Hello, I haven't been on in a while, it wasn't helping much and thought I should just take a break from all this. But I figured I had to come back some time. I guess I am going to ask a question.
Of course, everyone on here is probably in some type of pain. I have been having chest pains now. I am usually in some pain somewhere and right now its current migration has halted in my chest. Sometimes I feel a pain right below my ribs on the left side and it gets worse until it peeks and then gets better. It doesn't happen a lot and it doesn't last but a couple minutes.
Also, pain under my ribs on left side. Which also comes and goes. Peeks and then goes away. Right now I am having pain under my arms and down just a little right on my ribs. Hurts to press on. And hurts when lifting my arms sometimes.
Also, anytime I press on my ribs no matter when, they hurt bad. And I can stop pressing and they continue to hurt for a while. I don't know why.
Anyone else have this?
What kind of pains do you have and where?
Just thought I would ask. Well, it is late for me and I am very tired from going to school. Good thing Spring Break is all of next week! I am going to sleep the whole time. And oh yea, I am going back to my ID specialist Tuesday. Wonder what kind of crap he will tell me now.
Just another let down. And no progress. What's new.
Oh yea, I have been working on a small track in my back yard. And when I use a rack or anything I have to grip my hands hurt really bad and my fingers get really stiff and hurt. They never did this before, but maybe it is normal. Whatever normal is.
Well, I guess that is all for now. Thanks so much. And have a Great Weekend.
[ 20. April 2007, 09:21 PM: Message edited by: wilsongal22 ]
Posted by Geneal (Member # 10375) on :
Dear Christi,
Wondered where you have been...
Rib pain is very common with Lyme and so is chest pain.
However, I know my chest pain is not heart related as I've had a thorough cardiac work up with nuclear stress test done.
May want to err on the side of caution re: left chest pain.....Lyme can cause issues with your heart.
Tell your parents about that pain...
I have pain off and on....well, just about everywhere.
The other night I had one toe (the middle one) cause me so much pain....it woke me up!
I have stiff fingers, pain in my fingers, knee pain, back pain, pain in my rear, pain in my breasts,
eye pain, foot pain, head pain, scalp pain, muscle pain....do I need to go on?
Thank goodness that it varies in intensity and location.
I hope that you are continuing your quest for a diagnosis and testing for Lyme.
Hugs,
Geneal
Posted by valymemom (Member # 7076) on :
Yesterday I read an article posted taken from the lyme magazine on Dr. Jones. In it he spoke about knowing how to check chest area when examining the kids he sees. (Other physicians miss this)
I think babesiosis can also cause these kind of problems. Has your doctor treated for this co-infection?
Posted by wilsongal22 (Member # 11210) on :
Thanks for the replies.
Well, I haven't been on much because I was just getting so caught up in everything. And kind of angry at myself for not doing anything about all of this. I just thought it would be good to take a break plus, my story I had was getting large and people didn't like that so.
I don't really have specific medical questions, but they told me to put it in general, but I have noticed people posting different stuff here that has nothing to do with medical questions which kind of made me angry. Plus, if you have noticed, more people are on here than general anyways. So, if it is on here more people see it.
But, anyways, I have started to notice more stuff even now. I have been feeling worse. Frequent pain all over my body. Also, I don't know if whatever I may have has anything to do with the fact that I am not doing as well in school. I am still doing really good, but it is getting harder for me.
I am constantly sleepy. And I have been making myself stay up so I can study and stuff. I have never had to study before, but my grades are going down and I got really angry so I am doing whatever it takes to keep them up.
I didn't do very good on the test for the book I had been reading, because I couldn't remember most of it. And math because I am having trouble understanding it. Sometimes I get it and I can do it, but them other times I forget everything and have no clue what I am doing. So, my math grade is dropping.
Right now the only thing keeping me going is that I want that dirt-bike and gear really bad! So, I am working hard. Saving money a lot to.
I am going to Huntsville Tuesday for my ID doctor and we are going to there mall. Which is way better than our mall! I am not taking any money to spend there and that is going to be hard. I am saving every penny!! I am doing good there. I just keep thinking...dirt-bike...dirt-bike....it keeps me going though!
I am also still bruising. I have lots of little brusies on my legs. And I am working on a track with jumps and stuff in my back yard and my fingers are still hurting pretty bad from that, but...nothing I can do about it.
