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» LymeNet Flash » Questions and Discussion » General Support » Newly diagnosed...now what?

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Author Topic: Newly diagnosed...now what?
jerseyRN
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Ok, here goes.
I was feeling under the weather last Sunday. I got a stomach bug from my daughter, which subsequently spread to my wife and the in-laws.
The bug lasted 48 hours, and everyone got better.... except me.
I still had a splitting headache. I was living on tylenol with very little relief. The headache was directly behind my eye, and wouldn't go away all week. At work thursday, I suddenly began having a tightness in my throat. It felt like my epiglotis was swollen. Along with this I was getting a killer neck-ache. It felt like whiplash. I immediately thought I was having an allergic reaction to something. I took benadryl, but it didn't help. I started running a low grade fever about 101. I was breaking out in sweats. Started to panic because I was having trouble swallowing.
I went home and my wife (also an RN) checked me out and couldn't see any swelling in my throat. I decided to try to sleep it off. When I woke up, I couldn't swallow my own saliva. The headache was worse than ever. and I was running a fever again.
So off to the E.R. I went.
The P.A there reviewed my symptoms and did a strep test. (came back negative).
At this point he asked me the weirdest thing...."do you have a rash"
I immediately said no, but then I thought about it. I had what had looked like a very large, but minor bruise on my leg (it was large, but just slightly dusky blueish red, barely there, but it had a 1/2 inch red border around it, but it was WARM to the touch) I had originally thought that I must have banged it pretty good or gotten it from my 2 yr old daughter somehow and not remembered.....she does like to fling herself around
So i had thought bruise....my wife had thought jock itch.
I tell the P.A this and he says "let me see".
He takes one look and says "That looks like a lyme rash. I'm going to do a lyme titer and start you on antibiotics. I'll start you on ceftin, that would treat either the lyme or the pharyngitis....this way you are covered.....follow up with your primary"

So long story short, I go to my primary, he says...ok, continue the ceftin, stay home for a week, and we'll see how it goes.

I just found out that the lyme titer came back positive, so I am sure that is what's going on.
My question is.....now what?
is ceftin any good for lyme? how long am I looking at being under the weather? I still have the swelling in my throat and my neck is killing me. I can't shake the headache, I get chills and sweats, and my legs ache when I try to sleep.
I am just trying to figure out what happens now...I have a 2 year old and another on the way.
There is just so much info here I can't keep up with it all, I am so drained. I' went from sleeping 6 hours a day to about 18 hours a day.
Any help or advice would be greatly appreciated.
Thanks


Posts: 3 | From dover, nj usa | Registered: Aug 2005  |  IP: Logged | Report this post to a Moderator
beach4so
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jerseyRN,

Welcome to Lymenet. If you go to the Medical section there is a post that says "Links for new members". It has all the info you could ever want.

I wish I new how to put the link here for you, sorry I am just learning this stuff.

Hope you start feeling better soon.
Starr


Posts: 698 | From Louisiana | Registered: Apr 2003  |  IP: Logged | Report this post to a Moderator
DJP
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Here is the link beach4so was talking about:
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Find a Lyme Literate doctor (LLMD)- Click on Flash Discussion then Seeking a Doctor or Click on Support Groups.


Posts: 441 | From USA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
NP40
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The good news ? You caught it early. The bad news ? Few GP's know how to treat it properly.

Most underprescribe abx for lyme, it goes dormant for a while, then comes roaring back at a later date. The problem ? It can then be diagnosed as MS, lupus, CFS, etc., when in reality it's lyme. Here's a good start on treatment.
http://www.guideline.gov/summary/summary.aspx?doc_id=4836&nbr=3481&string=lyme
http://www.ilads.org/guidelines_summary.html

[This message has been edited by NP40 (edited 17 August 2005).]


Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005  |  IP: Logged | Report this post to a Moderator
jerseyRN
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Thank you for all of the information. Now I guess I just need to spend some time reading. Those links are helpful. I will check them out in depth tonight.
Posts: 3 | From dover, nj usa | Registered: Aug 2005  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
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Just wanted to add -- Glad you are getting treated. You have come to the right place to get all your questions answered.

