Aa
my test results - help!
any advice on where i should go from here would be great... i'm so discouraged :(
That sounds like good news -- hope you are feeling better soon from the Herx. Keep going!
i talked to a nurse today, and she said it is a herx too. i am so so soooo happy to hear that!
yeah, i am going to save the pictures to show to the doctor for sure! the rash is almost gone today, but i am having other weird problems. kinda makes me hopeful that my body is just reacting to the anti-biotics and they are eventually going to get me better :)
keep the photos to show your dr. somehow photos get their attention like nothing else does.
I think there's a way to post photos through your profile here, but I don't know how to do it. somebody else can say.
But ... 'scratches' sound like a description of bartonella symptoms ...
I think there's a way to post photos through your profile here, but I don't know how to do it. somebody else can say.
But ... 'scratches' sound like a description of bartonella symptoms ...
how do i post pictures? i have a REALLY WEIRD rash on both my arms since starting doxycycline on tuesday night... it looks like i've been scratched up... i've never had anything like it...
[IMG]http://i44.tinypic.com/1555p54.jpg[/IMG]
[img]http://i39.tinypic.com/1z3ncyd.jpg[/img]
[url]http://i44.tinypic.com/1555p54.jpg[/url]
[url]http://i39.tinypic.com/1z3ncyd.jpg[/url]
[IMG]http://i44.tinypic.com/1555p54.jpg[/IMG]
[img]http://i39.tinypic.com/1z3ncyd.jpg[/img]
[url]http://i44.tinypic.com/1555p54.jpg[/url]
[url]http://i39.tinypic.com/1z3ncyd.jpg[/url]
p.s. i just looked at your profile:
"its turned my young, free, funloving 22 year old life into an old, weak, tired, painful, sick 88 year old life."
i cannot tell you how many times i have said the EXACT same thing!!!! ... i mean exact, i'm 22 as well and i constantly compare myself to an 88 year old! i know how hard it can be to feel like this during what should be some of the best years of your life... it's so hard watching young people our age having so much fun and not being able to do the same :( but you are not alone, hang in there!
"its turned my young, free, funloving 22 year old life into an old, weak, tired, painful, sick 88 year old life."
i cannot tell you how many times i have said the EXACT same thing!!!! ... i mean exact, i'm 22 as well and i constantly compare myself to an 88 year old! i know how hard it can be to feel like this during what should be some of the best years of your life... it's so hard watching young people our age having so much fun and not being able to do the same :( but you are not alone, hang in there!
thanks so much for the support and encouragement chelsea! i can definitely relate... i have been told the exact same things you were told... i was even given a list of suicidal hotlines to call when i came into the ER honestly so sick that i truly believed i was dying!i feel like i've explored every disease and i STILL don't have a diagnosis. i am so sorry you had to suffer for so long until you got yours :( i wish my LLMD would have took one look at my test results and been certain that is was lyme. based on his remarks on the test results i got in the mail he doesn't seem sure. i am still trying to get ahold of him so i can figure out what i am supposed to do now and talk to him about my results, but his office is closed until monday. more waiting... but hey, i have been waiting for years... so what is another 4 days :p
heyy. my names chelsea and i can totally relate to what you are going thru right now. for so many years i had been progressively getting more and more sick until about 9 months ago i became so sick i could barely even get out of bed . i went to my general physician, she sent me to a gastroenterologist to adress my severe abdominal pain . i got an endoscopy and a colonoscopy and they told me i was a healthy person. knowing i wasnt i went back to my physician and she sent me to a neurologist for my cognition dysfunction and had multiple mri's when he told me i was fine. it wasnt until he ran a huge blood panel that he found an abnormality. he tested me again, the abnormality was there again so he sent me to an infectious disease doctor. i was so apparently sick but he told me, "it was definitely not lyme. i was just a young girl looking for attention and i needed to get off the pain meds and on to the antidepressants and see a psychiatrist" i immediately found a second opinion from a LLMD who said without a doubt in her mind i had lyme disease looking AT THE SAME EXACT TEST that the infectious disease doc had. she now needed to confirm what other coinfections i had along with it.
you cant give up. if you in your heart of hearts knows your sick.. you cant deny that. i knew myself really well so i knew there was more to it than just being an "attention seeking depressed young woman" for 8 years multiple docs told me i don have lyme. i was too sure the war i was feeling inside my body was not jus in my head. don't let the docs rob you of your sanity because once you do find a diagnosis.. lymes or not.. your gonna need the strength to fight for your body back girl.
okay, let me see if i am understanding this [i get confused really easily] babesia, bartonella, and ehrilichiosis are all associated SPECIFICALLY with the 41 dKa band... not just bands in general? just want to make sure i'm understanding that correctly.. i am having such a hard time grasping what i am reading on these websites... what a complicated illness! not good for a confused person like me, haha. i'm trying my best to understand though... i've been spending hours reading up on it for months, but i'm still pretty lost!
most Lyme websites list them ... bartonella, ehrlichiosis, babesia, and a few others. if you google 'lyme coinfections', you will find a bunch of websites with the information. they need tests other than the basic Lyme test, and some of them aren't treated by what treats Lyme.
does anyone know of a website that lists ALL the diseases that are associated with the 41 dKa band? so far i've come across syphillis, HIV, and peridontal disease and i KNOW i don't have any of those and i NEVER have... but are there any others?
and i meant that it is looking like the LLMD doesn't think i have lyme afterall, because there was a section on the papers he sent for him to circle it if he thought i had lyme despite having a negative test... and he didn't circle it, which is why i was assuming that...
the LLMD is the one who took a test. i AM going to ask him. i just can't get ahold of anyone in the office right now. i already tried to talk to them today. sorry for being so negative, i'm just really discouraged and down right now even though i don't want to be.
