well my igeneX test has been sent in. i am really nervous for the results, mainly because i have a slight malar rash and if i don't have lyme, it's lupus. i haven't been myself lately. i am very agitated and though i am excited to possibly finally have an answer, i fear it. lupus is so terrifying to me. i am only 19 years old, haven't even begun college yet and the thought of having a chronic disease makes me hysterical. i haven't been able to control my tears.
i keep thinking, i definitely have lyme because i herxed on zithromax BIG TIME last month, but then i say, well i have a malar rash and low wbc which are telltale signs of lupus. all antibody tests for lupus negative so far, but i am so afraid to be retested. i have pain on my scalp and head, like i feel some pimples and i keep thinking they are discoid sores or something and that i am going to go bald.
i know this all sounds ridiculous and immature considering what all you brave people are facing, but aside from you, i have no support system. my family keeps telling me it's all in my head. doctors won't listen to me, my sister, who is my best friend, isn't speaking to me, and i just got involved with a guy who i seemed to have made a connection with, who turned out to have schizophrenic tendencies and he doesn't know how to love. i am feeling so rejected, displaced and vulnerable.
with all this said, i am just hoping to have some answers with this test. i need something on paper to put all my crazy symptoms together. sometimes i question my own sanity. no one can find anything wrong, yet nothing feels right.
thanks to everyone for your kind words, always. i am just having a really hard time with coping strategies right now. i am sure you have all been to this very depressing point where i am...
posted
I understand your fears. It must be very frightening, especially with no support system in place.
If it makes you feel any better, many people with Lupus actually have Lyme as the cause. I believe they are now treating some cases with abx.
What I'm trying to say is that you are far better off if it's Lyme, because you will get treatment. It perhaps would have been dxd as Lupus when it really isn't that.
You just found the right info at the right time. I think you'll benefit from treatment with abx either way.
Do you have an LLMD all ready lined up?
The waiting is SO HARD!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Pru.
Welcome to the weird club where a diagnosis is actually a freaking RELIEF!!!
We finally get to wave a piece of paper around and say, "Look, I'm not crazy after all!"
Well, maybe we ARE crazy, but at least NOT ABOUT THAT!
It's a very stressful time, waiting for IGeneX results.
If you haven't been to an LLMD, find one and get there, because as you must know, Lyme's a clinical diagnosis. The paper is nice, but an experienced doc doesn't have to have it.
Hang around here long enough and you'll find some good resources to educate those who want to learn about what's wrong with you. As you get better and stronger, just toss the rest of 'em a haughty look.
I'm not really sure what a haughty look is. You may need to consult "Gone With the Wind" for practice.
Post often, especially when you're feeling sad or scared. We've all been there (not to mention occasionally going BACK there!!!!)
Big hug,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I had alot of lupus findings when I was acute with lyme...dont stress yourself as you will be ok...there are alot of guys out there that do know how to love and you will find them..look up the marshall protocal and you will find that other people got over it...so you will too...if you need a lyme doc let us know... eric
Posts: 593 | From long island ny | Registered: Apr 2006
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posted
I had TERRIBLE, TERRIBLE anxiety prior to my diagnosis from Igenex. I have never ever experienced anything like this before; I turned into a hypochondriac. I'm not saying that this is occuring to you, but you should consider the fact that LD can really mess with your head BIGTIME. I feel what your going through. Because the symptoms dont appear severe, and the blood tests are normal. Doctors dont give a #### what you have to say, they just say you have mental issue. After hearing this over and over, and hearing such a stupid and arrogant remark from a doctor I exploded and told him off.
ANYWaysssss Your symptoms sound VERY much like LYME>
Have you been in any forested areas? When did your symptoms start? I"m your age too, if you wanna chat - [email protected]
cheeers
Posts: 170 | From Vancouver | Registered: Apr 2006
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bettyg
Unregistered
posted
quote:Originally posted by pru:
well my igeneX test has been sent in. i am really nervous for the results, mainly because i have a slight malar rash and if i don't have lyme, it's lupus.
i haven't been myself lately. i am very agitated and though i am excited to possibly finally have an answer, i fear it.
lupus is so terrifying to me. i am only 19 years old, haven't even begun college yet and the thought of having a chronic disease makes me hysterical. i haven't been able to control my tears.
i keep thinking, i definitely have lyme because i herxed on zithromax BIG TIME last month, but then i say, well i have a malar rash and low wbc which are telltale signs of lupus. all antibody tests for lupus negative so far, but i am so afraid to be retested.
i have pain on my scalp and head, like i feel some pimples and i keep thinking they are discoid sores or something and that i am going to go bald.
