posted
i was just curious....my tick bite was almost 3 years ago. The tick was attatched to my head for at least 24 hours.
I went through alot of symptoms within the first year, thinking I had lupus.
I am just curious.....does lyme ever go away without treatment? And....if it is proven to be lyme, since it has been a while since my bite, would I be considered to have stage 3, or chronic lyme? Even if the symptoms have gotten better?
The symptoms are not gone, maybe I'm just learning to live with them, I don't know. The pain in my joints is not nearly as severe, but the brain fog is driving me crazy.
My arthritis in my left knee is bad too, I can hear my knee crumble when I climb the steps from my laundry room. Also, within the past 6 months I have had horrible left sided hip pain, which I have not had checked out.
I do not see my rheumatologist anymore, because the bill just got to be outrageous. I still have my MD, and he just ordered a lyme titer test yesterday.
Wow, there are alot of questions. I've found good information on this site, but none that seems to fit my case to a T.
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
kristy always get copies of your results. Many are
told neg when in fact they had borrelia specific bands that should not be ignored. A titer test can
be useless if the lyme is well hidden. I would seek a LLMD to help you as most patients have more than
just Lyme. Stages are applied to symptoms depending on severity. Not necessarily how long
you have been sick. The learning to live with it is so common in Lymies. Brain Fog should not be
dismissed. Glad you are doing some researching that may help you.
-------------------- 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
thank you pinelady! could you let me know of a doctor that is in the ky area?
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Kristy,
For those replying, it may help if they could read the additional details you posted at a thread yesterday, describing how you had TWO bulls-eye rashes after the tick bite - and other symptoms and history-- you received no treatment for lyme but did receive treatment for lupus with IV steroids.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In addition to some of the links posted at your previous thread, this may be of interest. This is what you want to avoid from happening (and why it's so important to be assessed by a LLMD):
posted
thank you keebler, i am not very good with message boards, just haven't used them much. that is alot of information to take in....
I will do my best to try to read it without interruptions....Lord be with me.
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Kristy, lyme does not go away unless it is treated.
If you got bitten by a tick and you got a bulls eye rash, there is no doubt that you have lyme disease. Period.
For the first 5 years I had it, I had it episodically. I would be sick for a period of time, then wake up one day and be normal. But, eventually, I was sick all the time. And, eventually, it will affect your brain, and you will have more and more symptoms and they will get worse and worse. So, you really can't ignore it. The sooner you get it treated, the better.
And, do NOT take any more steroids as they make the lyme disease much worse. This is not my opinion. It is the statement of the lyme disease guru of the U.S. and the world--Dr. Joseph Burrascano. Here is a quote from page 12 of his Guidelines:
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants."
posted
Last night I came across an article written by Leslie Buterin, The Lyme Lady.....
and I was in tears because my brain feels the exact same way she wrote about.
I have been trying to process all of this for the past few days, and I'm pretty dang sure I have been dealing with lyme instead of lupus.
I appreciate your help with giving me the information....I don't have the strength to go out and find it on my own right now...
I have 5 kids, ages 5-13...and I hate what this has done to the way I relate to them. I absolutely cannot
tolerate much noise at all....it really makes my head hurt, especially if I am trying my best to concentrate...it's not possible to do it if there is noise in the room.
I also have a horrible problem when I am in a conversation with someone. I might have something totally off subject that I want to ask/talk about and if I wait just a few seconds too long
as I'm politely waiting for someone else to finish, my thought is completely gone....I get so extremely mad...and then a few minutes later with alot of hard thinking it finally comes back.
It's so frustrating. I'm going to be getting an MRI done asap, and I don't care what I have to do to get it done.
I guess you could say I'm mad and scared crapless......kinda the same feelings I had when they told me I had lupus.....except with the lupus.....I wasn't convinced, EVER.
But with the thought of lyme, I'm completely convinced because of my own investigation.....
Again, thanks so much.....God Bless You.... the hubby says I need to stay off here until I get test results back.....don't think I will though
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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posted
hey just wanted to let you know....my memory is exactly the same I'll think of something..then its gone...i call it the black hole.....its very frustrating........also the noise issue....I have had periods when noise is unbearable....even someone putting a key in the front door lock......if my husband has his music on and the kids TV......it feels like its really irritating my brain.......how long do you think for your results.......
