Hi I am glad i found this place lots of information. Thank you to those who have so much help for these people.. Here is a history of me and a few questions. ABut 20yrs ago my sis found a tick on the back of my neck. My dad got it out and nothing came of it. No rash, just seemed to get very sick a lot and had joint pain in my arms and knees. Aout 10yrs after the finding of the tick I got this "bulls eye" rash, oddly enough is was around december( i am in maine). They treated as a type of rash and that was that. A few summers later I got one on my arm it started as a bump then made the bulls eye. Nothing was really done for that one. The final one was on my other arm. Stated the same way they treated this time as ring worm. I had an infant and a 3yr old neither of them got nor had my hubby and I only had the one lesion. I was not convinced that was what it was but i went along with the creams and so on..nothing took it away i left it alone and finally it was gone. This is what had brought me looking for your site. Over the past 4 years I have gone through cycles that are usually the same..aside from the vision problems that come and go, from blurred to spotty. About every 2-3 months i get this horrific migrain, feels like my brain is going to bust out through my skull. I get through that and the next few days I am wiped out and very irritable. Everything aches my back become unbearable and my neck is tight. Then I get up about a week later and my joints kill, my breathing is shallow, i feel ill to my tummy and i have a fever from 102 to 103 i am so tired i cant even function. I go to then docs she does her usual once over and does the blood work, which i know what will happen my liver enzymes come back elevated. They test for hep and the liver fnction test which always come back fine. She has also done a couple Anti-neuclar antibody test for lupus, that comes out fine. This time though I get there and she sees the 5 or so bug bites on my side and tells me it shigles..i tell her no that i killed the spider that bit me. She then tells me she thinks it Lyme disease. sends me on my way with script for doxycyline and prednisone.. No blood test and says we will check it in 3 weeks. Oh I should mention that i had knee surgery that was nothing at all, but there is still pain, i have horrinble anxiety and my whole boby hurts most of the time. SO here i am with the questions.. Should I have a blood test? Does this sound like lyme disease?? Has anyone hear of or know if you can get more than a erythema migrans rash if left untreated or was possibley bit tha many times?? SOrry this is so long i didnt mean for it to be but I thought it might get you guys a better idea of what I feel like..thanx to whom ever responds I appreciate it Hail
[ 23. July 2006, 10:05 AM: Message edited by: Hail ]
Posted by Lymetoo (Member # 743) on :
HAIL said:
Hi I am glad i found this place lots of information. Thank you to those who have so much help for these people.. Here is a history of me and a few questions.
ABut 20yrs ago my sis found a tick on the back of my neck. My dad got it out and nothing came of it.
No rash, just seemed to get very sick a lot and had joint pain in my arms and knees. Aout 10yrs after the finding of the tick I got this "bulls eye" rash, oddly enough is was around december( i am in maine).
They treated as a type of rash and that was that. A few summers later I got one on my arm it started as a bump then made the bulls eye.
Nothing was really done for that one. The final one was on my other arm. Stated the same way they treated this time as ring worm.
I had an infant and a 3yr old neither of them got nor had my hubby and I only had the one lesion.
I was not convinced that was what it was but i went along with the creams and so on..nothing took it away i left it alone and finally it was gone.
This is what had brought me looking for your site. Over the past 4 years I have gone through cycles that are usually the same..aside from the vision problems that come and go, from blurred to spotty.
About every 2-3 months i get this horrific migrain, feels like my brain is going to bust out through my skull. I get through that and the next few days I am wiped out and very irritable.
Everything aches my back become unbearable and my neck is tight. Then I get up about a week later and my joints kill, my breathing is shallow, i feel ill to my tummy and i have a fever from 102 to 103 i am so tired i cant even function.
I go to then docs she does her usual once over and does the blood work, which i know what will happen my liver enzymes come back elevated. They test for hep and the liver fnction test which always come back fine.
She has also done a couple Anti-neuclar antibody test for lupus, that comes out fine. This time though I get there and she sees the 5 or so bug bites on my side and tells me it shigles..
i tell her no that i killed the spider that bit me. She then tells me she thinks it Lyme disease. sends me on my way with script for doxycyline and prednisone..
No blood test and says we will check it in 3 weeks. Oh I should mention that i had knee surgery that was nothing at all, but there is still pain, i have horrinble anxiety and my whole boby hurts most of the time.
SO here i am with the questions.. Should I have a blood test? Does this sound like lyme disease?? Has anyone hear of or know if you can get more than a erythema migrans rash if left untreated or was possibley bit tha many times??
SOrry this is so long i didnt mean for it to be but I thought it might get you guys a better idea of what I feel like..thanx to whom ever responds I appreciate it
======================
I'll be back later.
Posted by Lymetoo (Member # 743) on :
Hail .. All I can say is you need to find an LLMD right away. If this isn't Lyme, I don't know what is. I'm not diagnosing you...just giving my opinion.
You can get bit many times. I've been bitten probably a hundred times. The rash can come and go. The absence of the rash means nothing. I never even got a rash, that I know of.
Please begin reading the links below and become informed. Knowledge is power.
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
Posted by Aniek (Member # 5374) on :
Hail,
Hello and welcome.
The reason Lymetoo reposted your post is that many of us have difficulty reading large chunks of text without spaces.
I suggest you post in the seeking doctors forum. It sounds like your doctor does not really understand Lyme. It is imperative that you find one that does.
Most doctors, even many who say they treat Lyme, don't really understand long-term Lyme. The term used for a knowledgeable doctor is LLMD, Lyme Literate Medical Doctor. This isn't an "official" term, but one used by the Lyme community.
Have you ever been tested for Lyme disease? Tests are not fully reliable, particularly when you've had it for so long. It can result in false negatives. But a positive test always helps.
