I have not been diagnosed as having Lyme disease...yet. I took one test, it was negative. I never had a rash or bite that I remember or ever noticed a tick on me. My symptoms that I think could be related are as follows: 1) buzzing in my ears, was diagnosed as having Meniere's disease BUT have none of the other symptoms of the disease except minor hearing loss 2) shin splints and ankle pain for no apparent reason, (I do no sports or any related activity that would cause this) makes it very hard to do any walking or any of my usual routine. I have been in PT for six weeks for this, with some improvement 3) tennis elbow for no apparent reason, except possibly injuring arm doing yard work 4) increased arthritic pain in hands and pain in arms like carpel tunnel 5) at some point I started waking up in the morning with pain and stiffness especially in my legs, that does go away after moving around and stretching. I went to my dermatologist for what I had been told by my regular doctor was a lipoma on my stomach which he said was not a lipoma not sure what if anything it is at this point. When hearing of my plantar fasciitis (I have had that for 6 years, way before these other symptoms) and other aches he suggested I might have Lyme Disease. He wants me to start a trial of doxycycline. Does this sound like Lyme Disease to anyone out there??
[ 29. March 2008, 10:35 PM: Message edited by: silvermoon ]
Posted by bettyg (Member # 6147) on :
welcome to the board; glad you found us!
please break up your solid, continuous block text
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Posted by lymednva (Member # 9098) on :
Breaking this up so it's easier for most of us to read.
I have not been diagnosed as having Lyme disease...yet. I took one test, it was negative.
I never had a rash or bite that I remember or ever noticed a tick on me.
My symptoms that I think could be related are as follows:
1) buzzing in my ears, was diagnosed as having Meniere's disease BUT have none of the other symptoms of the disease except minor hearing loss
2) shin splints and ankle pain for no apparent reason, (I do no sports or any related activity that would cause this) makes it very hard to do any walking or any of my usual routine. I have been in PT for six weeks for this, with some improvement
3) tennis elbow for no apparent reason, except possibly injuring arm doing yard work
4) increased arthritic pain in hands and pain in arms like carpel tunnel
5) at some point I started waking up in the morning with pain and stiffness especially in my legs, that does go away after moving around and stretching.
I went to my dermatologist for what I had been told by my regular doctor was a lipoma on my stomach which he said was not a lipoma not sure what if anything it is at this point.
When hearing of my plantar fasciitis (I have had that for 6 years, way before these other symptoms) and other aches he suggested I might have Lyme Disease.
He wants me to start a trial of doxycycline. Does this sound like Lyme Disease to anyone out there??
My response to this:
Of course we can't dx you over the Internet, and we are not medical professionals, at least I'm not!
However, you do have some symptoms that could be attributed to Lyme. I think a trial of doxy is a good idea.
How much does he want you to take? Did he say how long the trial would last?
Did he offer suggestions of what to do next, if you react to the doxy?
Usually a minimum of 300 mg/day, divided into two doses is recommended for Lyme. Many of use take 200 mg/twice a day.
If you start on doxy you should look for what is called a herxheimer reaction.
Most people with Lyme will react within a few days, having increased symptoms for a few days.
Then we usually herx every 4 weeks while on Lyme treatment.
I would suggest that you read on this site for more info on Lyme, symptoms, etc. You may also want to look for a LLMD in your area.
Welcome to Lymenet. Posted by silvermoon (Member # 15072) on :
Sorry I messed up, is this better?
Thanks for the advice
No I don't have a doctor yet, I'm thinking its a good idea
My dermatologist ordered Lyme AB test guess it's not the best
He suggests 60 days doxy, I am to think about it he said nothing else
Posted by Lymetoo (Member # 743) on :
What's to think about?? A lifetime of misery ... or a chance to get well??
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 daise (Member # 13622) on :
Thank you Lymednva.
daise Posted by silvermoon (Member # 15072) on :
[QUOTE]Originally posted by Lymetoo: [QB] What's to think about?? A lifetime of misery ... or a chance to get well??
