posted
I am going to try to keep my history brief, I know that regulars have heard it all before.
One of my biggest issues is that nearly 4 months into this I still can not get a diagnosis,
I am meeting skepticism here in Ga. I did live in conn. during the early years this disease was discovered so I am knowledgeable about it somewhat, and probably more frightened than most here.
Around the first week in March I became very fatigued. I was concerned that I may have blood suger issues, at 47 I am about the right age.
I visited my GP, test were run and nothing was found.
About a week or so later what had been a small red place under my arm continued to enlarge to about the size of a quarter, the center turned flesh colored and spread out.
I went to the internet already having a clue and upset, the only place I found a duplicate was under the CDC website and it was a Lymes rash.
I returned to the GP that was quite skeptical and begged her to go on the internet, she agreed to treat me with doxycyclene claiming the entire time that she did not beleive that it is Lymes, because they don't have Lymes in GA.
The Lyme titer was negative.
I improved somewhat after a 2 week course than went down very hard a week later, The symptoms were typical the worse being foot pain, tremors vision problems, and fatigue.
I returned to the Keiser group to another Dr. that informed me a negative titer meant I could not have it and ran some more labs, and sent me home empty handed.
Of course I worsened over the next week to the point I could not get out of the bed.
The set of test showed a slightly elevated WBC the next doctor claiming it could not be lymes put me on a broad spectrum antibiotic avalox, some of the nerve and joint pain was relieved by this.
The brain fog and vertigo continued to worsen to the point that as of the past week I have the sensation of being drunk, very drunk.
The avalox sent me to the emergency room with symptoms of hysteria from an overload to my nervous system that made jump out of my skin if touched, or from light and sounds.
I have had questions about my emotional statis from day one, the assumption that I am middle aged and depressed seeking some attention, I find this humiliating.
I was treated like a junky at the ER until the drug test came back normal, I also met skepticism about the lymes there.
My first question, They sent off a western blot test 3 weeks ago, does it normally take that long for it to come back? it still is not in?
Does anyone know of a Dr. in the Atlanta are that believes in the existence of this disease and would diagnose me?
I started treating myself with the salt and vit.C this morning, has anyone seen any improvement with this treatment.
At this point I am truly concerned that I may die of this, or worse end up vegetable.
Thanks to anyone that can help with these questions. Laurie
A brain tumor was rulled out on this vivsit
Posts: 36 | From Dallas GA | Registered: Jun 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi Laurie and welcome!
You are not crazy.
99% of Dr's no nothing about lyme, leaving many people undiagnosed.
A bullseye rash is indicative of lyme even without testing.
An ELISA test is worthless.
Even a western blot from labs other than Igenex is likley to be negative.
The important part of a western blot is the individual band results. Other labs don't even test for all bands.
They exclude some lyme speicifc bands from their western blots which is incomplete and inacurrate.
There is no lyme test that is 100% accurate.
Lyme is a clinical diagnosis...means that it is based on history and symptoms. It can be supported by labs, but doesn't have to be.
Please create a new post on this board asking for LLMD's in Atlanta Georgia area.
You need a LLMD who follows the ILADS guidelines.
Lyme does exist in GA.
Your symptoms sound like lyme. It is possible that you could have common coinfections also.
Also go to the "Medical Questions" board and post questions. Alot of intelligent people will help you.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
I am sitting here crying reading post by others that are suffering and afraid like I am how could such a devastating disease such as this be ignored, and we be allowed to suffer like this.
Billions are given each year for cancer, I can't comprehend that I might be dying because Dr.'s don't want to believe in an illness.
Posts: 36 | From Dallas GA | Registered: Jun 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I know Laurie, we have all felt that way.
It helps to get involved in lyme activism.
There is an activism board here too.
We are slowly making progress and having our voices heard.
Learn everything you can about lyme and coinfections from the real lyme experts...ILADS trained LLMD's.
Then you will be able to start educating family and friends.
Read the newbie info links at the top of the Medical Questions board.
Keep coming back to the different boards for support.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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bettyg
Unregistered
posted
lppt,
i sent you PM W/GEORGIA LLMD info on your llmd request for one.
you can get involved in trying to change things for lyme disease, please go to ACTIVISM board; use ARROW at bottom right to find it.
look for HR 1179, it's our lyme disease bill in congress. look for the names of folks SUPPORTING IT AS "CO-SPONSORS". are ALL your state's house reps names on their from georgia?
if not, CALL THEM; that info is shown also ... if not there in another post ok.
OR EMAIL THEM; again, there is info there w/form letter and you just modify it for your state ok!
poster, i'm going to send your link here to moderator loub, and ask that he MOVE it to MEDICAL where it belongs since you need medical advise ok!
he'll send you a note too saying WHEN he moved it so you can find it again.
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Dear llpt,
Most of us experienced the frustration and fear you are now dealing with and for that I am so sorry.
You are not alone, unfortunately. I think you need to be seen by an LLMD and your Kaiser insurance will almost assuredly not cover your visit nor your testing.
Your symptoms and the rash are indcative of Lyme and you need to be in capable medical hands.
May I suggest going to "Seeking a Doctor" and asking for a referral? In the meantime, reading all you can about Lyme and its co-infections will be time well spent.
Best of luck to you.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
Sent you a Private Message.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Avalox is in the same drug family as Cipro and Levaquin. They do not treat Lyme, but do treat bartonella. Because of your reaction to Avalox, I would highly suspect bart .... plus foot pain is usually bart.
I think the closest LLMD to you is in SC.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
How effective is Doxycyclene?
Posts: 36 | From Dallas GA | Registered: Jun 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
If given in adequate doses, doxy can be very effective.
It does take long term combination therapy though. A single drug won't be enough.
If you are taking doxy, beware of the severe sunburn that can happen very quickly while taking it.
Take every precaution to protect yourself from the sun. A doxy sunburn is like no other.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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