posted
Hello. This is my first time on this site. I live in the Tampa Bay area of Florida and am beginning to wonder if I have Lyme Disease. About 6 weeks ago I suddenly cam down with what I though was the flu or a virus. I had a very high fever [near 104] and bad diarrhea. These general symptoms lasted about 4-5 days, although the fever was down below 100 by the second day. My doctor prescribed Cipro - this was the 4th day. At about that same time, I developed an ugly rash on my back which my doctor said resembled shingles, and I also began pain and stiffness in my wrists, neck and back. We stopped the Cipro and since that time I have been in constant pain with swelling and inflammation in both feet and both wrists. Blood tests have ruled out a bacterial infection and Lupus and I am now seeing a rheumatologist who is treating with Prednisone until my followup this week. They have not yet ruled out arthritis. I have general weakness in my wrists and hands. Otherwise, the only other 'thing' is what appears to be a crackling sensation [not constant]in my left ear. I am getting a stronger feeling that I should be exploring the Lyme Disease possibility. Any comments will certainly be appreciated. Thank You Posts: 1 | From New Port Richey, FL, USA | Registered: Sep 2003
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posted
I'd like to know if you found any direction (medically) to go with your problem. My son is having similar problems. Many tests, nothing positive, taking the next step is difficult because you don't know where to turn.
Posts: 6 | From Lower Moreland, PA, USA | Registered: Sep 2003
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quote:Originally posted by jean: I'd like to know if you found any direction (medically) to go with your problem. My son is having similar problems. Many tests, nothing positive, taking the next step is difficult because you don't know where to turn.
Posts: 6 | From Lower Moreland, PA, USA | Registered: Sep 2003
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quote:Originally posted by jean: I'd like to know if you found any direction (medically) to go with your problem. My son is having similar problems. Many tests, nothing positive, taking the next step is difficult because you don't know where to turn.
Posts: 6 | From Lower Moreland, PA, USA | Registered: Sep 2003
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posted
Hi Rich, Welcome to LymeNet. Sorry you're having these problems, Keep in mind - we're not drs, but we've learned a lot through experience with tick-borne illnesses and we'll do our best to help you get the answers you need.
Back in July, did you have a tick bite? or were you in an area you COULD have had a tick bite? Is the rash still on your back? If it is, take a picture of it with a coin or ruler to show the size. Date it & keep with your important medical info forever. It could be needed again in the future.
Some years ago, I was told by a Lyme Literate Med Dr (LLMD) that 'summer flu' was a red flag to suspect Lyme disease. Anytime LD is suspected, Co-infections are also a possibility.
Dr Burrascano says that if there is ANY possibility that a person has Lyme disease, they should NOT be given steroids. This allows a rapid progression of the disease. Steroids suppress the immune system and your body is not able to fight the disease as it should. If you decide to get off the steroids, do not stop all at once. You have to get instructions on this.
It's possible that the symptoms you're having could be any of the Tick-borne illnesses - Lyme, Babesiosis, Ehrlichiosis, Bartonella.
Considering the symptoms you've developed in 6 weeks, I'd recommend you see a LLMD for evaluation ASAP. If it is NOT Lyme, they will find out what it is. LLMDs also know the best labs to use. Sadly, all labs are not created equal & there are few that specialize in Tick-borne diseases (Ex: IGeneX in Calif, Med Diag Lab in NJ, Bowen Research Lab in Florida).
Go to "Seeking a Dr" and ask for help in finding a LLMD. It helps to put your location in the title. LLMD's names & info are not given here, but info will be e-mailed to you.
Top left, click Support Groups and see if they can help you find a good Lyme dr.
Go to www.ilads.org/ Print copies of both: On left:"Basic Info" 3 pages, concise facts. Note: # 3 & 4 - tick bite & rash Also: # 5, 6, 7, & 8 - testing
On the right: "Diag Hints & Treatment Guidelines" by Dr Burrascano. 32 pages of excellent info. Written for drs to use & patients to learn. Highlight, write in the margins, etc to find info again quickly.
pages 4-5 & 20-24: Co-Infections (very important that they be considered)
If you have Lyme, you must have adequate treatment or it will simmer along & flare up again.
