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Author Topic: new here
llamaring
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HI. I'm new here. I'm Leslie. I was diagnosed with Lyme Disease back in December when a rash on my leg had grown from a small area to taking over my entire thigh. Other than that, I had no other symptoms whatsoever. I was treated for 3 weeks with Amoxycillan, and then the doctor said "oops, I should have put you on Doxy." So I took Doxy for 3 weeks. I finished the medicine at the end of January. Since that time, I have lost 15 pounds. I did start exercising more and I changed my diet, but only very little. Over the past few weeks, I've started to feel whacky, loopy; I really don't know how to describe it. I feel very moody. I'm normally happy all the time but all of a sudden I'm starting to feel sad easily. I was bitten by a deer tick when I was down in Georgia (I live in Mass.) a month ago, but no rash appeared there. I'm just curious about relapses. Are they common? Have any of you experienced them? I don't feel sick at all. I'm tired, but I attribute that more to my late hours at work. It really could be nothing, but I wonder if I should go to the doctor again. Can they retest me for it or will I always test positive due to the presence of antibodies?
I'm not sure I've asked all the questions I have so if you have any info or advice please feel free to post it.
Thanks so much!

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lookin4answers
LymeNet Contributor
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Hi Leslie, and welcome to lymenet.

I would say that relapses are very common, so are co-infections of lyme.
I am not sure how the antibodies work once infected, wouldl like to read the response to that myself.

I am always learing something new here.
If you ask for another test, have him test you on IGg and IGm Western Blot. Please insist on sending it to Igenex or Bowen labs....I believe that Igenex would be the best choice.

These test are more reliable and test more bands specific of lyme.

I am sure that someone will post you some more links as I do not have them handy. Sorry.

Take care and keep reading.....the medical forum should be up sometime tomorrow.

Amanda


Posts: 688 | From SW Arkansas | Registered: Dec 2003  |  IP: Logged | Report this post to a Moderator
rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001

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Good morning, llamaring, and welcome to LymeNet.

Yes, if is very possible that you did not get rid of Lyme Disease (LD) on your first go-round.

Only about 50% of all infected with LD actually have a rash, of any kind. So, when you were bit in Georgia, you could very well not only have been re-infected, OR you could have been given it all over again. Did that make any sense?

Pain and Fatigue are tied for #1, of the complaints given to my Lyme Literate Medical Doctor (LLMD) by his patients. So, don't just brush off the fatigue as just getting older or working harder. Fatigue is a MAJOR symptom of LD.

As far as your mood is concerned, LD will affect that as well...very common.

You appear to be in that first golden year of being infected. Therefore, if you can get to the proper doctor (an LLMD), and get treated with a high enough dose of antibiotics, and for a long enough duration, THEN YOU HAVE A VERY GOOD CHANCE OF LICKING THIS quickly before it goes into the chronic phase where it is much harder to treat.

As for your symptoms, or, your lack of symptoms, your own immune system can and does plenty of time, keep the more pronounced symptoms at bay.

The absolute very best advice that can be given to you is for you to get into see an LLMD as soon as possible. Lyme is very complicated and often misunderstood disease that your average doctor does not understand, much less how to treat.

You can go over to the Seeking a Doctor forum and post for an LLMD in that forum.

As you probably know by now, LymeNet is experiencing some difficulties in getting into the Medical forum where the most posts are posted. But, be patient, it will be up again soon, I'm sure.

Also, I'd like to give you a link, a very important post, that you'll want to read through and bookmark so you can refer back to it again and again as you learn about this most complicated disease. Tincup's Links for New LymeNet Members:


http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Most regular doctors will not send out your blood for the Western Blot testing without first doing an ELISA and then only if it is positive, (which it (the ELISA) is NOT positive the majority of the time whether you have LD or not). And, they probably will not send your blood, if they get to the point of the WB, to a lab that tests all the specific bands for LD.

There are only a few labs that will test for all the bands and most LLMDs use www.igenex.com for their WB testing.

