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» LymeNet Flash » Questions and Discussion » Medical Questions » Newbie where do I start?

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Author Topic: Newbie where do I start?
humeaft
Junior Member
Member # 7687

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Hi
I was diagnosed with Lyme Disease last Summer I do not know how long I have had it but my MD at time told me I had 'significant" case of it. I live on a farm on a salt marsh in coastal Ma so who knows when I got bit or how many times
I went to doctor with numerous chronic pain coplaints- more in muscles than bones, amd overwhelming fatigue I am unclear as to the meaning of my lab results except that both this doctor & my PCP felt it was more than a mild case I was given 4 weeks of oral Doxicillin & when retested 4 -5 months later was "negative."
But... I have lots of bothersome & sometimes very painful; symptoms. Pain continues sometimes focusing in on specific place or joints- Major neck pain for past 2 weeks I have horrible episodes of sweating- really soaked for no reason- not a smelly BO smell- (thank goodness!) but waterworks I kid that my thermostat is out of order. Even though the follow up test was "negative" can this still be from Lyme? The biggest issue beyond pain is fatigue- This from a Type A personailty person who has a very active lifestyle- own & train horses & ponies, live on a farm work with dogs & patients in a hospital Sometimes I have to make myself put 1 foot in front of the other to walk to the barn I hate this feeling but would feel better if I had some support or anwers I have a follow up appt at a rheumatologist next Weds Any advice??

Posts: 1 | From Rowley Ma USA | Registered: Jul 2005  |  IP: Logged | Report this post to a Moderator
liz28
Unregistered


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Do a Lymenet search on a guy named Treepatrol--he regularly posts weblinks for newcomers.

As you will see from reading Lymenet, there is a lot of... ah... dialogue on the many approaches you can take. These different opinions have become even more pronounced in the past few months, because there are a lot of new antibiotics on the market, and people's experiences can vary widely, depending on when they started treatment.

One of the most helpful actions you can take is to read through as much of this board as possible and memorize every smidgeon of information that you can. The more you know about what is available to you, the faster you will find the best doctor, and the less money it will probably cost you to get well. If you know the different treatments, you may also be able to request them from a doctor who does not specialize in Lyme (referred to on this board as LLMDs) but who is sympathetic to your situation.


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treepatrol
Honored Contributor (10K+ posts)
Member # 4117

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Newbies List 07/27/05

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

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
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.
3.Sorry to See it
4.Sorry to See it Happening

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

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
Tree's Flash

Updated 07/27/05


Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
Lisianthus
LymeNet Contributor
Member # 6631

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Hi Humeaft,

The night sweats your having are a common symptom of Babesia. Your Dr. probably didn't test you for that. It is a co-infection with Lyme. The tests for it are not reliable. Because there are hundreds of strains of babs, and they can only test for two of them. They have to go by symptoms.

If your doctor is unfamiluar with Lyme disease he/she will not know how to read your "negitive" test. Your dr. probably did an Elisa test for LYme which is 70% inacurate. He/she needs to do a Western Blot to see what bands come up. Their are certain bands that are specific to Lyme. In other words your test can be neg. but you can still have Lyme!

BTW- four weeks of doxy isn't enough to kill the lyme bacteria, because of its life cycle. You will probably need a Lyme Literate Medical Doctor (LLMD) It is usually a waste of time seeing other doctors.

Treepatrol gave you alot of good links read through them. Become informed.

Good luck,
Lisi

P.S. In the future, for us chronic late stage lymies can you please break up your writing into small paragraphs, its easier for us to read. TY


Posts: 986 | From Michigan | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
DBag
Member
Member # 7567

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Hello humeaft;

Welcome to LymeNet. Your story and mine match exactly. I am a farmer in CT who has just gone through the exact same thing as you with the exact same symptoms.

My Elisa test has been negative for the last 15 years but my Western Blot is always at least "mildly" positive depending on whose interpretation you are using. I have had Lyme and been treated every year for the last 15 years. At the moment I am on IV Rocefin, it took me over 6 weeks to convince the Doctors what was wrong with me this time, and it was a long and miserable 6 weeks.