i know this all sounds ridiculous and immature considering what all you brave people are facing, but aside from you, i have no support system.
my family keeps telling me it's all in my head. doctors won't listen to me, my sister, who is my best friend, isn't speaking to me, and i just got involved with a guy who i seemed to have made a connection with, who turned out to have schizophrenic tendencies and he doesn't know how to love.
i am feeling so rejected, displaced and vulnerable.
with all this said, i am just hoping to have some answers with this test. i need something on paper to put all my crazy symptoms together.
sometimes i question my own sanity. no one can find anything wrong, yet nothing feels right.
thanks to everyone for your kind words, always. i am just having a really hard time with coping strategies right now. i am sure you have all been to this very depressing point where i am...
michelle
Michelle, I couldn't remember what you wrote, so I copied it to address certain things:
1. I've been diagnosed 3 times with LUPUS; never treated for it. In fact, 1 MD told me I had it & walked out the door before I could quesion him!
2. Crying is fine; get out those frustrations/anxiety in yourself. We do it as needed; don't put a false smile on when you're feeling like crap.
3. "have pain on my scalp and head" .. I've had this for a long time and my scalp went totally bright red! My former co-worker informed me of that when it happened. I have snow WHITE hair, and hadn't noticed at the time.
4. "sounds ridiculous and immature" ... no, these are your GUT feelings; don't be embarrased from what YOU are feeling/going thru. We all handle things differently. Not immature in the least.
5. You are also looking at 2 diseases that are life-threatening; not easy to do at 19. You have NOT yet begin to live, and put your mark on society and contributing towards making it a better world for others.
6. My family left: 3-50ish brothers/spounses do NOT recognize me or my illnesses. NO SUPPORT whatsoever. I've not gone to my last 2 family xmas get togethers due to this and my many other lyme symptoms:
need DARK rooms; not all that light/glare/reflection
and REDUCED SOUND; noise drives me up a way;
away from chemicals: smoke on 3 relative's clothing, excessive perfume, hair spray, cleaning products, etc.
They do NOT call, write, or email! 2 refuse to give me their email or have BLOCKED anything from me.
Oldest bro. sent me a nasty email (1st/last ever) 2-04 that he doesn't like the way I say things; they are said for self-purpose and my OWN AGENDA?, and the kicker: "you don't contribute to SOCIETY"! We have not spoken since.
Get rid of the family weight dragging you down; you are better off without them since they aren't there supporting you.
You are vulnerable right now, be careful online as well..ok!!
We're here for you 24/7...look us up anytime; someone is always on here! Take care now, and try to RELAX. You will finally know your diagnosis SOON!
posted
Pru- I am old enough to have a daughter your age and I freaked out at the lyme diagnosis,too-and was tested for Lupus as well-it still lurks in the back of my mind-what if I have Lyme AND Lupus?
It's hard to have one's life derailed at any age.I have been sick for a while, recently lost my job.I have a teenager who doesn't seem to get it- that Mom is sick and needs her cooperation and respect. She calls me retarded because of my brain fog. Yes, those closest to us can be the cruelest.
For me-it feels like that tunnel ahead just got a whole lot longer-and I cannot see the light at the end-except for the hope I garner from this website-so I keep trudging the road to happy destiny.
posted
pru- i am a 25 year old with lymes and sjogren's syndrome. they thought i had lupus at the beginning. i am walking proof that you can do it!
i know that it is terrifying to have all this happen at 19. i got very ill at 17. some days i felt so bad my parents had to support me so that i could walk. but you what? i went on to college and made sure that i led a normal life.
i know its hard because you don't feel "normal." you might have to find your new normal, but that is okay.
it is normal to be extremely nervous. i still get very nervous everytime i go to the doctor, and i know that the meds i am taking are making me better.
don't let yourself go into denial. when i finally got the lymes diagnosis (i got the sjogren's diagnosis right away) i went into denial. i didn't function for close to two months. i stopped exercising and i stopped feeling. its dangerous.
one thing i do that really helps me is to have a goal of something i'm going to do while i am doing treatment. i chose to learn chinese (yes, i know it sounds strange.) it is my goal that by the time i'm done with treatment that i will have a good handle on the chinese language.
i can see that i am making progress in my chinese even when i don't feel that i'm making any progress in getting better. it is empowering.
stick to it--you can do it. there are plenty of people here on this site who are sick but are forging ahead. it is possible!
-------------------- "We imagine that when we are thrown out of our usual ruts all is lost, but it is only then that what is new and good begins. While there is life, there is happiness. There is much, much before us." -Pierre, War and Peace Posts: 14 | From USA | Registered: Apr 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hey pru
hang in there.