I don't think my bone bruise in my knee has heeled much either. It is hurting worse lately. This week would be a good week to be on krutches since I don't have school. Thank God! But, I don't think I can do that. I tried last night and the pain onder my arms was bad and it hurt my hands and wrists a lot.
So, basically to put it in one sentence, I am doing worse and in pain everywhere still, but what is new!
Well, thanks for the replies. Oh and the question about the co-infection, I haven't been treated for babs(whatever it was..forgot) because I haven't been diagnosed yet. I don't know if I have Lyme, but I believe I do. So, I am not sure about co-infections and have not been treated.
Ok, well, thanks so much! See ya!
Posted by wilsongal22 (Member # 11210) on :
And I have all those pains listed except I don't think my scalp has hurt and my eyes have actually hurt before, but they hurt when I am sleepy, but I think that is 'normal'.
[ 15. April 2007, 03:19 AM: Message edited by: wilsongal22 ]
Posted by wilsongal22 (Member # 11210) on :
Well, I am so glad to see so many replies. I hate to dwell on pain, but I figured a lot of people on here could relate.
But, besides the point, I am really nervous about going to the ID specialist tomorrow. I am scared because I know what he is going to say. Because he said it the first time. 'There is nothing wrong and you shouldn't worry. You are the healthiest sick person I have seen."
Obviously, things aren't always as they seem. Some of the healthiest people on the outside are the sickest on the inside. But, apparently he doesn't believe so. So...I am really scaried.
I am already feeling the nervous sickness I get. I have a strange feeling I am going to regret going. Strangely enough, I want to be a doctor, but I hate going to them. I don't know why...? Hmmm...anyways. Any advice on what I should say to him?
My mom said she would ask about Lyme and see about getting me tested just to see. But, she knows if can give false negatives...mainly because I never let her forget it!
Also, I got my brochures from the lyme association today. They were really helpful.
Well, I guess I should try to get some sleep, which is never going to happen, but I will give anything a shot. So, thanks so much and wish me luck!
Posted by wilsongal22 (Member # 11210) on :
Well, I will start by saying I am not happy. I went to the ID specialist hoping he would say something about my high ASO titer. He said the same thing he said 10 months ago. 'I don't know. You are the mystery patient.'
So, all I got out of it was that he agreed with all my other docs that I am a mystery. But, he said to get another opinion from a bigger place and agreed with my other docs to go to the Ped. Rheumy at UAB in Birmingham.
Also, he said because of the strep to get an echocardiogram. He said I might want to then asked me questions about exercise and stuff. And he asked when I ride a bike or anything if I notice shortness of breath or tiring more easily than 2 years ago. Which was a YES. So, I am now going to a cardiologist for the echo, and a ped. rheumy. Yay! Not. More docs to add to my list.
Does anyone else have a problem explaining symptoms? He was asking about my joint pain. It migrates and comes and goes. Nothing helps, nothing makes it worse. It has a mind of its own and he didn't seem to understand what I was saying.
Anyone else have that?
So, basically, he said he didn't know and I should get another opinion, AGAIN! So, I guess I am off to more docs who can tell me there is either nothing wrong or I am a mystery.
Either way, I get agree. I don't know what to do or say anymore. I am so tired of all the long trips and no answers. They are pointless and very tiring. I didn't get any sleep because I was to worried.
I had to try and think about other stuff, listen to music, and calm myself so I wouldn't get to worried. It was very hard too. My heart was racing the whole time he was in the room. It was beating outside my body. And I got a really bad headache.
Well, I am very very tired now so I thought I would update for comments before I went to bed.
Thanks so much and let me know what you think. Any comments at all.
Oh and has anyone ever had an echo? If so, can you walk me threw exactly what they do?
I had one when I was little because I had an irregular heartbeat, but they said it was nothing to worry about.
Well, thanks so much.
Posted by trueblue (Member # 7348) on :
Christi, An echocardiogram was the coolest test I ever had. It's an ultrasound, so no pain or anything, yay! If I remember correctly I wasn't supposed to eat beforehand.
Basically you lay on a table and the sqirt gel on you and move the wand around. at one point they had me lay on my side to get other views.
They actually can see you heart working. (Ask them if you can see also!) The first time I had one done it was facing me and it was totally cool. How often do you get to see your own heart beating?
