posted
My advice would be to get yourself to a Lyme Literate doctor asap and get a test done by Igenex. If even one band is positive (cdc says otherwise), than it is etremely likely you have lyme, and should start treatment. Lyme symptoms can be anything and everything so your symptoms defenitely tell me that lyme is a strong possibility.
Posts: 370 | From NJ | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Other than that, how was the play Mrs. Lincoln?
Welcome to LymeNet!
Sorry to hear you are having such difficulties. I am glad you have come here to ask questions and learn.
Sorry to say it is very late and I am all "thinked out" and exhausted... so please excuse my non-Lyme answers for the moment.
Just wanted to welcome you and move your post up to the top for the early birds who will certainly be of great help to you... as they are to many others looking for help.
Hang in there and know we do care and we will try to assist you in getting answers- Lyme or not... ok?
Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Welcome and I totally agree that you must get yourself to a Lyme Literate Doctor right away.
Your symptoms sound very Lymie and maybe some coinfections (bettyg's newbie pkg will help explain).
Another informative website is wildcondor.com.
I don't think you have MS...it sounds like LYME, LYME and LYME.
Trust your instincts and don't waste anytime as time is of the essence with this disease. I've had a few friends MIS-diagnosed with MS and it only wasted precious time when they could have been treating the Lyme and coinfections.
Best Wishes and feel free to ask any questions. No question is a dumb question and this is a complicated disease.
-------------------- Take Care, DakotasMom01 Posts: 371 | From NJ | Registered: Dec 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
WELCOME TO LYMENET!&*)*! !*)!*)!*!)*)!*)!*)!*)!*!
You need a doctor to evaluate you but you sound very Bartonella & Babesiosis to me- those are Tick Borne diseases (TBDs) often acquired with Lyme disease. But a doctor will be able to evaluate you the best!!!
Best wishes, WELCOME AGAIN!**)! 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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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I agree with others. See an LLMD.
Because of all of the diarrhea you are having, you may be dehydrated. Your weakness and dizzyness could be related to or exacerbated by diarrhea. If you are having lots of diarrhea you will also need to take probiotics because those will be depleted with diarrhea.
I am not a doctor, just someone who has had lots of diarrhea.
Best of luck to you.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I agree with the others that you must get to an LLMD. You may have a longer term case that is finally fully catching up with you.
My daughter had babeosis and one of the things I kept noticing that her breath had a strange odor, especially at night. My other kids had a sweet smell, but her breath was metallic and strange.
Also, diet, exercise and plenty of rest are VERY important. We find over here that sugar or high--carb eating really exacerbates all symptoms. I recommend trying to take the best care of yourself that you can while you're in the waiting period to get to the right doctor.
Make sure when you get to the doctor you test for all coinfections!!!! Otherwise you'll be like me, treating lyme, and finding out that may not be everything.
Finally, you obviously have kept track of your symptoms (perhaps keep a journal to look for monthy lyme or 21 day bartonella cycles). With your recordkeeping and your ability to identify and articulate your symptoms--You WILL be able to get a diagnosis and treatment and you WILL get better.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Julie,
Just want to agree with many of the writers above; your symptoms sounds like they could be as a result of lyme and tick-borne diseases. I have had many of the symptoms too; including the numbness, muscle pain and stiffness, heart arrythmia, etc., etc.
Tick borne diseases can cause all of these. Tick borne diseases are treatable!
Very important that you get to a lyme literate medical doctor. I understand from others that there may not be many of these in Canada; hope you can get an appointment soon.
Posts: 2557 | From home | Registered: Aug 2006
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What a list of symptoms...welcome to our special club.
It is here you will find many people with numb arms, burning skin, clogged ears and general brain fog. Yet most of our doctors say we're fine!
You are experiencing a lot - some I share with you. The numbness is awful, I know. I get scalp numbness, arch of my foot numbness, fingers, top of my nose (almost like it's tight after a sunburn).
I get lots of twitches and vibrations (shaking under my skin). Perhaps you've had stuff like that, too. Like you said, it's a long list of weird stuff.
The coming and going of all the symptoms - also very irritating. Every day we wake up with a new 'thing'!
IGeneX is a fabulous first step. I would also encourage you to get a prescription asap for Doxycycline -- at least a month or 6 weeks (the most you can get out of your doctor). Start that immediately after you get your blood drawn. INSIST that your doctor write a script.
The sooner you start treatment the better -- while you're waiting for the results you should be treating. You seem very positive clinically.
You asked "will you ever get better"? You will. How quickly? Will probably take months and months. Don't get discouraged.
Will every single thing go away? I don't know. We have many wonderful people on the forum who are completely cured.
We have others that are much MUCH better but have little glitches.
Just because there are some scary stories out there doesn't mean that will happen to you. Everyone is different. Every Lyme case and TBD is different.
Let us know what your IGeneX results show but remember, you can test negative even with a great lab like that, but still have Lyme (and other TBD).
Be smart, read as MUCH as you can. It will be a team effort between you and your doctor.
Oh, and keep a journal of your symptoms. And be wary of miracle "cures".
~webmeg
Posts: 257 | From Connecticut | Registered: Oct 2007
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tailz
Unregistered
posted
I get that feeling of tape pulling on the skin of my forehead, and so far I test positive for Lyme, babs, parvo, HHV6, and EBV.
I have most of your other symptoms, too, but I thought I was alone with that one.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Julie,
If you are using your real name, I would copy and paste all the replies here to a word file for your keeping.
then delete your file under this name (through a moderator who has to do this for you)...
You may have to go to a different forum (general or doctor search) to find a moderator . . .their name would be on the upper left of your sign in name by the icon. I see this forum has no moderator right now.
then sign up again with an code name - it could be similar . . .
but you don't want anyone to Google your name and find private information. Even insurance companies can find you here - anyone - and for who know how many years.
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