I have been where you are and I do feel for you and know how hard it is.
Do you have a LLMD(lyme literate doctor) lined up to interpret the igenex tests? This is very important because what bands "light up" is diagnosistic.
Remember CDC neg doesn't mean sqaut.
See the below link. It can describe better than I could..
A good LLMD goes by your symptoms, and you sure do have ALOT of lyme symptoms!
Take care and try not to worry. I am sorry your family members aren't as supportive . I have found, sometimes,it is hard for a regular person who doesn't have lyme to understand.
Stay in touch. We all understand and want to help
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Michelle,
You never have to apologize for anything you post on here unless it is mean or includes a Dr.'s name. Besides that, your post is exactly what this space is for.
I know this is all hard. While I was looking for a diagnosis, I had an abnormal blood test come back that suggested leukemia. But your Igenix results will come soon, and you will be closer to an answer.
As for Lupus vs. Lyme, yes some people with Lupus diagnoses have found it was rally Lyme. There are also many people who are living fulfilling lives with a Lupus diagnosis. So neither Lyme nor Lupus means the end.
Family support is important. Have you told your sister you miss her? Maybe she just doesn't know how to act around you. Maybe she is scared of what will happen to you. And maybe getting a diagnosis will confirm things for your whole family.
If you like to guy you are dating, then stick with it. People figure out how to love. And if he's about your age, then he really isn't alone in not knowing how to love. I don't think most guys my age (31) know how to love.
And, because he has a misunderstood health issue, he might be more understanding to what you are going through. But, if his condition will add stress to your life, then be aware of that. You don't need more stress now.
I keep meaning to ask, is Pru from Charmed?
I hope you get the answers you are looking for. Best of luck.
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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thanks so much for all the positive reinforcement. You always know exactly what to say to put a genuine smile across my face.
A few things i want to point out...
5dana8 says the following:
"Do you have a LL'veMD(lyme literate doctor) lined up to interpret the igenex tests? This is very important because what bands "light up" is diagnostic."
IgeneX doesn't tell you whether the test is positive or negative? I thought they put a (+) or (-) next to each band. if it isnt "scored" as positive or negative, what is my GP going to tell me when he receives it? i dont have LLMD lined up. i was planning to see a holistic neurologist who is keen on curing lyme, depending on the results.
To Aneik..the guy i might have had a relationship with turned out to have some serious problems.. he loves people and then he hates people. he is very manic/schizophrenic. it was hard to tell in the beginning, especially since for my age i am a bit more intelligent and learned. i tend to not connect with a lot of people because we are just on different levels. he was also very intelligent, very kind, but very toxic for me, however. we wont be seeing each other anymore. this alone is very hard on me. he was even a nonsmoker!!
pru does not come from charmed, but from my mainoon cat, prudence, which comes from the beatles song, dear prudence.
thank you all! today I am feeling a lot lighter. the sun definitely came through my window today.
quote:Originally posted by pru: if it isnt "scored" as positive or negative, what is my GP going to tell me when he receives it? i dont have LLMD lined up. i was planning to see a holistic neurologist who is keen on curing lyme, depending on the results.
Precisely the problem, Michelle! Neither dr will know how to interpret the test. If it says negative, they will believe it's negative....when really it may be positive!!
That doesn't make sense, does it??!! But that is exactly the problem with allowing regular non-LLMD's handle this. They don't know about what the bands signify.
Please obtain a copy of your test results [it is your RIGHT] and post them here when you get them. We can help you interpret them.
In the meantime, read this several times over. That's your HOMEWORK from the teacher!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Good responses you have gotten. Do post your test results.!!!
II do have a daughter about your age, would hate to see something happen to her OR you. to be sick that is!!
What I so most wanted to say is, I know it would be hard because it is hard to be alone, but drop the guy who is unable to love you. You dont need more bagagge to weigh you DOWN> The only direction THIS Guy is going to take you. Not a healthy relationship from where I am viewing. None is better than a bad one, ask others, they will say same, I bet!!!
You will get more 'love' here than you ever thought possible. Try it, might like it!! And that guy you talked of, its not love there, doent sound like to me. Time always makes it worse, not better.
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
GP interperting results thats a nono Get a llmd and get a copy of the tests its your right the whole thing. WesternBlot Elisa luat, etc Did your GP have you on high dose of abx's before doing tests?
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But that is exactly the problem with allowing regular non-LLMD's handle this. They don't know about what the bands signify.![[Razz]](tongue.gif)
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