I had the first one done 14 years ago and it showed a mitral valve redundancy with no regurgitation. I've just recently had another, as it has been a long time. This one shows a mitral valve prolapse with slight leakage. (Oh, there was something about the tricuspid valve but he seemed completely unconcerned with that.)
The cardiologist seems to think it is the same as the first time and the testing has just got better. I'm relieved that nothing much bad has happened heartwise in 14 year.
Anyway, definately don't sweat the echo, is pretty darn neat. I hope you get some answers and help really soon.
Posted by Truthfinder (Member # 8512) on :
Christi, shall we assume that your mom DID NOT ask the ID doc about Lyme and possibly getting you tested?
Tracy
Posted by wilsongal22 (Member # 11210) on :
Ok, he was kind of upset that we were back and he didn't have an answer.(he is a loud talker and we heard him outside the door talking to his nurse.)
My parents asked about underlying conditions(Lyme) to see what he said without actually asking about Lyme. But, they pressed him a lot about it. And he said yes it could be an underlying condition like that.
He said he wants to find the cause of my ASO being high instead of treating it right away.
He said I could have a special protein in my body that is being produced keeping it high. Or that I have been exposed so much to strep that I have built up great immunity. So, when I am exposed I fight it off and never actually get the infection. Which can't be right because I just had strep a couple months ago.
But, he said we needed to find the 'cause' for it being high. And that he really had no idea. We all kept asking questions and he would think and then say he really didn't know. I am the mystery patient to him and my other doctors.
My ortho went outside in the hall to read my MRI and asked the other doc in there if he could help because he had no clue what was wrong, and even that guy said he didn't want to see me because he had no clue either!
So, about the lyme thing, had he run blood tests we were going to ask him about it and ask for some tests. But, he just looked at me funny and said he didn't know, get another opinion. So, we didn't bother.
He thought we were crazy for going that far to see him for nothing. But, his nurse wouldn't let us ask him the questions over the phone so.
Well, the echo sounds really cool. Maybe it will show something so I can make some progress. Either way I still have to go all the way to Birmingham to see yet another doctor. Fun!
Well, I think that is it. Thanks for the replies.
Posted by TNJanet (Member # 10031) on :
Christi,
I'm sorry your appt. with the ID duck didn't go well. I would think by your reading all the information here that you already knew what to expect.
Don't know if you followed up with peoples' offers to speak to your parents or have someone explain that you need a reliable test for Lyme from Igenex.
This is so important that until you have that test run and by that lab you may well never know what is wrong with you. You have so many lyme symptoms and it appears they are getting worse.
Would your parents be willing to order the WB tests from IgeneX in Palo Alto, CA. You would need a doctor (of any kind) to sign off on it and draw the blood based on the IgeneX protocol and then the results would be sent to that doctor. You would need to ask for a copy and you can report here the findings.
THEN, if you have positive bands on the WB, you would have much more ammunition to present to your parents about needing a LLMD. Going to the docs you have already seen is a big waste of time and money.
I hope you will go through all the posts sent to you offering help with your parents. These are very generous support offers and you should take advantange of them.
If you have Lyme and continue to go untreated, you WILL get much sicker and that could cause you to not be able to finish school or do anything you like such as going to a mall or riding a dirt bike. I'm sure you wouldn't want to end up being bed-bound or in a wheel chair.
I STRONGLY urge you to take up the offers you have had to speak with your parents. I can think of no more advice to give you.
Best of luck, Janet
Posted by paulamea (Member # 11365) on :
I received this in my e-mail today. It seems to be a test that your insurance would pay for.
Sandi Lanford wrote:
The New Lyme test 'Rapid Antigen Identification of Bb by Flow Cytometry' has been approved for Medicare and insurance payment.
Both the laboratory and test have received State and CLIA Certification. The test is NOT in research status. For those of you who don't understand how important the STATE & CLIA Certifications are, let me explain.
For STATE Certification - the Central Florida Research Lab was inspected by a team of Inspectors from the Florida Agency for Health Care Administration.
For CLIA Certification - the CLIA program (Clinical Laboratory Improvement Amendments) is administered by the Centers for MEDICARE and Medicaid Services (CMS), an agency of the Department of Health and Human Services.
CLIA CERTIFICATION is required for all Laboratories performing clinical laboratory testing that is considered valid. You can view these Certifications and testing validations at the Central Florida Research website: www.centralfloridaresearch.org
Everyone has said we need a better test - well here it is folks. The lab was required by the state to use the antibody test the Western Blot as the 'Gold Standard' in the testing for approval, and the new test out performed the Western Blot by a appreciable percentage. Both the lab and the test passed first time around without any recommendations.
