posted
Hi- Below is a post from another website that I posted about possibly having Fibromyalgia. (Hence the Fibro references throughout)
Several people have told me that I could possibly have Lyme disease based on my symptoms, and would like to know what you think.
It is important to add, that last March I caught a NASTY illness while my son was in the hospital. During that time, I was bit by a tick. I don't recall a "bulls-eye" rash, but it did take the bite a few months to heal. I have mentioned Lyme to my GP, and he blew me off. I am really desperate, and would appreciate any input. Thank's so much. Sorry for the infinite post! My post is as follows:
**** I am copy and pasting from a thread I started in the "Fibromyalgia" section. I was referred here. My symptoms are below, but am confused because I heard Lyme causes "low" body temp not low grade fever. Please let me know if it sounds like Lyme.
I've posted on these boards before, although not on the Fibro board. I am a 25 y.o. female, and have been having symptoms since I was 17. They have progressively gotten worse, to the point where I can't do anything anymore. I apologize for my inevitable long post, but know that my background can better give you all a greater idea of my problem. I was reading the sticky about Fibro info for newbies. The list was sooo long, and so similar to my problems that I am beginning to wonder. The info I have read from local doctors, and/or most medical sites list the symptoms for Fibro as limited. Much more limited than what I've read here.
So... Here's what's been going on.
At seventeen, I started getting HORRIBLE pain in the center of my ribcage that radiated to the center of my back. (Right beneath the bra line) It was so horrible, it literally took my breath away. It happened often. Went to chiropractor who treated me, but couldn't find a cause. The chiro was the first person to mention that I probably had Fibro, but I blew it off. Pain increased over the next year. At 18, it was determined my gallbladder was shot, and it was removed June of 2000, although I still occasionally get the rib/back pain attacks.
From 18 on, my symptoms increased. I would frequently tire, get dizzy spells so bad I have had to drop everything and sit. Heart palpitations then began, and have never let up. I was diagnosed with MVP last year. I went to a Neurologist last year as well. Never having had headaches in my life, for the past year they have been crippling. Very odd stabs of pain, and then pressure in my temples, and just below. The dizziness increased over the years to the point where sometimes, if I so much as shake my head, I get dizzy.
I am usually short of breath. Activity or none, I just feel very "weak." I frequently get bronchial/pneumonias and such. Diagnosed with asthma. Never having had sinus issues, this past year has been horrible. My nose is constantly clogged up. I can't breath through it, my nostrils are red everyday. My throat is always scratchy. My face flushes, and I am pale. The exhaustion I have everyday is unbearable. Mind you, I am 25, and I see the people my age with so much energy. Sometimes I can't even move. I catch infections easily. I had had a chronic UTI for the past 6 months. Between URI, UTI's, and sinuses, my Dr. has prescribed a WHOPPING total of 17 antibiotics over this past year alone. (More than one a month sometimes) Not to mention the antibiotics I've taken for dental work, of which I've had a ton of the past few months. There is no doubt that the meds have completely messed up my system. My stomach- Is horrible. I know I have IBS, due to the colonoscopy that didn't find squat last September. For a 25 y.o. to have a colonoscopy, I am telling you it was bad. I have microscopic hematuria off and on for the past year. Had abdominal CT scan, and kidney ultrasound. Can't find a thing wrong. And now....The fevers...For a solid year, they've remained. Usually low grade, but definately above my normal. They range from 98.1 (which is fine of course) and by the end of the day, I am up at 99.5 to 99.9 I am generally ill feeling. Aches and pains everywhere. My back pain is horrible, and I have terrible neck and shoulder pain. Sometimes elbows and knees too. Most days, I have pain. Three doctors have diagnosed me with FMS, and I always blew it off. However, I tried medication. They had me on Tramadol, Flexiril, and Amitryptiline. Didn't really help, because it made me feel like a zombie, so I quit taking it. (Not a fan of medication) Thinking I am much sicker than a disease that was just "painful" not thinking that it produced all these physical symptoms until I read the sticky. My bad, of course. I have been tested for everything from Diabetis to Lupus. Nothing. So I am wondering, for my own sanity (because the search for illness is getting old) could Fibro REALLY produce all these symptoms? Can it really be so severe to cause horrible chest pains, muscles, fevers, infections, unbelievable exhaustion, etc... Did any of you ever feel like you were so bad off that it couldn't be fibro only to learn that it really was? I am truly at my wits end. Sick and tired of being sick and tired. I hope you all can help.
Posts: 11 | From Missouri | Registered: Apr 2007
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Hi t,
I'm sorry you're here and hope we can help you sort things out.
May I ask a question? What happened when you took the antibiotics for the multitude of infections?
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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You know, regarding the antibiotics, you'd think I could give you a straight answer. I think they've really messed me up. When I caught that virus last spring, I got really sick. That was around the same time I got the tick bite. Of course, I had symptoms years before, but NOTHING like I've had this past year. I seriously feel like I am dieing. I'm young, and I swear I feel so old.
Umm...I've rarely been OFF of antibiotics this year, so I don't ever know if I am sick from the antibiotics or infections. (If they REALLY are infections) Hasn't seemed to help AT ALL. I may feel better for a week, then BAM...out of it again. I'd go as far to say that they make me feel worse.