I may not have answered all your questions, but, the ones I did not will be found, along with the answers to the majority of any questions about LD, in the above link of Tincup's. And, others will be by shortly to answer questions and welcome you to LymNet.

Again, welcome to LymeNet Leslie, glad you found us,

Rosemary


Posts: 6191 | From Arkansas | Registered: Jan 2002  |  IP: Logged | Report this post to a Moderator
cbb
Frequent Contributor (1K+ posts)
Member # 788

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Hi Leslie,
Welcome to LymeNet.
You've received good advice. I agree with what you've been told.

Websites for labs that specialize in testing for Tick-Borne Diseases (TBDs) like the Western Blot:
IGeneX in Calif www.igenex.com
Medical Diag Lab in NJ www.mdlab.com

Be aware that some deer ticks in the South carry a strain of spirochete that is not detected by Lyme tests like the Western Blot.
This "Lyme-like" illness seems to be typical of Lyme disease in every other way: symptoms, treatment, complexity of the disease, etc.

Also, it's very likely that you have one or more co-infections (Babesiosis, Ehrliciosis, Bartonella). Symptoms are about the same, but treatment is different for each.

A LLMD will know how to deal with all these issues.

Bowen Research Lab has developed a new test, not Western Blot, which is close to FDA approval.
For a tax-deductible donation of $250, they'll test for Lyme, Babesiosis, & Ehrlichiosis. To learn more about their work: www.bowen.org Click Lyme Research, then Info, FAQ, & Research Update.
Good info on all these pages.

I highly recommend you print the following:
1) "ILADS Lyme Disease Treatment Guidelines Summary" - 4 or 5 pages of facts everyone should read. www.ilads.org/guidelines_summary.htm
Note # 10 begins: There has never been a study that proves that 30 days of antibiotic treatment cures Lyme....

2) "Diag. Hints & Treatment Guidelines..."
32 pages of excellent info about Lyme & Co-Infections, written by one of the best Lyme Literate Med Drs (LLMD). www.ilads.org/burrascano_1102.htm

Midway through, find Antibiotic Choices & Treatment Categories for recommended dose of antibiotics (abx) & recommended length of treatment.

How much Amoxicillin did you take per day for 3 weeks?
How much Doxycycline a day for 3 weeks?

If you have this info, then based on Dr B's recommendations, it will give an excellent indication of whether you had adequate treatment or not. If you don't have the info, your pharmacy may be able to tell you.

Since you are still relatively early in the disease (relapse and/or new infection), then you need to be evaluated by an LLMD - ASAP.

The earlier the treatment, the better the results....but ONLY if treatment is strong enough & long enough.
If early treatment is not adequate, the opportunity will not come around again.

Go to Seeking a Dr here on LymeNet & put your location in the title. Info will be e-mailed to you.


Posts: 4638 | From South Carolina | Registered: Mar 2001  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

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Wow...

You already have the BEST help possible with the three posts already here.

I don't need to say anything..

Sooooo.. to the delight of many who think I have the rare form of run-a-muck chattering mouth no brain disease...

I won't!

Except to say WELCOME!

PS- Hope you feel better soon!


Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
bg
Junior Member
Member # 46416

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Hi Leslie,
Welcome to LymeNet also. These members are the greatest on getting prompt, accurate info out to newbies and oldies.

I think it was on TINCUP's email w/many web sites that I posted info too on page 10 of hers about IGENEX info needed to do the tests, etc.

Especially about the dr. signing, giving your DIAGNOSIS CODE no., medicare no. if applicable to you. These tests are PREPAY only unless you have them bill you for another $40 on top of the $180 you PREPAY.

go to www.igenex.com and print out their 2nd FORM REQUIRED...it gives all the specifics.

Blood test must be drawn EARLY IN WEEK so it's received within 4 days of draw. Best wishes. Betty G., Iowa


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mulelover31
LymeNet Contributor
Member # 6266

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Hi welcome !

This is the best website along with baintalk.org that there is.

We all know what feeling luppy means!!!!