Yes, of course, I knew what to expect. I didn't expect nothing, not even an answer of any kind.
I have talked with my parents about the test. They didn't say much, but they are at least willing to get me tested here and they didn't say anything about Igenex, but, OF COURSE, I told them it was best.
I think they are still slow on the whole thing, as they can't tell a difference in me. I would think they could. As I get angry I am aalways in a bad mood and all kinds of stuff, but I don't think they notice. I don't know how they couldn't. I know for a fact my mom knows it must be lyme.
She was telling my dad yesterday in his office that I had narrowed it down and that doctors don't help much when it comes to something like this, it is usually the patients who find answers. So, I know inside she believes that is what it is as well.
I honestly believe I have Lyme. I have read so much on the net and talked to many people on here, which I really appreciate, and I feel it is the only answer. Plus, it is much more than any doctor has said.
Lyme is the only thing that fits. So, I feel I must have Lyme.
And, when he said I needed to go to Birmingham or Vanderbilt to see another doctor, I thought about the people who had offered to meet me in Birmingham. And how much I would love to meet them there and talk.
I almost feel bonded with the people on here because everyone understands me and knows what I am going through. No one else does. And yesterday sitting in the docs room listening to him babble, I couldn't help but grasp my Lyme bracelet and think about all of you.
How you guys have had to go through this before you ever got diagnosed. I was so angry because I knew everything that came out of his mouth, and have for 2 years now. I wanted to break down and just yell at him.
It was that horrible feeling inside that made me just want to end everything. I am so tired of going to doctors and no one helping me at all. I started to just ask my parents how far they were really going to go before they listened to me.
How many doctors do I need to see? How far are we going to travel? How much money are we going to spend? When are you going to stop complaining about having to go around the world all the time?
They will say something about us having to go and spend money and it makes me feel bad. I didn't ask to go. I didn't want to go. I knew what he would say. So, I just said 'well, I'm sorry. It's not like I wanted to go anyways.'
I am just SO sick and tired of going for no reason. For having to worry so much about doctors and still get nothing. It is very hard for me to go to a doctor because I get really scared and nervous and I can't control it. I know that is odd since I want to become one, but I hate going to the doctor.
They have never helped me. I hate medicine because I have never had any that helped me. So, I think that is why I hate going to the doctor so much, is because I have never gotten anything out of it and they always say there is nothing when there is.
Ok, I am sorry. That was probably over the line. And very deep. My bad. I just can't help it.
Well, thanks for being there and listening to me. It really does mean everything to me. Thanks.
Posted by wilsongal22 (Member # 11210) on :
How could I get that test?
Posted by paulamea (Member # 11365) on :
Hi christie,
Just wanted to share the link about the new Lyme test with you.
My personal opinion however is that any lyme test should be done by a LLMD as he would know the best time (on/off antibiotic challenge, etc) and the best method of collection, etc. as well as how to best interpret the results.
Again, I want to say that I have followed your story (5 pages) and just want to say again to you that I would certainly be glad to talk with your parents, help make arrangements for an appointment with the LLMD my daughter and I saw in Mobile as well as help with any other obstacles that may come up.
My daughter (23 now) and I were exposed to Lyme in 1988 (in Phenix City, AL). Subsequently as our conditions deteriorated, we were diagnosed with Chronic Fatigue, Fibromyalgia, Attention Deficit, Psychosis, etc., etc. Took all of the medications for all of the above and still did not see much improvement until I read an article in Good Housekeeping (http://www.geocities.com/gallisto1/Good_housekeeping.html) and realized we were suffering from Lyme Disease. It then took another 6 months to find a LLMD and start treatment. Just a little note here, I work for a physician and have worked for him for 20+ years but he never helped or even believed we had Lyme.
Anyway Christie, once again I am offering to help in any way I can. Please, please talk with your parents and let them know that all of this yo-yo doctor stuff isn't getting you anywhere (or at least doesn't seem to be). If you don't have Lyme Disease, you should know that as well and only a complete evaluation by a LLMD can let you know how best to move forward at this time.