Start a notebook & keep all Lyme info in one place. Make a list of symptoms with dates they started, if you know them.
"Symptoms of LD" by Morrissey. You may find problems you didn't realize were symptoms of Lyme. http://www.ocean-beach.com/_tick/tick_lymesymp.htm When link is underlined, you can't see the "underline" before & after 'tick'.
posted
Rich, cbb has given you great advice. I hope you will take it. I'm concerned that you are OFF antibiotics and ON steroids! The two worst possible things if you have Lyme or co-infections!
Please do some research here so you can inform your dr. But the BEST idea would be to find an LLMD FAST!!!!!
I hope you are able to travel, because I don't think there are any in your area.
I will email you.
Jean....hope you find the proper help also. Let me know if I can help you.
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OOPS....Rich, please email me. I see your address is not available. You can click on the letter or postcard icon next to my name/date to email me. Tell me who you are by your screen name. Thanks.
Posts: 96239 | From Texas | Registered: Feb 2001
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Listen to the others that have just given you advice.Many of us listened and TRUSTED our doctors way back, when initial symptoms started and the price we have paid has been the joy of living.
Don't wait..... Your top priority, right now, should be to get into see a LLMD.
It was this discussion board that helped me so much since I first found it 2 years ago.
David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Hi Rich,
If you do have Lyme, you really should not be on Prednizone.
You are within your window of opportunity to be cured. Unless the docs can come up with another explanation that accounts for ALL OF THE DATA, right away, LIKE NOW, it would probably be best for you to go on antibiotics.
Doxycycline is standard but doctors unfamiliar with Lyme tend to underprescribe. Borrelia has a four week replication cycle so you want to be on longer than that, preferably until you have been symptom free for two months. Doxycycline is fairly standard treatment for early Lyme but it should be at least 400 mg per day. 200 can't be relied upon to get it.
Please, don't let them begrudge you a few pills and wind up chronic.
If you do have Lyme, you really should not be on Prednizone.
David
David, what with Prednizone doesn't go well with a lyme treatment? Please shed some light on this. Thank you.
Posts: 15 | From San Diego, CA, USA | Registered: May 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
Post for a LLMD inSeeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. ) See this ( . )thats the size of the larva stage tick... Next nymph size... ( * ) Next is adult ( o ) to ( 0 ) Pretty small????? HUH
posted
Prednistone is a steroid and shuts down, or limits your immune system. This is the opposite of what you need your body to do, namely fight an infection, in this case borrelia.
Please understand that one visit to a Lyme Literate Medical Doctor can preserve a person's future.
We shudder at your stories thinking it's possible you or your family could have Lyme & you might get sidetracked by well-meaning doctors.
Lyme Disease is called the new great imitator. It imitates other diseases.
It's insidious & can steal your life away.
Please take charge of your health.
Lyme is almost a "do it yourself" disease, until you find an LLMD.
You've been given excellent advice by folks who know what they're talking about.
Tell us how we can help.
Best wishes, Jan
Posts: 602 | From Burleson, Texas, USA | Registered: Jul 2004
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rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
Rich,
YES!!!!! STEROIDS ARE THE LAST THING YOU WOULD WANT TO DO IF YOU HAVE LD...THE VERY LAST. You've been given some really good and important advice and links that you should really read and study and bookmark for further reference.
And, if you would, please hit that Post Reply button that is found at the top AND the bottom of this page that you are currently reading, that way you will be letting us know that you have seen these posts, as I see you have not responded, yet.
That way we know that you are actually seeing the posts presented to you. OK?
Welcome to LymeNet and come here very, very often to learn about this very complicated disease.
rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
Oh, and wanted to add, please when posting in the future, hit that Enter key, TWICE, every now and again.
Many here will just pass over posts that have no white spaces in them. There are a lot of readers here who just have a real big problem with reading large blocks of tests. Lyme eye problems if you will.
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