This is topic Newbie here! in forum General Support at LymeNet Flash.


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Posted by olympia (Member # 7548) on :
 

Hi everyone!I've never posted in a forum before-really a newbie,so I hope I've done this all correctly-But I'm not new to lyme disease-My knee swelled up in Jan.-Doxy tabs didn't work- By March the leg was so bad I was in a wheelchair and I.V. rocephin-In physical therapy now to learn to walk again-I can relate to all of you who have been through so much-I've been really scared-next is a lumbar puncture-I've had possible neurological lyme symptoms for many years.Has anyone had one and can tell me about it?My best wishes to all of you-Olympia
 
Posted by Linda LD (Member # 6663) on :
 
Olympia,

WELCOME!

If no one answers any time soon, then post over on the medical side.

I am so glad you are here! There are a lot of great people with wonderful insights and understanding of this complex illness.

Linda
 


Posted by tabbytamer (Member # 3159) on :
 
Hi Olympia,

Welcome

I've never had a lumbar puncture test, I have heard that it can still be difficult to find evidence of Lyme bacteria even with a lumbar puncture.

You're in the right place, for sure. A lot of us have had Lyme for many, many years and have neuro problems because of it.

Glad you found us!

------------------
Tabby


 


Posted by bg (Member # 46416) on :
 
Olympia,

Lumber puncture...go to medical area and search screen by screen using the numbers at the bottom 2-65. Someone has recently posted about this subject.

Welcome to this 24/7 educational & support group board!

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.
print & read Dr. Barrascono's info first; you will come back to this often.
==================================

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 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!

Bettyg
 


Posted by treepatrol (Member # 4117) on :
 
Heres ya go

Newbies List 07/01/05

WELCOME To LYMENET


How to Post what where explanations
Posting

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

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
Co-IinfectionsThanx M

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


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
Q-RIBb
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

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

Transmission Art Doherty

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

Looks like like they killed this one hmm Blood Supply

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

Good Site Canadian Lyme Disease Association
FDA on Lyme Testing

Legal Help
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

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


Female Related Problems

Tin Cups Pregnancy & Lyme Update 5/24/05
Female Issues
Unplanned Pregnancy
Pregnancy
Pregnancy?
TC Link Pregnancy
Insurance
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
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

Interested in what Trolls are?
1.

2.

Remember This
Rules
Success Stories
Success Stories
Chat
LD Chat Room Links
Spirochetes Pics Link
SPIROCHETES FORMS 1
SPIROCHETES FORMS 2
SPIROCHETES FORMS 3
SPIROCHETES FORMS 4
Conspiracy Theories
US Patent Pathogenic mycoplasma
CDC CITATIONS
Citations


A copy of this is stored in computer Help section.

Newbie Links

Tree's Flash

Updated 07/01/05

 


Posted by Lymetoo (Member # 743) on :
 
Personally [just my personal preference] I would never have a spinal tap unless my life was in immediate danger.

A spinal tap is only 20% accurate for Lyme testing. Do you know why your dr wants to do one????

Most LLMD's will not use them unless something is not adding up neurologically.

Ask questions before submitting to this!

------------------
oops!
Lymetutu
 


Posted by Michelle M (Member # 7200) on :
 
Hi Olympia, and welcome!

So sorry about your knee... Sounds horrid!

More history is in order, in order to understand. :-)

Are you current treating for Lyme, or a past treater?

The lumbar puncture is "do-able" but deciding to do it depends on what the point of it is! Some non-LLMD docs really don't realize how futile it is to try and find Lyme in CSF fluid (tho luckily many on our board HAVE!).

However, maybe in your case they want to rule out other neuro issues?

Anyway, MORE about you...? Tell ALL!!!

and WELCOME!

Michelle M


 


Posted by lymeloco on :
 
quote:
Originally posted by olympia:

Hi everyone!I've never posted in a forum before-really a newbie,so I hope I've done this all correctly-But I'm not new to lyme disease-My knee swelled up in Jan.-Doxy tabs didn't work- By March the leg was so bad I was in a wheelchair and I.V. rocephin-In physical therapy now to learn to walk again-I can relate to all of you who have been through so much-I've been really scared-next is a lumbar puncture-I've had possible neurological lyme symptoms for many years.Has anyone had one and can tell me about it?My best wishes to all of you-Olympia

I had a lumbar puncture 5 yrs. ago.
Unfortunately, the last part of my test got lost!