A big concern I have is that your doctor gave you a prescription for prednisone. Steroids help infections grow stronger. Many people with Lyme get worse when they go on steroids. I'm not giving medical advice and saying don't take the prescription, but you may want to look into this issue.
Posted by Carol B (Member # 9110) on :
Hello Hail, Should I have a blood test? Does this sound like lyme disease??
In my opinion, yes you should most definitely have a blood test-sent to a lab specializing in Lyme. Mine was sent to Igenex in California. There are other labs I am not familiar with.
Here's the tricky part though- if your test happens to come back as negative for Lyme- you may still have Lyme, or a co-infection- the diagnosis can still be made clinically- according to your symptoms even when bloodwork is negative.
I don't remember everything in your post- but three weeks of antibiotics is not nearly enough if you do have Lyme. In my case, when i was first diagnosed by my Primary Care Doctor, henceforth known as Dr. Duck, I was treated for three weeks.
I had multiple rashes at this time-looked like spider bites,too, but didn't itch. I have had spider bites inthe past and they really hurt-these did not hurt.
I did feel better at the time, but then a month after I stopped the three week course I began to develop one infection after another in various parts of my body. Dr. Duck kept referring me to one specialist after another, Duck Buddies everyone, when the infections didn't clear up.
I had begun to research Lyme, just like you, and after two years when I was diagnosed with seizures it was the last of straw and I sought the expertise of an LLMD-Lyme Literate Medical Doctor.
I cried with relief when she listened to me and agreed she thought I had Lyme Disease.Suddenly it all made sense. It just so happens I did test positive for not only Lyme but also Chronic Lyme. She was willing to treat me for Lyme even if the bloodwork had not come back positive.
I am still learning myself, and have only been in treatment for four months. I was also tested for Lupus-but it was negative.
It can be exhausting trying to figure out what's wrong. Your questions should really be answered by an LLMD. This has just been my experience.
Carol
Posted by mbroderick (Member # 5220) on :
Sounds like you may have Ehrlichia, too (high fevers and elevated liver enzymes).
I'm concurring with everyone else here...antibiotics not given long enough etc. etc. etc. - get to a LLMD (Lyme Literate MD) as soon as possible!
If you need some names of doctors in your area who are qualified to treat you, send me a private message (The icon with the 2 people and the envelope).
Marian
Posted by bettyg (Member # 6147) on :
Earlier, I sent you my 12 pages of newbie links to visit.
Posted by Michelle M (Member # 7200) on :
Hiya Hail!
What the 'Hail' is that Duck doin' givin you steroids if she thinks you have Lyme???
Now, a'course we can't go 'round diagnosing people, since we're just lymies ourselves and not doctors. But after reading your introduction, I'd just about eat my hat if you didn't have lyme and a coinfection or two. Babesia will give you a screamin' migraine! (Trust me, I have babesia and exploding head!!) Also, the 'shallow breathing' you describe is called "air hunger" -- a classic babesia symptom. You have GOT to test for babesia at IGeneX. Pronto. Antibiotics do not touch it; it requires special anti-malarial meds.
Non-lyme literate docs CONSTANTLY misdiagnose EM rashes as everything under the sun except lyme. Forget about that. The rash can reappear long after your bite, in various other places, randomly.
It is virtually impossible to try and educate your doctor about lyme disease. It's almost a full time job to educate yourself about it!! Just reading the Newbie Links will convince you of that!
The best thing you can do for yourself? Find an LLMD fast! Lose the steroids! (Though be careful as some steroids require tapering down rather than just stopping cold.)
This is just about the most important thing you can ever do for yourself.
You ARE going to get better, but probably not as long as you're under the care of a duck who does not understand tickborne diseases. Please post in "seeking a doctor" and find a good doctor! Then please let us know how you are doing! Ask lots of questions -- we're here for support just about 24/7 !!!
Michelle
Posted by Hail (Member # 9671) on :
Hi thank you everyone you guys are quick to respond.. Iwould have done this sooner but I had a rough weekend..
I wanted to put everone at ease that I didnt take the steriods they actually for my asthma, but
I dont take them because I actually fear them, my husband has hip deterioration from them giving him them for a head injury years ago.
I will look for a dr when I get to fla in sept. We are doing the big move until then I will be my usual self and demand what I want from the primary Dr.
I will look at the stuff you guys have suggested.
One more quetion though..anyone feel worse on doxycycline?? I am feeling worse and its been since thurs that I have been taking it..
thank you all again Hail
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Hail: One more quetion though..anyone feel worse on doxycycline?? I am feeling worse and its been since thurs that I have been taking it..
YOu are likely "herxing"...that means that the Lyme spirochetes are dying off and when they do, they throw off toxins....thereby making you feel worse.
I don't know about the availability of LLMD's in FL. I hope there is one. What area are you moving to?
Glad you're not taking the prednisone!!! Besides making the Lyme go deeper, it could keep any Lyme tests from showing positive.
Keep in touch with us, OK?
Posted by Hail (Member # 9671) on :
i am moving to west melbounre Florida. its near coca beach on the east coast..
Posted by Aniek (Member # 5374) on :
Hail,
Feeling worse on doxy is a sign that you do have Lyme or another bacterial infection. When the antibiotics start working, symptoms increase because of the herx reaction Lymetoo mentioned.
I would suggest keeping a journal of your symptoms, along with any medicines or supplements you take. When you move and find a doctor, this will help with a diagnosis.
Posted by Hail (Member # 9671) on :
Hi again.. By taking the doxy it would not affect the outcome of the lyme test if I have one correct?? The pediatricians office that I work said you will always have a pos lyme test if you have it. But I am coming to realize hes not exactly brilliant with this either... thanks Hail
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