Posted by paulamea (Member # 11365) on :
Hi again Christie,
Just 2 more things to say:
1) I took my daughter to UAB Infectious Disease and saw 2 specialists. I had all the medical records, etc. which they never even looked at and told me """your daughter doesn't have Lyme Disease because we don't have Lyme Disease in Alabama". I was furious and, incidentally, have had high blood pressure ever since that time. Anyway, good thing I don't think doctors are God, so I ignored them and moved on.
2) I am gathering information and hoping to hear from anybody who has been diagnosed with Lyme Disease in Alabama. I live in Phenix City and know several people here but I would like to hear from as many people as possible. I will post this request in GENERAL soon too.
Thanks so much
Posted by wilsongal22 (Member # 11210) on :
Ok thank you. And thanks for following my story. Most people probably wouldn't have time, but it means a lot.
I am going to tell my parents I am sick of going to these stupid doctors and they are not helping. I would much rather go to a LLMD. They could probably help me more. At least tell me whether or not I could have Lyme.
Also, I am done with the ID guy. I now have to go to a cardiologist for an echo and then off to the Ped. Rheumy at UAB.
So, so far I have been to GP, Orhto, Rheumy, ID specialist, Orhto specailist, now Cardio., Ped Rheumy. Something is missing? Uh well, anyways, my list is getting to long. That is not right. So far I have at least 6 doctors stumped. They all think something is wrong(maybe it seems that way or maybe they think I am crazy!) And they all can my 'mystery patient'.
I think I should change all my screen names to how-to-be-a-mystery-patient-101. It has a nice ring. I just might change it to something like mysterypatient and then some #. Hmmmm....that is something that sounds fun!
Well, thanks for everything. And I am going to let my parents know. They already know I hate going, but all they say is 'Well, you are the one always complaining.'
Which is not completely true. I usually don't complain unless I am trying to hint to them that something is WRONG!!! I gave up on complaining 2 years ago!
Well, anyways, this is getting long. I really appreciate all you have offered and I will definatly talk to them. Thanks
Posted by Lymetoo (Member # 743) on :
If the doctors can't figure it out, it's usually Lyme.
Posted by wilsongal22 (Member # 11210) on :
Amen! Thank you! That's is what I have been saying! You just made my day!
Well, anyways, I just went in there and told my mom everything on my mind. I told her it was a waste of time to go to this next rhuemy and whatever.
She said she agreed that I shouldn't be going to a rheumy when it isn't arthritis or lupus or none of that. I said well why don't we just go to every kind of doctor and see which one fits.
I told her I should go to a LLMD because at least they could say yes or no and I could move on. It is one of the only things I have not been tested for or whatever and has never been mentioned by my doctors.
I asked her how many doctors I had to see before we told them LYME! She said it is different going a hr. or so to Huntsville or 3 hr.s to UAB rather than 7 hrs. to Mobile or wherever.
I said well all the time we spend going to those and coming back without an answer it would have been worth going to a LLMD that is a lot further away.
Although, I hate to travel. I can NOT get up early because I get sick to my stomach. And I get very nervous traveling and that makes me sick to. I was lucky to make it to Huntsville yesterday. I was so tired I actually wanted to leave the mall and JUST GO HOME. Normally, you can't get me out of a mall and I was BEGGING to leavve I was so tired. I slept while we ate at Taco Bell on the way home.
It was only about hour 1/2 drive and I was worn out. And I haven't been sleeping good. I wake up early for some reason. And can't sleep. Even when I go to bed at 2 in the morning. I get tired during the day but come night time I could stay up all night even when I want to sleep.
But, then I wake up early and still tired. So..I don't know.
Paula, is there any way I could send my stuff to the LLMD without actually having to go that far. Just for my parents sake. I really want to go. Because I know s/he can offer me answers, but my parents are different. If there were anyway to find out if they could help me without going, my parents would then consider taking me, but it would be to much for me to go that far and not any help again and have to come all the way back.
We would be driving about 13,14, or more hours just getting there and back. And the time we spend there. So, it owuld be really hard. It would be hard money wise as well.
But, if there were any other way at all please let me know. I am almost desperate.
I told my mom your story and your daughters and she was convinced! It helped.
Well, I better get going. I have to go to work! What fun! If only I weren't broke! See ya!
Posted by wilsongal22 (Member # 11210) on :
Back from work. Ok, BEFORE I went to work I was having this pain in my side. On the right side just above my hip.
Any ideas? Or just the usual pain?
I have had it before. Once so bad I thought I had appendix problems. Also, I started feeling weak and very tired after working. I even started to yawn. I still have to go back to work, too.