Be sure to get copies of all medical records and if the rash is still there it might be a good idea to get photos -- may be needed for insurance documentation at a later date. Be sure to write the date on the back of photos.

It would probably be a good idea to start a journal. Note your symptoms and meds on a daily basis. Over time you should be able to track your progress. This also could help your LLMD determine if you are suffering from a coinfection.

Most Lyme patients have additional tick-borne infections -- babesia and bartonella are most common. These coinfections require a different treatment than the Lyme and that is why it is especially important to see an LLMD.

The one supplement you should start immediately is acidophilus. This is needed to prevent candida/yeast from the use of long-term antibiotics.

Bea Seibert


Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
pq
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JerseyRN,

Welcome to Lymenet!

Ceftin was an excellent start, with one probable rationale being mixed skin pathogens, based on visual characteristics of the rash.

ceftin does not cross the BBB though.


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treepatrol
Honored Contributor (10K+ posts)
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Newbies List 08/11/05

WELCOME To LYMENET


How to Post what where explanations
Posting
Remember This
Rules LymeNet.Org Webmaster
Rules
Here's more goodys! A typical response to newcomers.

Page 1.

Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. "Lyme literacy" means, first and
foremost, knowing how to diagnose the disease accurately. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
Lyme Disease symptoms 2005
Lyme Symptoms 2005
Post for a LLMD in
Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
Support Links LLMD's

Lyme State Info Cheryl's
Why we Don't Use Dr's Names Here

LYME DISEASE TREATMENT & DIAGNOSIS
Cheryl's LDT&D
Lyme Disease Misdiagnosed As ...
Art Doherty Misdiagnosed
Art Doherty Lots a Links


Conflicts in Lyme

How to Search Courtesy of Danq
TC LymeNet Links for New Members
TC 50 Questions

TC Warning To Posters

Lida Mattman

BorreliaBrain Letter
DISEASE INFO - COINFECTIONS

Page 2.

Newbie's Lingo

Links for family members

Lyme Disease Audio Network
Dr B's Treatment Guidelines

Dr. Joseph J. Burrascano's Treatment Guidelines
CDC Website on Lyme Disease
International Lyme and Associated Disease Society
Lyme Symptoms
Lyme Disease Symptoms PDF

Lyme Disease Symptoms
Rashes
Tick Pictures Graphic
Tick Pictures

Co-IinfectionsThanx M
Symptoms & Associated Conditions

Rose's 15 Facts for Newcomers
Making the Most of Your LLMD Visit
Camp A and Camp B, The Lyme Disease Contoversy
2nd Version Camp A Camp B
Citations for Underreporting CDC


MP Controversy
MP 2
MP 3
MP 4

Why You Can't Trust Medical Journals Anymore
Something to share with friends and family members But You LOOK Good!

Labs
MDL
Igenex Labs
Bowen Lab
Bowen Lab Forms Protocol

Western Blot Info

FDA It is important that clinicians understand the limitations of these tests

Explaining Borreliosis (Lyme) Western Blot Tests
Explanation of Western Blot Bands
Igenex Labs on the Western Blot
Melissa Kaplan's Lyme Website Explains Western Blot
Dr. C Explains Western Blot
( 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.
- = Not Present
+ = Low
++ = Medium
+++ = High
+/- = Equivocal = Indeterminate its there but not as intense as low) )

See this ( . )thats the size of the larva stage tick...
Next nymph size... ( * )
Next is adult ( o ) to ( 0 )
Pretty small????? HUH

Western Blot
Blood Brain Barrier

ABX `s Cross Blood Brain Barrier
Blood Tests Meanings

Blood Tests Meanings

Page 3.

Flagyl,= List of ****dazole's that I have found
Cyst's Treatment
ABX= Antibiotics
Antibiotics Poll
Abx's Poll
Flagyl" by Martin Atkinson Barr
Nitroimidazoles

Drug Interactions and Other Drug Info
Drug Digest & Interactions
Drug Interactions
American Medical Women's Association
Tiscali Reference Encyclopedia


Herxing
What Is a Herxheimer Reaction?
What Is Herxing?
The Herxheimer Reaction

Herxheimer Reaction Explained

Candidiasis

Quote Lida

Ilads

Yeast Problem Diet too
Oral Yeast
Oral Yeast
ZIPZIP Thanks

IntestinalFlora

Parasites
Put word Diarrhea in Search
Morgellons
Infestations
Lyme Parasite or Bacteria?