The problem with the Igenex test results is that an LLMD may well interpret them differently than a nonLLMD would.
You won't know if the office will move your appointment if you don't ask, and you don't know what they can do for you since it 'looks like' you don't have Lyme after all...but you don't want to spend another summer in bed feeling awful. You're assuming things that may not be true.
I hope you feel better soon.
Good luck!
You won't know if the office will move your appointment if you don't ask, and you don't know what they can do for you since it 'looks like' you don't have Lyme after all...but you don't want to spend another summer in bed feeling awful. You're assuming things that may not be true.
I hope you feel better soon.
Good luck!
see, i'm not sure if i even need to be seeing a LLMD based on my test results... so i don't think the office would be willing to move my appointment up or give me a cancellation. i imagine the patients with definite lyme are a higher priority to them. to be honest i don't even know what they can do for me since it's looking like i don't have lyme afterall. i don't have any tests coming up, they just said "come back on august 10th" ... i do not want to spend another summer in bed feeling like i'm dying. and i'm worried that if i do go back in 4 months and re-take the test it might still be negative, and then i've wasted all that time waiting for nothing! i am thinking about asking the nurse if the doctor can mail me a lab slip to have some different things tested here in the meantime... like my horomones, since my regular doctor won't test me. i just wish now that ALL of the bands came back negative so i could know FOR SURE that it isn't lyme and cross it off my list and move on toward the proper diagnosis.
i think i will keep a spiral notebook by my bed... i like making lists anyway :) i just started vitamin b-12 shots and i think keeping track of how i'm feeling will help me figure out how often i should do them.
thank you for the website, i will check it out right now!
i think i will keep a spiral notebook by my bed... i like making lists anyway :) i just started vitamin b-12 shots and i think keeping track of how i'm feeling will help me figure out how often i should do them.
thank you for the website, i will check it out right now!
I'm with you about not being okay to go months and months without contact with my MD. Once settled into a supposed treatment plan, my LLMD sees patients only every 3 months, but because I often have problems with medication reactions, that just doesn't feel right to me. I am trying to be stronger about insisting on seeing the MD when I really need to, and I would feel that way if I were in your situation right now, so if you don't hear in a couple of days, call again! Ask to be called if there is a cancellation, because you are not doing well and need to see the doctor.
I was at my LLMD's office yesterday and heard the staff answering calls and scheduling appointments and so on, and for them, even the most compassionate of them, it's a matter of schedules and paperwork -- they aren't in our shoes, feeling lousy and needing help. So I try to be very polite but persistent and to make buddies with at least one of the staff. It seems to help when I really need to get a message through or to be seen. I'd call it being a 'nice pest'. And the squeaky patient really does get the oil.
August does sound very far away ... are you waiting for test results? Nothing I know of takes four months to process!
I keep my food/meds/symptoms chart on my computer, so it's all tidy and easy to read. I don't ever show it to the MD tho because they don't have the time to read it. It helps me keep track of ... myself -- since my memory is spotty, the chart really helps me remember how I felt and to evaluate how often symptoms occur and whether they are new or increasing or decreasing. Either a table in Word or a spreadsheet in Excel works, or even a spiral notebook would do!
There are a number of places online where the bands are explained. The one I have taped to my wall here is from the site I mentioned, www [dot] truthaboutlymedisease [cot] com, I find quite helpful.
Take care.
I was at my LLMD's office yesterday and heard the staff answering calls and scheduling appointments and so on, and for them, even the most compassionate of them, it's a matter of schedules and paperwork -- they aren't in our shoes, feeling lousy and needing help. So I try to be very polite but persistent and to make buddies with at least one of the staff. It seems to help when I really need to get a message through or to be seen. I'd call it being a 'nice pest'. And the squeaky patient really does get the oil.
August does sound very far away ... are you waiting for test results? Nothing I know of takes four months to process!
I keep my food/meds/symptoms chart on my computer, so it's all tidy and easy to read. I don't ever show it to the MD tho because they don't have the time to read it. It helps me keep track of ... myself -- since my memory is spotty, the chart really helps me remember how I felt and to evaluate how often symptoms occur and whether they are new or increasing or decreasing. Either a table in Word or a spreadsheet in Excel works, or even a spiral notebook would do!
There are a number of places online where the bands are explained. The one I have taped to my wall here is from the site I mentioned, www [dot] truthaboutlymedisease [cot] com, I find quite helpful.