Thank you for you advice!
I have only a few of the symptoms. If I have it, must have had it for 18 months... maybe longer.
Wouldn't I have more of the common symptoms by now?
Taking the high dose antibiotics for 60 days, how sick will that make me? Thanks.
Posted by Lymetoo (Member # 743) on :
Good to see that we didn't lose you!!
Dizziness and lack of balance are fairly "common"...arthritic pain is VERY common.
No two cases of lyme disease are alike.
You will probably herx pretty good....What is your dosage?
Posted by groovy2 (Member # 6304) on :
Hi Moon -
The symptoms you list it is possible infection-
On some people symptoms come and go -
carpel Tunnel was one of my first most painful of my early symptoms --Jay-
Posted by hokie (Member # 14720) on :
Just so you know, you're not the only one with pain as the primary (almost exclusive) symptom.
I went 2 years with pain only; no fatigue, no confusion, nothing else. P.T. and specialists weren't certain what was wrong. "You have a few symptoms of this and a few symptoms of that."
After 2 years, I developed tinnitus (buzzing in ears) and a few other things, but it took literally two years for other symptoms to develop.
I have Lyme. You should find an LLMD. In my opinion, you should not rule out Lyme disease until you have been seen by an LLMD. Good luck to you.
Posted by hokie (Member # 14720) on :
Also, P.T. always helped with my pain but never solved the problem. The pain migrates and changes fairly regularly. Sounds similar to you.
Posted by daise (Member # 13622) on :
Hi Silvermoon,
Yes, possibly Lyme, especially due to arthritis and with tinnitus, shin splints and ankle pain. And the carpel tunnel.
We can get many signs and symptoms. Everyone is different.
On this site look for the forum for finding a doctor (Go to "forum home," above) and post.
Also, go to the top of this page, to "Support Groups" and find a group close by. Contact them asking for an LLMD (Lyme-literate MD) who is also an ILADS doctor.
If it's Lyme, then as you've said, you've had signs and symptoms for a year and a half. It's now chronic Lyme. It means prolonged antibiotics that also reach across the blood brain barrier.
Chronic Lyme is essentially a neurological disease.
Or could be a co-infection like bartonella (from a tick; also from cat fleas or cat scratches.)
Lymetoo has good information to get to Dr. B's guidelines and to the ILADS site.
Do you have any other signs and symptoms that she listed?
Comventional doctors like to give the Lyme Titers Test (ELISA) however, that test is bogus and used to deny treatment.
daise Posted by silvermoon (Member # 15072) on :
Well, I am really scared at this point. I guess that hit me after I read some of what you all are going through...fear and shock hit me big time.
When I first went to the doctor for leg pain they tested me for Lyme disease...the usual doctor's office blood test, guess that's the bogus one
I thought I would be positive but it was negative and I moved on.
So I was surprised when my dermatologist brought up the possibility of Lyme, I just mentioned to him in passing what I have been going through recently.
He has ordered another one of those blood tests although he mentioned their unreliability
He thinks I should do the doxy trial, and if it's Lyme, all of what I have been going through could be behind me....I'm thinking it may not be that easy...? He left me to think it over and did not mention dosage of doxy
I am a bit drug phobic, that must seem nuts to all of you. What exactly am I in for with high dosage doxy for 60 days....I read here somewhere-- vomiting...??
Symptoms for me are just minor other than the leg pain. Arthritis is mainly when I wake up and after moving around a bit it goes away. Same with the arm pain.
And the leg pain has significantly improved with PT, getting better all the time, would I have improvement if it was caused by Lyme's disase?
I have had the tinnitus for a year, when I asked my EN&T dr. if she was sure it was Menniere's and could it be a symptom of Lyme's she was confident of her diagnosis.
But it does seem to be one thing after another with me...Now I have lumps on my stomach...that's what got my dermatologist going, after he detemined it wasn't lipoma...he said there's fascia all over your body, this could be related.