More Tick Disease
Infections by Bugs Ticks Mosquitos Lice Etc
Infectious Disease List

Coinfections 1

Coinfections 2

Bartonella Rash's

RMSF

RMSF Tree

RMSF Spotless=HME

Tularemia
Tularemia

Tularemia Rabbit Fever

Mycoplasmal Infections
Mycoplasmal CDC

Mycoplasma

Autoimmune Debate

Mycoplasma Treatments

Alzheimer's

Elderly Alzheimer's

ALS

Another Story

Lou Gerhrig's ALS

Lida M
Good Article ALS MS And More Etc
Good Article ALS
ALS
Lou G ALS
M S
MS
Danette MacDonald
I'm not giving up
ALSO trigger MS
Lyme a hidden danger
The saga continued
Tom Grier
Links

Lupus Lyme
Lupus Lyme Misdiagnosed
Lyme Disease Misdiagnosed as Fibromyalgia
Fibro Lyme

Lyme Misdiagnosed as other disease's
Lyme Disease Misdiagnosed As ...
CFS CFID
CFS CFID
CFS

Page 4.


Garlic Proper way to eat it
Garlic

Check Diet Link Atkins Diet

PORT-A-CATH (catherter)
Abx's Port

Prolotherapy

Transmission Lyme
Transmission Fleas Mosquito's Food Etc
Transmission Etc
Black Flies & Lyme
Transmission Art Doherty

Sexually Transmitted ???
Transmitted Through Sex?
Sex Question-Serious-Adult Content

Looks like like they killed this one hmm Blood Supply, Its back!

Video On Demand: Blood Supply May Be Source Of Lyme Disease Infections

Good Site Canadian Lyme Disease Association
FDA on Lyme Testing

Legal Help
Lyme Literate Attorney's PA
PA

InsuranceLaws
Medical Records Privacy
Search Drs Background

Link1
Link2
Search Dr's Backgrounds link


Legal Help
Legal Help
Legal Help
Legal Help
Legal Help

MatthewGoss Site
GreatSite
MedicalDictionary

Cheryl's Site

MorphologySimplified

Tonsils crimson crescents

Killing Lymphocytes By Spirochetes

Wealth of Info

Support
USA Support

SupportGroups Canada
Canada SupportGroups
Associations, Foundations, and Support by Country


Marnies...... Ten Points Regarding Mg and Lyme Disease
In a Nutshell P1

In a Nutshell P2

Part1 Long over Due
Part2
Part3
Part4
Part5
Part6
Part7

Updated in a Nutshell
For My Friends

Canlyme MAG
Silver Discussions
Silver Treatments
Tom Grier on Silver
Grier

Articles By Tom Grier
NMDA Receptor Lyme Brain
Great Article Below
Microbiology Tutorial
Help Free
Help with Meds
Help! Free Meds
Vitamins you should Know
Tests Synonyms Guide
Lab Tests Looky
You can get your medical record for free once a year from the Medical information Bureau(MIB) if company participates
MIB

Melanie Reber

Coping with Financial Burdens

Blood Donor Info
Pain Info
Pain Info
German physicist March 1999 Interesting

Female Related Problems

Tin Cups Pregnancy & Lyme Update 5/24/05
Female Issues
Unplanned Pregnancy
Pregnancy
Pregnancy?
TC Link Pregnancy
Insurance Help
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Insurance SS Disability Help Minoucat Bunches of Goody's
Permethrin
How to apply Permethrin
How to apply Permethrin Pic
Permethrin Site
Discussion on Repellants
ALDF Four Poster Coup
Tick Testing
Tick Testing
Herbs
Heb Site

Herbs Be Careful
HerbsCancer Center


Psychiatric Lyme
Fallon & Tager Report
Duramater NeuroPsych Info Kids&Adults
Neurologic Lyme
Neurologic Lyme

Dirty Truth
Sporadic Schizophrenia
Psychiatric Manifestations
Columbia Lyme
Schizophrenia & Lyme Disease
Sunra links

Page 5.