I am really tired and have this pain in my side. I can hardly hold my eyes open.
Well, I am going to go take a nap before I have to go back to work. Bye.
Posted by paulamea (Member # 11365) on :
Hi Christie, you're not going to get an easy way out with this one. No doctor is going to treat you without doing a complete history and physical examination on you. Our first visit was one-on-one for almost 3 hours. It was such a relief just to have a caring person listen to our story and not act like we were psycho. He started my daughter on treatment that very day and she tested positive 3/3 times about 2 weeks later. I was evaluated about 2 months later and started treatment myself.
Peace of mind is well worth the cost and inconvenience of traveling to Mobile. If anyone knows a LLMD closer to you, I hope they can share that information with you. You can drive down maybe on a Sunday and have an appointment first thing on a Monday then drive home if that's more convenient than during the weekdays. They work with you to get the most convenient time.
I had asked you before if you had copies of your medical records. This plus a diary of your conditions and treatments to date is very important. This can be condensed and possibly forwarded to the LLMD who can then let you know if he could be of any help. He has several degrees and has worked with NIH previously so he treats all kinds of problems, not just Lyme. You definitely need a primary care physician to coordinate your care, not just jumping from one doctor to another. I think the average Lyme patient ends up seeing about 16 doctors before getting a diagnosis.
I hope you have printed out these threads for your parents to read. Most important right now is for you to have your medical records then we can go over them with your parents and write a brief history of your illness.
Posted by paulamea (Member # 11365) on :
Christie,
Just another short note but wanted to let you know that there isn't any doctor that you can just drive to and get an answer then drive home better. If you are positive for Lyme, there is a long road ahead. There will be many trips to Mobile, many lab tests, many medicines and many days of feeling so bad that you don't want to get out of the bed (or can't)...I don't want to scare you or make you think it won't get better, because it will, but it's not as easy as one trip cures all...I know you sound very mature for your age, but the reality is that this will take your entire family's support, love, prayers and determination as well as understanding.
Wishing you the best,
Posted by wilsongal22 (Member # 11210) on :
Thanks, but I know that. I am not looking for an easy way out. Nothing in life comes easily. And I certainly don't think one trip and bam it's done. Also, for me that is a long way away and that is the closest. I have searched a lot.
That, sadly, is far away and very complicated. I know you know what I am going throught, but you can't completely understand everything. For me to go to that one appoinment it would mean renting a car, me my sister and brother missing school, my parents losing money to take off, and a very long and tiring trip. Plus, a lot of money. Which we don't have.
You have no idea how much I hate trips. I refuse to go anywhere. Even local field trips with my school. The 7+ hour trip to Mobile would be almost impossible. It would be more expensive if we had to stay over night. And more complicated. I just don't know about it.
I'm sorry. I really want this, but I can't handle this and I feel like I am going to break down. For me, it is way to stressful and complicated and I can't handle it. I just don't know if it will happen so soon. Maybe later, just not now. I'm sorry.
As much as I believe it is Lyme, I just can't do it. I hope you can understand what I am saying and how I feel.
I just wish there were more LLMD's out there(like most people) so that I WOULD be able to go to one closer to me. If one were in Huntsville or Birmingham I would go to them in a heartbeat.
So, I m really sorry, but I just don't think it will happen right now. And I don't think I will be able to handle it when I am able to go. I get really sick when I get stressed and worried and stuff and trips for me is the most stressful.
So, anyways, I'm sorry, and I hope you can understand. I just don't feel comfortable. And I can't. This may just be a mood I am going through right now, but at the moment it is how I feel. so, thanks so much and I really am sorry.
Posted by paulamea (Member # 11365) on :
Christie, this is really not your decision alone as you are still a child. This should be made by your parents and I know they want you to get better. That's one of the reasons I offered to talk with your Mom. I'm sure she's overwhelmed and could use a shoulder. I have also offered to help raise money. I took a 16 year old girl from Columbus, GA to Mobile 2 years ago. She had been to Emory but they said she did not have enough bands to qualify for lyme treatment there. Her local doctor's office P.A. called me, I talked with her Mom over the phone, made the arrangements, called church's for donations and took them myself (which was the first time I actually met them). She was not even able to attend school at the time. She was started on treatment that day. They allowed me to stay in the room with them for the interview and exam. I felt very priviledged that they shared that with me and I also learned a lot.