-------------------- 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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posted
hey you dont need a referral for a lyme doctor, unfortunetley you have to figure who that is yourself, with help from here......i was diagnosed via western blot in oct...but i may have had it anywhere from 1-4 years.....i was on oral doxy, iv rocephin then back to oral doxy the i went to see an LLMD 2 weeks ago and she put me on zithromax, mepron, artemisinin, and omnicef if needed, thats on hold will be reviewed in 2 weeks....good luck but push for further testing or see someone who knows.....you can PM me if I can help you with anything.....
-------------------- 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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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- No, please do not ask your doctor to refer you. Your doctor blew it. (new readers, see past thread, link above). Your doctor also would likely send you to an ID doctor (again, refer back to your original thread for why that will likely spell disaster).
You may have hyperacusis as a result of lyme. Hyperacusis is decreased tolerance to even normal sounds - at regular volume.
The inability to track more than one thing can be ear related but also brain related - and it is VERY common, in fact a HALLMARK of neurolyme to be easily overstimulated. This is mostly due to the toxins from lyme and the hit to the liver and kidneys so that your body and brain/nerve cells are literally irritated by the toxins.
Magnesium and Fish Oil will help. Please go back to your original thread and get the Singleton book linked there. Also be sure to see the supplement and self-care pages for Burrascano.
There are some things you can do while you find your LLMD but, please, do make some calls on Monday. The waiting lists are often quite some time out.
When you feel pushed to the limit, take a time out. Turning off the TV may be excellent for everyone. It is very irritating to everyone's brain cells, even more so for lyme patients.
I've gone a year or two, several times, without a TV and did my best during those times.
--------
Here's your original thread with the links to which I refer:
posted
yep..at my worst....I couldnt stand the TV..to watch or listen.......good luck
-------------------- 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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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I agree, don't ask your doctor to refer you. Get the book Cure Unknown so you understand what you are dealing with, not just the disease but the politics of lyme.
I have the same cognition problems. I was walking to the water hydrant telling myself out loud, "turn off the water, turn off the water, turn off the water. . . . . . "
Ten hours later I heard the pump running and realized I walked right on by, forgot in a split second what I was reminding myself over and over to do. The horse's water tank had been overflowing and there was a lake in their paddock. Thank goodness it was summer! I really worry that I will do this in the winter.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Just got home from work, boy I'm wiped out!...
I was thinking to myself also that my Dr would probably not think to refer me if this lyme titer test comes back neg...
he would probably think I was trying push something that in his eyes shouldn't be pushed.
He's not the one suffering in all sorts of ways from a disease though.
I have decided I will start making phone calls and I won't wait to see what the results of the titer test are since I hear they are useless anyway.
Thanks for filling me in, I feel so stupid regarding lyme....just like a baby learning i guess.
I will get the reading materials....I have a book here that I am supposed to be reading for my son regarding ADD,
and I can't make it more than 10 pages without being interrupted or find i've read a page or two and my mind didn't catch one thing....so frustrating!
Goodnight everyone....It's been my pleasure getting acquainted with you all! God Bless!
kristy
-------------------- ~~~~\0/~~~~SwimMom~~~ Posts: 50 | From ohio | Registered: Feb 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The lyme titer tests do not matter. You had bite, 2 bulls-eye rashes, no lyme treatment but rather IV steroid tx which lead to serious long-term symptoms. Consulting an ILADS-educated LLMD is absolutely warranted.
Since you are several time zones later (or really earlier) than I am, I assume you won't be reading this until Monday and that you are already asleep.
How old is your son? Has he been assessed for lyme? ADD can be one set of symptoms from lyme. Perhaps the LLMD can also help your son - be sure to mention it - maybe even see if a piggy-back appointment could be arranged.
First thing is to get a LLMD and let him or her guide you.
While it's good to read, this is rather like a graduate level immersion course and can be overwhelming. Don't let it consume you as it can take years to get up to speed on your own. First: get a good doctor. The just do the best you can taking good care of yourself regarding nutrition, etc.
The very best of luck to you. There is light at the end of the tunnel. Really. You just need an excellent engineer. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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