Scans & How they Work

How Cat Scan Works

How PET Scan Works

How MRI Works

How XRAY Works

How UltraSound Works
Explains LD50 Chemicals Toxicities
MSDS SITE
Silver
Ionic Silver Patent Discussion


Interested in what Trolls are?
1.

2.
3.Sorry to See it
4.Sorry to See it Happening
pq's Article on Trolls

Success Stories
Success Stories
Chat
LD Chat Room Links
Spirochetes Pics Link
SPIROCHETES FORMS 1
SPIROCHETES FORMS 2
SPIROCHETES FORMS 3
SPIROCHETES FORMS 4

Movies on Lyme
MovieLink1
MovieLink2
MovieLink3
MovieLink4
MovieLink5 18mgBig
MovieLink6 52mgBig
MovieLink7 70mgBig
MovieLink8 Fast3mb

Polls here on everything

Gallbladder Loss Poll

Conspiracy Theories
US Patent Pathogenic mycoplasma
CDC CITATIONS
Citations


A copy of this is stored in computer Help section.

Newbie Links
Post in the appropriate Forums


Updated 08/11/05


Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
Kara Tyson
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Welcome,

First things first...when researching about Lyme, forget the Merck Manual--throw it out. What is written in that book is at the least out of date and at the most knowingly innacurate.

Check out some European Lyme Organizations, such as ILADS, to get information.

Sorry you have this...but you are fortunate. Most people on here went years without any treatment.


Posts: 6022 | From Mobile, AL | Registered: Apr 2001  |  IP: Logged | Report this post to a Moderator
Kara Tyson
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Oh, and you also need to be tested for other tick borne illnesses.

If you test positive for Babasia, your state may require that RN's be on a registry.

Also, please DO NOT donate blood. The Red Cross somewhat has a dont ask dont tell policy. They wont take your blood if you are infected with Lyme, but they dont ask on their forms. Unfort. there are Lyme patients who have donated their blood.

[This message has been edited by Kara Tyson (edited 18 August 2005).]


Posts: 6022 | From Mobile, AL | Registered: Apr 2001  |  IP: Logged | Report this post to a Moderator
Linda LD
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I'm sorry to tell you this--but you may want to have your kids and wife tested. My doc thinks you get the rash because you have been exposed before and your body recognizes it is allergic the second time.

Maybe he is wrong but that is what he told me.

I gave both my babies Lyme through breastmilk or invitro--also you can give it to your spouse sexually (imagine llaine on Seinfield saying it).

Good luck--it is a lot to think about.

L


Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
bg
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Jersey,

Welcome to this 24/7 educational & support group board, www.lymenet.org !
Here's TREEPATROL's and TINCUP'S combination newbie links.
http://flash.lymenet.org/ubb/Forum1/HTML/029917.html

Print off the links then check them off as you read as you could spend several months reading all of this. Treepatrol constantly adds new links as they become available from the members here.

print & read Dr. B's (a lyme literate MD) info first; you will come back to this often.

Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful!
http://www.lymeinfo.net/lymediseasetreatment.html

Some guidelines from Betty/others on using this message board:

* Do NOT use all caps when posting; it's hard on our eyes. But I know one of our members has macular degeneration, and all caps is what she can see & read so exceptions like this are acceptable for good reasons.

* We chronic, late-stage lymies can NOT read long paragraphs. So please limit your paragraphs to 6-8 lines max of text and double space between paragraphs.

* You can EDIT your text comments anytime. You can NOT edit your subject line so please make it as specific as possible instead of ``help, question'' etc. in order to have more readers/replies in trying to assist you. There are between 30-40 NEW/replies to post daily so we can't read all the posts on our limited time here...thanks for understanding.

* If you use the ``quote'' icon, please DELETE [B] bold at the beginning & ending of the quote. This makes it easier on our chronic, late-stage lyme eyes.

* To just reply without quoting, go to the top or bottom of screen in the black & white area to reply or post a new topic. Many of us couldn't see it when we 1st started posting. Thank you for helping us all out!
*
* LYME SYMPTOMS - http://www.lyme.org/otherdis/ld_symptoms.html
Bettyg, Iowa


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