posted
i guess i will just trust the lupus diagnosis and let this be another much needed lesson to take better care of myself....the more i learned about lyme, the scarier it became to me, especially the part about trying to find treatment and also trying to afford treatment with 32K a year and 5 kids.....i am definately counting my blessings!
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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posted
I am sorry to be the bearer of bad news, but a negative test cannot rule out Lyme.
There is a long list of reasons why many of us test negative. Some people have negative tests at first, and later have positive ones.
The only way Lyme can be diagnosed is by clinical diagnosis, where a doctor experienced in treating Lyme patients (until they get better) evaluates all your symptoms and history.
A positive blood test is evidence that you have been exposed to Lyme at some point in your life, and can be used in support of a clinical diagnosis.
My first Western Blot test had only one positive band, and my local doctor told me it was negative, so there was no need to worry--I could not possibly have Lyme.
She was wrong, and I do.
If I had accepted her conclusion, I would be getting steadily worse now instead of starting to improve with proper treatment from an LLMD.
Meanwhile I would still be spending horrendous amounts of time, money, and emotional energy visiting one specialist after another who told me there was nothing wrong, or it was in my head, or there was no treatment for it so I would just have to live with it.
At least the money I have to spend now is for something that is actually going to help me.
Please read some more about Lyme before concluding for sure that you don't have it.
Also be aware that if you do have Lyme, any use of steroids can make it much worse than it already is.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
You need to request western blot,,,I thinK i told you my "lyme titer" was negative but my subsequent western blot was positive......I would not trust that this is not Lme until spoken with a LLMD that will treat you correctly.......
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
my lyme titer was negative......but my western blot was positive.
Posts: 3905 | From USA | Registered: May 2007
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Your health depends upon finding an LLMD and being evaluated. To do less than that would be foolish.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Kristy,
Please read back over some of the replies from the past week. I certainly understand how frightening and overwhelming this can be. But, please, for the sake of your life - you had TWO BULLS EYE RASHES after a tick bite - that is LYME, not lupus.
I also understand the enormous weight regarding finances. And while it would be best to see a LLMD, if you simply cannot, you must be proactive and learn how to best take care of yourself around this. Accepting the lupus diagnosis and just eating better is not going to cut it.
Is there anyone in your life who may be able to help you locate, get to and manage the financial part of this?
If not, you are still not off the hook. There are still some things you can do other than just lying down, waiting for it to get worse.
I don't mean to sound harsh here but your life is on the line. It sounds as if you did not even read some of the links detailing lyme disease. It is nothing to ignore. And you also don't have to be scared of it - unless you ignore it.
I know you posted for a LLMD and insurance and money is a concern but keep looking. Contact EVERY support group around you and where friends and family live.
Also be sure to get at least Singleton's book, "The Lyme Disease Solution" as that can be a basic guide at the beginning.
Here are the links to your recent threads so that you can read back over information. There really may be a way for you to get to feeling better again. No one should have to deal with all the symptoms you described in your first post. Really, this can get better and if one path does not work out there are many avenues - may ways to get better if faced head on.
Good luck.
==============
At this thread, where you first describe many serious symptoms and rashes after having had a tick attachment of some time - there many reference links to guide you:
posted
"But, please, for the sake of your life - you had TWO BULLS EYE RASHES after a tick bite - that is LYME, not lupus."
++++++++++++++++++++++++++++++++
OMG!
Treat yourself if you have to!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Please note that on page 7 of the following paper Dr B talks about "Diagnosing Later Disease"...please read that section. He specifically says that the "ELISA is not sensitive enough to serve as an adequate screen..."
Dr's depending on the Lyme ELISA to diagnose Lyme is one reason that many people here were not diagnosed many years ago and have suffered needlessly for years!!!
It is worthless!!!!!!!
Get a western blot from Igenex and see a LLMD for sure!!
From what Lymetoo said above, I am assuming that in a previous post you said you had a tick bite and 2 bullseye rashes...is that correct????...if so, Lymetoo is correct....that is LYME!
Read this link , pages 51-52, to see how Lyme and Lupus can look alike....
-------------------- 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
A bulls-eye rash is always lyme. . and it doesn't go away. My Elisa was negative. My western blot was negative. My kids, who got Lyme through me, were both positive on their western blots with identical bands.
Don't trust the testing. Lyme and Lupus can look so much alike. . and as awful as Lyme is. . not treating lyme and watching your life slip away is much worse.
I have a family of 4 and we figure out treatment. . even on less income than you have. You will figure it out. Consider finding a lyme literate Naturopath or homeopath that will be more affordable .