I wouldn't go for another one after I read that rarely you'll find lyme in the spinal fluid.

It did not hurt. Just felt pressure!
The neuro. did it at the hospital.

He had me sit up, and lean on one of those hospital talbes, with my head laying on my
arms.

This duck is the one that lost the test!
He runs an m.s. clinic.

I have neuro. symptoms also. Have had problems for years. I feel great right now, and tired from weeding and mulching!

If you need any other questions answered, don't hesitate to write.

If you do have the test. Make sure they give you something to drink, and have you lie down for at least 30 min. before going home!

Some people experience headaches, but I didn't!

Again, if you have anymore questions please let me know.
I need to go take a shower, I worked up a sweat! Take care, lymeloco


 


Posted by docdave130 on :
 
the lumbar puncture is not a pleasant experience. they give you lidocaine aroung the site and use a catheter to get the spinal fluid. should be done in a hosptial of surgical facility with xrays available.
they can do a pcr on lyme which if positive is positive for lyme because it is a dna test. the problem is there has to be active lyme in your spinal fluid and its not a disease like hepatitis where the cells are in great quantity, so if the sample has cells it will be positive.
the reason they do lumbar punctures in neuro patients is to rule out multiple sclerosis. this does show up in the spinal fluid and treatment different.i don't know if there is another test to rule out ms and the symptoms are almost identical


 


Posted by Kara Tyson (Member # 939) on :
 
�������!
 
Posted by Lymetoo (Member # 743) on :
 
quote:
Originally posted by Kara Tyson:
�������!

Kara,,,,did you just sneeze??

------------------
oops!
Lymetutu
 


Posted by janet thomas (Member # 7122) on :
 
Yes, please tell us your history-

Are you on abx (antibiotics) now? What, exactly.
 


Posted by Kara Tyson (Member # 939) on :
 
Lymetoo,

I tried to use my Greek letters, but LymeNet had no idea what I was saying.

It said..Welcome.

I might have also sneezed!

[This message has been edited by Kara Tyson (edited 02 July 2005).]
 


Posted by Lymetoo (Member # 743) on :
 
Olympia...where are you??


Kara....

------------------
oops!
Lymetutu
 


Posted by Biting Back (Member # 6018) on :
 
Welcome! The lumbar puncture is pretty unreliable. That being said, my advice is to be as still as possible while they're drawing spinal fluid.

I didn't find the procedure itself to be painful but you may get a horrible headache afterward. Be sure to follow the doc's instructions closely after the procedure to try and forego the headache.

So sorry you had to find new friends here, but WELCOME!
 


Posted by olympia (Member # 7548) on :
 
Dear New friends-
I hope you don't mind the late reply to this message-
finaly catching on.

Thanks so much for your kindness_I'm so happy to have found you all-people I can relate to

I'm also a bit slow on the uptake sometimes-"brain fog" you know- anyway as they say-"It's Greek to me"In this case you.
I forget sometimes that Olympia is usually seen as a Greek name-My grandmother,Olympia was actually born in 1900 in the Austrian controlled
portion of the Ukraine.

Her father's name was Dimietrius-Also Ukranian-The humor went over my head.Or a bit South if you will(in Europe that is)-appreciated but oops I missed it.

I have had a curiosity though about heredity and how it might play a part in immune systeme response to antibiotic treatment of lyme disease, so the information sent was also appreciated and not too far "north" over my head (ha ha) Although maybe too far west in heredity-

Would enjoy more info. on the subject.My dr. has discussed the possibility of another round of I.V. treatments for 9 weeks and I'm a bit apprenhensive about it.If there is actual proof that certain geneic profiles resist antibiotic treatment-ooops

Maybe at this point as a newbie to all of this I'm just unsure of alot of things-

Thanks for "listening to me babble on
Olympia

 


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