I guess I need to find a LLMD
Thanks for all of your responses, my heart goes out to each and every one of you.
Posted by daise (Member # 13622) on :
Hi Silvermoon,
You wondered about taking high dose doxycycline for 60 days. Frankly, that's nothing compared to what others here take.
Be sure to take probiotics, a few different brands, multiple capsules daily.
Within a few or several days of starting doxy you may briefly have worsening symptoms. Many people get a "herx" at the 4th week mark: all signs and symptoms get worse. I had terrible herx with burning in my upper right arm.
It means germs are being killed off. Herxes are a good thing, in that regard.
Lyme disease is a clinical diagnosis, though testing is used. An LLMD will help you.
I wish you the best.
daise Posted by Piegirl (Member # 14786) on :
I just wanted to share my story with you. Mine started out a lot like yours. I woke up one morning with joint pain in my finger and it was swollen. Went to the doctor. They said it was probably tendonitis.
Well, within the next six months I developed pain and swelling in most my fingers and carpel tunnel like pain in my wrist. Also, pain in feet, toes, shoulders, neck, and knees. NO other symptoms... just pain.
A rhemetogist told me (after extensive blood work and many months of waiting) that something was wrong with me, he just didn't know what. Uh, thanks, no help there.
Anyway, I went on like this for three years with no other symtoms. After taking a high stress job, my joint pain subsided only to be replaced by every other lyme symtom there is listed (maybe minus one or two) and I became VERY ill like a lot of people here.
I'm not telling you this to scare you but to try and keep you from going on to a worse stage. I didn't see a tick or have a rash either. But, looking back I absolutely had the history of tick exposure and now after 7 years of being sick I have reoccuring bullseye rashes.
Please do everything you need to do to figure out if this is lyme. If so, get treatment. I wish you the best while you try to figure this out.
Mary
Posted by silvermoon (Member # 15072) on :
Thanks Piegirl I guess I am still trying to decide whether to just go ahead with the doxy trial my
dermatologist suggested or get a LLMD first and go from there...haven't had Western blot.....
My head is really messed up right now
Posted by hokie (Member # 14720) on :
silvermoon, sorry you are having to go through this. It can be overwhelming. Unfortunately, if you have had Lyme for an extended period of time, it is unlikely that a 60 day trial period of doxy will do much of anything.
It may even convince you that you don't have Lyme (when you may still have it), particularly if you don't happen to get better within that 60 day window.
My pain definitely improved with P.T., but it's still Lyme. That can happen.
If it were me, I would seek an LLMD. If your LLMD says it's not likely Lyme, then that can be meaningful. Your dermatologist, although well meaning, does not have enough specialization to take on something like this. Good luck.
Posted by silvermoon (Member # 15072) on :
Hi hokie
Thanks for taking the time to answer me...thanks everyone.
I do have an appt with an LLMD...TOMORROW...it's a good thing I now, scared just the same.
I felt just as you said, I need a specialist. I have been sent to too many doctors at this point. And though my dermatologist is well meaning, this is not his expertise. I don't want to botch this.
Posted by webmeg (Member # 13647) on :
I think you should try the Doxy. Go with 200mg/day for the first week. Then increase your dosage to whatever they gave you (hopefully 300 or 400mg/day).
Doxy is pretty easy to take. If you take it with food (like after a meal or snack) you reduce the likelihood of stomach upset. Drink plenty of water with it.
Keep a journal of your symptoms when you start the abx. You might feel worse before you feel better.
~webmeg
Posted by hcconn22 (Member # 5263) on :
Lyme risk
You said you may have injured yourself gardening - 1)you go outside 2) you live in PA. Both these are high risk things for Lyme. Are there deer in your area and or others with Lyme?
Other symptoms seem consistent with possible lyme and or co-infections.
Get tested and checked out by an expert- the longer you go the worse it gets.
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