posted
just diagnosed with lymes 2 wks ago. Western
band test showed one positive band (41). I am
only taking Ceftin. Looking into this website I
see nothing but frustration. I seem to be
feeling worse than before. Does anyone ever get
better. I have constant headaches, dizziness,
and heart/chest pain. I currently take rozerem
and Ambien CR for sleep, which could add to the
dizziness. I suspect I have had lymes for 2
years. Should I be taking more than 1
antibiotic and for longer than 3 wks. I would
just like to see some positive feedback, I am
only 34 with 3 children and feel like I will
never get better. I have anxiety everyday and
the constant worry is killing me. Any words of
encouragement?? Thank you!
[ 27. June 2008, 06:36 PM: Message edited by: Stefanie ]
Posts: 35 | From MN | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Stefanie,
Sorry that you are facing confusion and frustration. Yes, patients do get better.
However, it can be a long road, so it takes some time to settle into a plan.
Also, many of those here don't have doctors.
You asked: " . . . Should I be taking more than 1 antibiotic and for longer than 3 wks. "
YES. - YES.
And, yes the ambien can be causing some dizziness, too. But that's a very tricky drug. Don't just stop it, it MUST be tapered off if you decide to change.
Can you post in the "seeking doctors" forum here. Go up to Questions and Discussion and you'll see that.
AND . . finding your local support group can offer more help in finding a doctor who is educated in lyme (there is no "s).
You also should be evaluated for other tick-borne infections.
IF you have pets, talk to your vet about how to be sure they don't carry in ticks.
You will have lots of replies soon. It can be overwhelming, but keep in mind that you are a lucky one to be diagnosed.
Even at two years, you've arrived at a point that took may a decade. Best of luck as you sort through all this.
Please forgive the directive orders that are sure to follow and know that most of us are very tired and cut to the chase. We've been there; done that. We offer from our experiences.
Hopefully, you will connect with a good doctor and be feeling better soon.
take care.
(And I will come back with a few links/articles).
Check out the NEWBIE thread at the top of this medical forum.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed here do to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
***** As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
Chronic Bacterial and Viral Infections in Neurodegenerative and Neurobehavioral Diseases - by Garth Nicolson, Ph.D.
=======================================
Please take breaks from your studying - and know that for every article that say how bad this can get - treatment can prevent that or help to reverse symptoms where possible.
But, you also should know that no matter how brilliant an article is that most doctors go by the CDC and the IDSA standards.
Still, those with open eyes - and those who want to get their lives back - are learning more every day.
I hope you find some hope and some good laughs this weekend.
posted
Thanks for your help and encouragement. I know the more research I do I tend to feel worse. I feel as though I am going to die from this.
Posts: 35 | From MN | Registered: Jun 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Many people feel worse after starting any new antibiotic treatment for Lyme. This however (flu like symptoms) should pass.
Also 3 weeks is not enough treatmet- especially if you have had Lyme for 2 years.
I have been on treatment for 6 months and am feeling better. Still have down days, and still under treatment.
In addition to Lyme I also have Bartonolla and Babesia which add to the complications.
Since you are so sick and have a life and kids I would seek the care of an experienced Lyme Literate Medical Doctor.
Lyme is a complicated disease and is not cured with a simple round of antibiotics after 2 years.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Stefanie,
Ohhhh. I hope you have some one who is a good support to you right now.
Also - if you have the need, please be sure to call the emergency hotline number inside the cover of your phone book.
-
It's a tough call, we have to read more to learn how to get through this, but it's also a lot of work and it's sad work.
Do you have a friend who can help you with this ? Someone who is not at all judgmental and can take on study as if a college course ?
If not, just go slow.
Post in finding a doctor. Find your support group and a good doctor.
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Welcome to Lymenet. Sorry you need to be here, but glad you found us.
When you post, please leave spaces at the end of sentences, and break your posts up into paragraphs no longer than one or two sentences, or about three to four lines typed into the message box when posting.
Many of us suffer from neuro Lyme and cannot read large blocks of text, so we end up not reading posts that are not broken up. Thanks!