I know exactly how you feel about going to the barn, I actually had to start driving my truck out there. I would suggest that you ask your doctor to do a Western Blot and ask that a copy of the results be sent to you. Dr.D in Boston says if you have any reactive bands at all then it is positive and requires treatment, particularly if you are having the symptoms that you are having and I am living proof of that.

I am feeling much better on the IV although my joints are still giving me trouble and I am still having headaches, but not as bad as before.

I took the literature about how to read a Western Blot written by Dr. D to my doc and showed it to her. I think that ultimately may be what convinced her to try this treatment. The 2 bands I had that were positive are specific only to Lyme. Also the CDC recommendation of how to read a Western Blot is flawed and was never intended to be used for a diagnosis, unfortunately many doctors don't know that.

I am seeing a rhuematologist next Tuesday to have my joints evaluated.

I want you to know that you need to trust yourself enough to stand up for yourself until you get treatment. I am also a Type A and that contributed to the doc's listening to me because I was so pitiful and unlike my normal self. If you can't get this doc to listen to you find another one and keep looking until you get help.

There is very much we don't know about tick borne illness and you will need to find a doc who is willing to admit that and who will really listen to you. Use all the links and resources on this site, they are invaluable.

Good Luck and Keep the Faith!

------------------
Deb :>)


Posts: 26 | From East Hampton, CT, USA | Registered: Jul 2005  |  IP: Logged | Report this post to a Moderator
bg
Junior Member
Member # 46416

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hume,

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
http://www.lyme.org/otherdis/ld_symptoms.html - LYME SYMPTOMS

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!
*
Bettyg, Iowa
=============================================
The WESTERN BLOT IGM & IGG blood test nos. 189 and 188, are the only accurate tests for LD. They should only be sent to these 3 USA's Lyme testing labs:

IGENEX LAB:
797 San Antonio Road
Palo Alto, CA 94303
1.800.832.3200.

(If the early test, called IGM, is negative; the later test IGG is NOT done!)
Please see their web site: www.igenex.com for their current prices effective May 1, 2005 and

to print their REQUIRED form, which MUST be signed by the doctor, DIAGNOSIS CODE NO. COMPLETED!; Medicare's UPIN no., and your blood taken EARLY in the week so it doesn't sit in post offices!

Write on their forms you want results FAXED to their drs. Office; snail mail paper copy so it's not lost like mine was!

NON-Medicare patients must PREPAY by check or credit card for the tests since they do NOT handle insurance papers.
Medicare patients do NOT have to prepay!
7-24-05...CALL 1ST ABOUT MEDICARE; just read today someone having troubles w/medicare paying!

2. MDLabs from NJ, www.mdl.net
see their site; they too require their own form. NO prices are listed; you must call their 800 no.

3. BOWEN labs from Florida, www.bowen.net 727.937.9077
You pay $250 tax-deductible payment for testing, and they send you a picture of what shows up in your blood. You also get the results within 24 hours after the blood is received at Bowen. They are also a 501(c)(3) lab and you can take the donation of $250 off of your taxes if you live in the US. They fax the results and then about a week later send the actual pictures.
Lyme should be diagnosed clinically using medical history in addition with the Western Blot blood tests as no currently available test is definitive in ruling-in or ruling-out infection with Ld pathogens, or whether these infections are responsible for the patient's symptoms.

NOTE: Please send a copy of your health insurance card to YOUR insurance comany (mine is Wellmark BC/BS, Iowa) for them to submit to BLUE CARD (handles other states) them to FORWARD to California's Blue Shield health insurance company since they will require that, DRS. Diagnosis Code No., and which date of service is correct (IGX has 3 different dates on their paid receipts....use the DATE OF ACTIVITY!).

FYI - mine was returned to me after 6 wks. After submitting; dr./blood lab failed to show DRS. DIAGNOSIS CODE NO. on their form! It went to 7 people to be returned to me! Disgusting!

bettyg, Iowa


Posts: 1 | From US | Registered: Aug 2015  |  IP: Logged | Report this post to a Moderator
Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939

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Learn more about testing. A negative test only means you are not making antibodies, it doesnt mean you are not infected.

Also, it matters which lab was used.


Posts: 6022 | From Mobile, AL | Registered: Apr 2001  |  IP: Logged | Report this post to a Moderator
   

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