Posts: 564 | From Tick Hell | Registered: Oct 2008
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Now, there are some lucky ones who get the bulls eye rash and maybe don't even get sick. Others may get sick but, somehow, they get better all without knowing what really hit them and, somehow, they bounced back (or at least temporarily). There is still a lot we have yet to learn about different species of borrelia, etc.
But, when someone has the on-going symptoms such as you describe, this is a very serious situation that requires action. We'd all love to say, oh, this will get better on it's own but that is highly unlikely.
It is likely to get worse left alone. However, with action, this can get better. Don't be afraid - well, okay - that's understandable. But, even if afraid, please proceed with action.
Some of us are so emphatic here because we are trying to undo all the wrong stuff that was done to us that ruined years of our lives in so many ways we would have previously thought unimaginable. We don't want that to happen again to anyone else.
Your life is valuable but you will have to fight for it. We're here to help with links to materials that we could only dream of having found years ago. But you have to take this information, get expert care (or read and comprise the best plan you can) and act in your own behalf.
The current level of medical treatment is failing you. Only you can stand up for what you deserve in light of the facts. -
[ 02-12-2010, 10:46 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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julielynne4
Unregistered
posted
Wow, how sad that Kristy is so misinformed by her doctors. And yet, how awesome that you all here have explained to her the truth about lyme and testing.
Obviously, Kristy you have lyme. Please do not accept a diagnosis of lupus!
posted
Thank you all for your help and support, I am going to be processing it all but at a slower pace. It's insane to me that our world is the way it is. People can go through life in so much pain and misery and our doctors and insurance companies are so selfish that they don't even care. I am planning to go to my family doctor with all of the information I found on this site and see what he has to say about it all. He has been my doctor for 20 years and he has saved my daughters life....I know he does what he does because he cares about his patients. I can't imagine why he would dismiss the information on this site....or maybe he can help to better educate me as to what is happening here and why. I do need to clarify that I did have 2 rashes.....I can't say for sure that they were bullseye rashes....the one under my arm was circular..the one behind my leg was oval and all the way across the crease of my leg. I don't remember for sure if either of them had rings around them. So this is why i am fuzzy on it all. Maybe I said they were bullseye rashes, without knowing for sure. I got to the point where I realized that if it is Lyme, I might as well roll over and die, because I can't afford to not feed my kids so I can be seen by a LLMD or afford the long term treatments that my insurance most likey will not cover.....and I'm finding that the more I read here I'm seeing that not many LLMD's would even treat lyme the same as the other....so how do you know if you're even getting the proper treatment? I have nothing to sell, no house to let them foreclose on, I own one vehicle that is worth about 2,000 dollars....so how do i go about doing the trial and error treatments? I'm so at a loss. I can't get those pages to open but I am working on finding the right program that my ancient computer will download to open them. God Bless You all and I'm truly glad that you all have found a diagnosis and treatment that will make your quality of life better. For now, for me the only option I have is to take better care of myself.
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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To be clear, lyme can exist without a rash. However when a rash does appear, it can take many forms, usually circular or oval. There are other links with photos beyond these at the LDA but these are just a few basics photos:
[ 02-13-2010, 02:48 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Some treatments are not expensive. Doxycycline is only about $25/month. Usually LLMD's want you to use more than one antibiotic if you've had it for a while, but they're not insanely unaffordable.
Dont get hung up on the shape of the rash- or whether it's a bulls-eye. Most people don't get a 'typical' rash, if one at all, and unfortunately not all doctors know that.
-------------------- Symptom Free!!! Thank you all!!!!
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Everyone in my family had a neg. Lyme titer. That is why they are worthless. We are 3 of us CDC positive through IgeneX testing, and the other 2 positive bands as well.
If we had gone on the Lyme titer alone, we would still be wondering what was wrong with us.
I hope you will take everyone's responses to heart. Hang in there
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
I hope I never sounded ungreatful for all of your responses and help.
I'm sure most of you probably went through phases with all of this, fear, denial, fear....
and it's so hard to understand all the politics of it all...
I just wanted to come in tonight and once again thank all of you!
I have to put my trust in God right now to lead me to the answers...
God bless you all!
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I had a neg. titer and a neg WB and guess what-2
1/2 years later I found my enemy. I took a
antibiotic for 3 months and tested with Igenex
after being off 11 days. And my MD still said I was
neg. Find a great LLMD to get
you well.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
pinelady, how did your LLMD treat you? how long? are you still being treated? thanks.
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
He is treating me appropriately. As I have found
since starting trtmt. I also have 4 coinfections
that I did not know I had till I broke out in
rashes, etc. Got pics took to LLMD who knows how to
treat. I am better, but still feel a long way to
being great. Which is a lot better than where I
was headed without any treatment. The tests are
lousy by most labs but your symptoms are not.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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took a load off my mind.
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