I'll try to answer several of your questions here.
quote: I seem to be feeling worse than before.
You are probably experiencing a herxheimer reaction (herx) to the Ceftin. That is a sign that you DO have Lyme.
It's normal when we start a new abx and then every 3-4 weeks, depending upon your treatment. It's a sign the drug is killing the spirochetes.
quote: Does anyone ever get better?
Yes, many here have gotten better, gone into remission and we no longer see them around much.
Some of us have been ill for decades, and for us the improvement is slower, but still possible. I've been ill for over 40 years, but have improved with treatment.
Your treatment will probably take less time than that because you haven't been ill as long.
quote: I have constant headaches, dizziness, and heart/chest pain.
Those are all normal symptoms. Here is a comprehensive list of Lyme Disease symptoms.
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 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
quote: I currently take rozerem and Ambien CR for sleep, which could add to the dizziness.
My guess would be that those are simply Lyme or co-infection symptoms.
quote: I suspect I have had lymes for 2 years. Should I be taking more than 1 antibiotic and for longer than 3 wks?
First, it is Lyme, no "s" at the end.
Even if you had just been bitten, the minimum treatment time should be 6 weeks. At two years you will need much more than that.
The first thing you need to do is find a Lyme Literate MD (LLMD). These are doctors who are specially trained to treat Lyme and other tick-borne infections (TBI's). Most follow the ILADS treatment guidelines.
You can do that by going to the Seeking A Doctor Forum here and posting the state and large city nearest to you.
You need a doctor who is a specialist to treat this complicated disease. Do not go to an Infectious Disease doctor. Most of them are not correctly informed about treating Lyme and co-infections.
quote: I am only 34 with 3 children and feel like I will never get better.
There is no reason for you not to improve. But you do need to have a LLMD treating you.
quote: I have anxiety everyday and the constant worry is killing me.
Anxiety is quite common with Lyme. Most of us can relate to how you are feeling now. I know I've been there.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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I think seeing a LLMD is a really good idea. Many doctors, regular PCPs are not familiar with Lymes disease and it's co-infections.
Do to the "Seeking a Doctor" on this main menu.
Post your inquiry for Minnesota and a general area, ie: south-western part, or the county - something like that.
Someone will respond and Private Message you.
Try not to get too upset about this. Remember Lymes thrives on stress - don't make it earier for the disease.
People DO get better, but then they leave this site and get on with their lives.
Who can blame them?
But while you are in treatment - you will be in good company - with people who understand the illness - and frustration!!
Much luck and Blessings to you! Peedie
Posts: 641 | From So. CA | Registered: May 2008
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bettyg
Unregistered
posted
welcome stefanie; glad you found us!
you've posted in seeking dr. and i will head over there as time permits to help you there too.
please go back to your 1st post and edit it breaking it up into SHORTER paragraphs; instructions are below.
i also offer you my newbie package below...info galore!
WELCOME, would you like a FREE copy of my newbie package of 124 pages info galore sent by LYMENET'S PRIVATE MESSAGE system here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you!
**********************
Also, if you are needing a LLMD, LYME LITERATE MD, please post on board in SEEKING DR. forum. Go to FORUM HOME, right corner click, and then chose seeking dr.
We ask that ALL members post in seeking dr. and START THEIR OWN ``NEW'' POSTS vs. adding on to someone else's because we can NOT keep track of who has been answered and who NEEDS to be replied to ok!
Many of you have been sending me a private message asking for llmd names and have NOT posted on the board. I require you to post online because when you show the state and largest cities nearest you; others from YOUR STATE WILL JUMP IN and give you the MOST CURRENT info that they have.
We have nationwide lists do NOT have most current info! We do what we can, but we depend on members to share all updates, deletions, phone nos. not working or changed, etc. with us. Then we let the others know promptly who have lists!
So thank you for starting YOUR OWN POST in seeking dr! We/I will help you as much as possible over there! Betty *******************************************
When you post or reply, please break up your solid, continuous block text
welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy.
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. ![[Frown]](frown.gif)
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