tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
My blood has been drawn for lyme and co-infections and sent to Igenex. Just recently was able to accumulate all the medical records and they too have gone to my LLMD.
At this point, I know the results are in, my appointment is Monday and my anxiety is through the roof.
I obviously don't want lyme after all I've read here, at the same time, I've gone five years with being sent to specialist after specialist, all saying I have blah blah blah,"but something else is going on."
My most recent records were saying fibromaylgia with neurological symptoms with "migraine disease" etc, etc, etc. but that my symptoms aren't consistant with any known illness.
They recently gave me an MRI for possible stroke but since my MRI of my head is clean, I'm told there is no reason I should be having these problems walking, trembles, numbness...and the list goes on over the last five years.
Luckily my N.D. since my fibro diagnosis said I should see a LLMD and here I sit. When I saw the list of symptoms and EVERY blasted one of mine fit in this mold, it made me wonder why my M.D. or even neurologists had no clue.
So why am I writing? I'm scared. Deep down I know everything fits and I'm mad at myself for believing Elisa tests so never even looking past them. I had NO CLUE.
Now I read post after post that could have been written by me. I don't know how to distract myself and stop thinking about Monday since the pain is messing with my mind.
I started out reading everything I could once the Igenex blood was drawn. My daughter in college has a roommate with lyme that sent me here. I've been posting since the blood being taken to learn and pass time?????????
I have a hard time understanding how in our powerful country, something this big could go unnoticed by M.D.'s across the entire country.
So here I sit, scared to death, knowing friends and family have to be thinking I'm crazy by now with all these doctors and now I will travel out of state to see an LLMD.
I'm trying so hard to stay strong, learn all I can....but the little child in me just wants to cry out to the world.
I see Monday as bad either way. Either I have it and my search comes to an end but then the controversial abx are next. The other side may be even worse in that the serach has to continue.
I think I'm writing because the reality has actually sunk in. Yes, I know I've been very sick, but "denial" is quite a mind tool.
One day I think I can handle this and then days like today are so rough. So I guess my question is, does some of this heart palpitations and massive sweats settle down once you get over this hump?
I can't even tell if this is more of the "symptoms" I've suffered or if I'm just plain scared. I'm hoping SOMEONE here can sort of relate to what I'm feeling and if so, some guidance on how to cope with pain without drugs and being tough through this search.
I worry about the financial burden this could cause my family, the helplessness I feel of not being the person I once was...I just want to wake up and find out this is all a big nightmare.
I guess this is pity pot hour and I don't like the person I am right now. I feel too weak to fight but know I can't give up. It's been a LONG five years. I've given birth to four children so I DO know pain.
But pain that lasts for days, weeks, months... I don't know what people do. It looks like I have the whole pharmacy prescribed but side effects have had me in the ER that I now fear any new drug.
Basically I'm a mess and needed a place to vent. I know none of you have an answer for me and that will come on Monday. But until then, how do you stay focused on something other than not feeling well?
I know I just have to suck it up and I'm surely not the only one in life that has dealt and gone through this which is why I come here for guidance. Anyone out there that sort of understands my insanity right now?
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Hi! I am sorry that you are so worried.
I was glad when I was dx. as I knew I had something really wrong with me, but all the MD's kept wanting to send me home on anti-anxiety meds.
I am still awaiting my appt. with LLMD which is later this month.
I get scared too looking at all of the things this disease can do to you. I have two very young children.
I guess I'd rather know than not...and try to be as aggressive about treatment as I can be.
Right now I am seeing a cardiologist and am scheduled for a nuclear stress test in 2 weeks.
I decided that if this is going to be my life, then I'm going to make the best of it.
I have to...for my children and for myself.
Hang in there. I hope it helps to know that there are others just as frightened as you.
Will pray for you.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
LLMDs tend to be very kind.
Posts: 57 | From the middle of a pandemic | Registered: Sep 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hang in there! Because if a LLMD diagnoses you with lyme, then you can and will get better with appropriate treatment.
Your symptoms sure sounds alot like lyme to me -- I have had those symptoms too -- and I am feeling much better after four months of treatment.
It seems especially important to think positively when one has this diagnosis, because it is a long-term commitment to wellness in order to recover. ABX, rest, good food, healthy habits are all part of that commitment (well for me at least).
Just remember to bring your full list of symptoms to the appt., and good luck! Let us know what happens.
Posts: 2557 | From home | Registered: Aug 2006
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posted
i'd suggest signing out your actual medical images themselves, and getting a second interpretation of mri,etc. by a llmd interpretor. you can do this yourself.
Posts: 2708 | Registered: Feb 2005
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quote:Originally posted by Vermont_Lymie: Hang in there! Because if a LLMD diagnoses you with lyme, then you can and will get better with appropriate treatment.
Amen to that! We've all been where you are, and I'm telling you that life is good on the "other side!"
It may take alot longer than you want it to, but with the right attitude, healthy living and a good dr, you will get your life back!!
Goodness, your letter could have been written by me 1 1/2yrs ago, I know exactly how you feel.
Why in the hell aren't more doctors educated in this awful disease? Better yet why are the majority of their minds so closed to learning more about it? Then when we do find a doc to treat they are massacred in the press and by the medical boards?
Yes, the sweats and heart racing are TBI symptoms. I too believed the ducks and all their quack crap and mad at myself for not trusting my own instincts.
Good luck w/ appt. and keep coming back here to educate yourself and most of all for support. You are never alone as long as this board is here!
Stella Marie
-------------------- Stella Marie Posts: 694 | From US | Registered: Apr 2005
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bettyg
Unregistered
posted
Cathy, it's the waiting that is the pits!
Have you got any BELLY-LAUGHING VIDEOS to play to get out those endorphines in you? Spend quality time with kids. Pryaing for you Cathy/girls! Bettyg
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quote:Originally posted by stella marie: Yes, the sweats and heart racing are TBI symptoms.
Babesia in particular.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Thank you all for responding. It's not that I'm afraid of a diagnosis. It's more I'm afraid I won't have one and I don't know how much longer I can live in this pain and be told they have no clue.
My family feels for the first time in five years, I'm on the right track, but sadly, they have said that with other path's I've been down.
I WANT to know what is wrong so I can atleast start some kind of treatment program. The odd part is that I've waited five years and yet as the pain gets worse, three lousy weeks has felt like forever.
I think I'm just overwhelmed, have trouble concentrating on what I need to be doing and although I have a walker to get me from the bathroom and back, just doing that leaves fatigue I don't know how to keep going with.
I guess I just don't want another doctor that says they can tell I'm in pain and I have all these little things wrong, but they have no clue what it is. I'm running out of places to turn.
Basically I think I just need to KNOW what I'm fighting because it feels like I do more waiting to get in to all the specialists and then to get no answers.
I know I'll be alright....I think I just needed to feel that I wasn't totally losing my mind and that SOMEONE out there understood.
It's so hard when your life use to be so active and now that activities continue but you can hardly move. Thank you all for being so kind. I don't know what snapped in me.
When I first started this route, I was reading everything and feeling so confident I was FINALLY going to have a chance to get up and moving without horrid pain.
I was taking notes to know intelligent questions for my llmd, but yesterday, it felt like the walls were closing in on me. I don't even understand it myself, so doubt anyone else can understand.
But thank you. Just knowing that there are others out there that have been here and feel treatment has helped them feel better, atleast gives hope.
And yes, I really need "hope" right now. Thank you all!
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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