They've ruined my stomach... Bleeding in bowels even on occasion. (Sorry TMI, but you know...) GP always said "Eat Yogurt!" I did have a colonoscopy, and they said the antibiotics did it.
I've had numerous doses of Amoxil, Augmentin. Mix in some Penicillin, Bextra, Cipro, Levaquin, Z Pack, Macrobid.... Big doses, little doses....
I just feel like crap all the time, I can't tell the difference. -sigh-
Posts: 11 | From Missouri | Registered: Apr 2007
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
You know... the reason I asked was this...
I had been having weird things go on for a very long time. I hadn't been on antibiotics in years. I finally came down with something and had no choice but to take them.
Anyway, long story even longer... I went to take them and felt bad, really bad, so I called the doctor. I told her I was having a bad reaction; she switched me to another antibiotic and another, and another, etc.. All of them made me feel like crap. Eventually, we hit on something I could stand and I completed a 2 week course hoping the Staph Aureus was gone.
Fast forward about a year and I get a bunch of bites one summer and become too sick to deny.
So I'm on the phone with someone from a Lyme hotline and they ask me about antibiotics and I say I am allergic to all antibiotics. She asks "What happens? And I tell her I get fluey and feverish and all kind of weird miserable stuff. The woman then says, "ha, with 38 out of 43 symptoms, on this checklist, and that reaction to antibiotics sure sounds like you have Lyme."
I made arrangements to see a Lyme Literate doctor and was tested and diagnosed, clinically.
Now, I'm not saying that's what's going on here. I am not a doctor or anything medical at all.
I do think it would be beneficial to see a Lyme Literate MD to be evaluated. You can post in the "seeking a doctor" section here and ask for a referral to someone in your area.
Good Luck and I hope someone comes along smarter than me to answer, as well.
A tick bite is enough to make me want to get tested and evaluated alone.
Also, eat that yogurt and also get some Probiotics (acidophilus, etc) to replace the good bacteria in your gut.
Antibiotics, usually, make you feel much worse with Lyme before they make you feel better. It can take awhile with a long term infection. However, if you knew what was wrong you could at least be on your way to doing something about it.
Sorry, so long, I'm particualrly babbly tonight. I hope this helps a little bit. Good luck and I hope you find some answers soon.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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I can totally relate and understand your frustration.
My symptoms started as gastrointestinal. I had many tests (colonoscopy, upper endoscopy, barium swallow, CT scans, ultrasounds, etc.) and they all showed NOTHING, except for a stomach motility disfunction and IBS (which came out of nowhere).
Do a search for "Bell's Palsy of the Gut." It describes how Lyme can effect the GI system. Very informational and may convince you that you do indeed have Lyme disease.
The body pain, headaches, and other weird symptoms didn't start until after the inital GI issues. They started around the same time as the antibiotic use. I've been on and off antibiotics (short courses, no more than 10 days) since January of this year. Now I'm on Doxy to treat Lyme and have been continously for almost 5 weeks. It's been rough, but I do see slow improvement.
I've always said, two steps forward, one step back.
I would also suggest seeing an LLMD. It would be very beneficial to you and you can be tested for Lyme (and all its co-infections), but better yet, you'll be talking to someone who understands your symptoms and can clinically diagnose you and begin treatment, regardless of blood tests since they aren't always accurate.
Good luck to you. You may have a bumpy road ahead of you, so hang on tight!
Posts: 81 | From Central PA | Registered: Mar 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
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YES YOU MAY HAVE LYME OR OTHER TBDS!*)!!
You need a thorough Differential Diagnosis by an LLMD which stands for a "Lyme Literate MD". If you check support group listings and call the support group leader nearest you they ought to be able to give you the name of a nearby LLMD or go to the seeking doctors column at this message board and try!!!
I had fibromyalgia from Lyme and it is ALL gone and it is so nice*)!*)!! I hope the same for you!!!
Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
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Member # 7136
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p.s. W E L C O M E !*)*!)!* *!)!*)!*)!*)!*!)!*)!*)*!)!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
When I was diagnosed with Fibromyalgia 27 yrs ago, the only symptoms listed were pain, fatigue, sleep disturbances, and the fact that many patients had MVP.
NOW, they have TONS of symptoms listed for this disease!! What happened!?? They have NO IDEA what's up with this disorder, so they just add the symptoms that people with FM tell their drs they are experiencing.
The "establishment" doesn't want to believe that a national crisis exists with the rampant epidemic going on in this country. So they would rather label it Fibromyalgia.
Remember, the pain and misery of FM is real, but it's NOT a DISEASE. It is a constellation of symptoms....the same symptoms as Lyme disease.
The fact that you got ill after a tick bite says it all!!!
The fact that drs can't figure out what's wrong says it all.
Look to LYME! A diagnosis of FM only gets you treatment for the symptoms....which you've tried and couldn't tolerate.
Why not treat the CAUSE of your symptoms? I'm not saying you HAVE Lyme since I'm not a dr....but at least make an appointment with a Lyme Literate MD and FIND OUT if it's possible.
Then you can get REAL treatment....treatment which will get you better!!!
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