Just wanted you all to know I have an appt. with Dr.C on the 13th of Oct. I am soooooooooooooooo happy and relieved to get it!
I too had trouble with the med forum and am so glad someone said to come here.

Today is a bad day but I am trying to keep going and not give in to those little critters!!!!!!!!!!!!!!!! Hugs to all!


Posts: 124 | From Mound City MO USA | Registered: Sep 2004  |  IP: Logged | Report this post to a Moderator
BryteEyez24
Member
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Hi and welcome to lymenet. You definately come to the right place! This is a wonderful place to be. You will get help with most of you problems. There are so many of us that Im sure someone has had the same symptoms. Some more than others.

I know for a fact you can definately relaps. Only because my husband has so many times I cant count.

I also live in Mass and my hubby is seeing a wonderful doctor hear in Mass. My Email addy is available so Email me if you would like the doctors name. She is so wonderful!!

Joyce


Posts: 90 | From Haverhill,MA | Registered: Nov 2003  |  IP: Logged | Report this post to a Moderator
rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001

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I'm bumping this back to the first page of General Support as it has gotten on the second page and, we, still haven't heard from llamaring.

If you see these posts to you, all you have to do to reply is to click the Post Reply button that is at the top AND bottom of this page you are now reading.

Hope everything is ok?

Rosemary


Posts: 6191 | From Arkansas | Registered: Jan 2002  |  IP: Logged | Report this post to a Moderator
llamaring
Unregistered


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Hi! Wow! Thanks so much for the info. Sorry it took so long to get back, but I was out of town then at work. I will look up a lot of those links tomorrow since I need to go to bed now, and I'll do the seek a dr. thing, too.
I never knew Lyme Disease could be so complicated!
Thanks again!
Leslie

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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707

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Hi Leslie,

Just adding another WELCOME...
And a few more New Member links for information:

My very best,
Melanie

LymeNet Links for new members: http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Dr. Joseph J. Burrascano's Guidelines: http://www.ilads.org/burrascano_1102.htm

Rose's 15 Facts for Newcomers: http://flash.lymenet.org/ubb/Forum1/HTML/011977.html

Symptom Check List: http://flash.lymenet.org/ubb/Forum1/HTML/021063.html

Abbreviations for Lyme-speak: http://flash.lymenet.org/ubb/Forum1/HTML/020494.html

Making the most of your LLMD visit: http://flash.lymenet.org/ubb/Forum1/HTML/020605.html

Camp A and Camp B: http://flash.lymenet.org/ubb/Forum1/HTML/021395.html

Something to share with friends and family members: http://flash.lymenet.org/ubb/Forum3/HTML/008886.html

------------------
C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]


Posts: 7052 | From Colorado | Registered: Mar 2003  |  IP: Logged | Report this post to a Moderator
treepatrol
Honored Contributor (10K+ posts)
Member # 4117

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WELCOME To LYMENET

Here's more goodys! A typical response to newcomers.

Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.

Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.

How to Search Courtesy of Danq
LymeNet Links for New Members
Newbie's Lingo

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

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

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

Labs
MDL
Igenex Labs

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
- Not present
+ Low
++ Medium
+++ High
+/- Equivocal = indeterminate (there, but not as intense as Low)

Drug Interactions and Other Drug Info
Drug Digest
American Medical Women's Association Tiscali Reference Encyclopedia
Herxing
What Is a Herxheimer Reaction?
What Is Herxing?
The Herxheimer Reaction

Check Diet Link Atkins Diet
Sexually Transmitted ???
Transmitted Through Sex?
Sex Question-Serious-Adult Content
Video On Demand: Blood Supply May Be Source Of Lyme Disease Infections
Good Site Canadian Lyme Disease Association
FDA on Lyme Testing
Legal Help

GreatSite
MedicalDictionary

USA Support

SupportGroups Canada

SupportGroups Australia


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

Marnies......... Ten Points Regarding Mg and Lyme Disease

Canlyme MAG


Help with Meds


Vitamins you should Know

Tests Synonyms Guide

Lab Tests Looky


How to apply Permethrin


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

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