Take care.
thanks for all the advice and information! i tried really hard to find out more about the 41 dKa band but there really isn't much about it online, so i truly appreciate your response!
i have not been feeling well for several years... but it didn't get to the point where i could no longer work and do regular everyday things until 2 years ago. i just want to know what on earth is going on with me! without a diagnosis it's hard for me to have hope of getting better because if i don't know what the problem is i can't get treatment for it.
i called my LLMD and left a message but nobody has returned my call yet. my next appointment is in august, and i am not okay going 4 more months before making any more progress on getting a diagnosis. this has been going on too long. i hate that i have to keep looking, because it is just so exhausting! i have a new regular doctor here, but he just wants to test me for things i've already been tested for that i know i don't have, like lupus and arthritis. and he is refusing to test my horomones except for my thyroid which is so frustrating!
anyway, keeping a chart sounds like a really good idea.... i am going to start doing that!
i have not been feeling well for several years... but it didn't get to the point where i could no longer work and do regular everyday things until 2 years ago. i just want to know what on earth is going on with me! without a diagnosis it's hard for me to have hope of getting better because if i don't know what the problem is i can't get treatment for it.
i called my LLMD and left a message but nobody has returned my call yet. my next appointment is in august, and i am not okay going 4 more months before making any more progress on getting a diagnosis. this has been going on too long. i hate that i have to keep looking, because it is just so exhausting! i have a new regular doctor here, but he just wants to test me for things i've already been tested for that i know i don't have, like lupus and arthritis. and he is refusing to test my horomones except for my thyroid which is so frustrating!
anyway, keeping a chart sounds like a really good idea.... i am going to start doing that!
Mmmm, yes, Igenex is considered pretty good by LLMDs. It's the lab my LLMD uses.
The 41kDa band is, acc. to truthaboutlymedisease [dot] com, identifies the presence of the flagellin [whip-like tail] of a spirochete [a spiral-shaped bacterium], and Lyme is a spirochete. However, there are other spirochetes too, so a positive 41kDa band can be Lyme or something else ... the website above says that band 41 is one of the first to show up on a test, so it signifies a very recent infection and maybe the other bands that indicate only Lyme and not just any spirochete would become reactive after some time passes.
If you've been sick a while, tho, then it would *logically* indicate that you may not have Lyme. HOWEVER another possibility is that if you've been infected for a long time, your body is just tired of making antibodies to the bugs, and so not much shows up on the test.
That's why the tests have to interpreted in light of your symptoms and exposure to the bugs -- the tests are nowhere near 100% accurate. So don't get discouraged yet, you gotta talk to your LLMD. It's also possible you have a coinfection but not Lyme itself ...
I know how you feel. I get all excited about making progress, then something like your tests results happens to me, and it's a major downer. So take charge: schedule that next appointment, and focus on taking care of yourself nutritionally. I also keep a chart each day of what I eat, what meds and supps I take, and how I feel. Some would say that's obsessive, but it is the only thing that keeps me focussed and feeling some sense of control...and I look back before my LLMD appointments to summarize what's happened, and I'm usually surprised by trends/events I hadn't seen as a pattern.
*When do you see your LLMD next?*
Hang in there. We've all been where you are, and we (I) still go there pretty regularly. Keep the faith!
The 41kDa band is, acc. to truthaboutlymedisease [dot] com, identifies the presence of the flagellin [whip-like tail] of a spirochete [a spiral-shaped bacterium], and Lyme is a spirochete. However, there are other spirochetes too, so a positive 41kDa band can be Lyme or something else ... the website above says that band 41 is one of the first to show up on a test, so it signifies a very recent infection and maybe the other bands that indicate only Lyme and not just any spirochete would become reactive after some time passes.
If you've been sick a while, tho, then it would *logically* indicate that you may not have Lyme. HOWEVER another possibility is that if you've been infected for a long time, your body is just tired of making antibodies to the bugs, and so not much shows up on the test.
That's why the tests have to interpreted in light of your symptoms and exposure to the bugs -- the tests are nowhere near 100% accurate. So don't get discouraged yet, you gotta talk to your LLMD. It's also possible you have a coinfection but not Lyme itself ...
I know how you feel. I get all excited about making progress, then something like your tests results happens to me, and it's a major downer. So take charge: schedule that next appointment, and focus on taking care of yourself nutritionally. I also keep a chart each day of what I eat, what meds and supps I take, and how I feel. Some would say that's obsessive, but it is the only thing that keeps me focussed and feeling some sense of control...and I look back before my LLMD appointments to summarize what's happened, and I'm usually surprised by trends/events I hadn't seen as a pattern.
*When do you see your LLMD next?*
Hang in there. We've all been where you are, and we (I) still go there pretty regularly. Keep the faith!
i posted a picture of the tests so i wouldn't have to type it out... but it didn't work.
my only positive band is 41kDa on both the IGG and IGM.
how common is it to only have one band? do you think i have lyme or something else?
my only positive band is 41kDa on both the IGG and IGM.
how common is it to only have one band? do you think i have lyme or something else?
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