Newbie links and especially Dr B's 2005 guidelines.
There are many friendly people here to help. Ask all the questions you need to.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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