Anyway, just wanted to make sure you understand that this can be done when school is out. Really only you and you mother need to go, so there shouldn't be a huge problem there and financially there are church's and private people who are willing to donate (some even $25) which adds up. Also your insurance would probably re-imburse you after it's paid.
Don't take this all on yourself. That's why I mentioned family support. Please read the link to the article in Good Housekeeping and let your Mom read that. It was my "Kodak moment".
Posted by wilsongal22 (Member # 11210) on :
Listen, I am sorry about last night. It was just a 'mood' I was going through. Yesterday was a harder day than usual. I was so tired and hurting. I just felt...like....I don't know...like there wasn't much I could do or something.
It just seems surreal. Like it isn't even happening. It really want to go to a LLMD because so many people have told me I had a chance at having Lyme. Which for me, is way more than any doctor EVER told me. But, I just wish one was closer. Also, I don't think my mom could go.
She is not very good at driving places! We would end up in Texas some where! But, my dad does all the driving on long trips. But, I guess they could both come. My siblings could stay with friends or something.
Its just....something doesn't seem right. Like it isn't the right time for me to go to one. Reading the stories on here, people have had to go through so much. So many doctors and so many years.
For me, it has been at least 2 years probably more.(I am pretty sure more just not sure how long) But, could I really be diagnosed with Lyme so soon compared to everyone else?
I know what is right. To go to the LLMD. I am just not feeling it. I am just confused about the whole thing and I don't kow what my parents think. My mom said to wait. And my dad thinks we should just get my ASO down to see if it takes away everything else.
Which he is crazy! Because it won't. My mom understands, but she thinks we should go to all of the other doctors to see what they say and leave the LLMD as our last option. I guess, something like that.
Which is where I step in and say "IT IS A BIG WASTE OF TIME AND MONEY! AND IT WOULD BE MORE WORTHWHILE TO GO TO THE LLMD!"
But, she still doesn't listen! So...I don't know. It just doesn't feel like the right time, but I want to go. I don't understand myself really!
I don't know, but I hate days like yesterday. I woke up early. I had a weird pain in my side. And I was super tired. I even took a NAP! And I started feeling dizzy at work. (I was carrying patio furniture out.) I was so tired. I just felt like falling out, but I had to keep going. Then, last night, I broke down. Spent an hour crying in my bed. Wondering what was going on and why couldn't someone give me an answer.
You know, the usual stuff. I never could figure it out. I finally fell asleep aroound 1:30. So, it was a long, tiring, painful day.
Plus, my knee bruise thing hasn't healed. And it is hurting more now than before. So, I think I may resort to the krutches again. And maybe wrap it. It doesn't hurt as much when I don't bend it.
Well, anyways, I always get so carried away in these comments. I'm sorry. No wonder people don't like to read these. THEY ARE TO LONG! Sorry! Well, I don't want to waste anymore time, so, Have a great day and BYE!
[ 19. April 2007, 03:28 PM: Message edited by: wilsongal22 ]
Posted by Geneal (Member # 10375) on :
Okay...How is this for a compromising suggestion.
Order the Igenex test (call them....they send it to you for free)
Need to mail a check for 190.00 for test 188 and 189 (Western Blot IgG and IgM for Lyme) when you send the blood in.
Get a local doctor to write order and draw the blood.
You send it yourself. It comes in a pre-paid fed ex package.
When Igenex gets test results back, go pick them up and take a good, hard look.
Post results here.
If you have positive indicators, then go to the LLMD in Mobile.....
An LLMD is going to order the test anyway...
Just get it done...then use that for leverage to go to Mobile and see an LLMD.
Just a thought/suggestion.
Hugs,
Geneal
Posted by paulamea (Member # 11365) on :
Hi Christie, sorry you've been feeling so bad lately but my suggestion to you now is that if your Mom is more understanding then she should probably be the one to take you to the LLMD. I could meet you both in Montgomery (she can find that). This could be simple as I explained before, donations, transportation, etc.
You mentioned why should you be diagnosed after only 2 years - we'll this forum is mainly for chronic lyme sufferers. Many people are diagnosed and treated much sooner, within weeks or months after exposure. 2 years will turn into 3 then 4 then 5, then you can join the club. I don't think that waiting has any benefits and it is likely that you could develop neurological symptoms which may be happening already. I think that neurological involvement has to do with how many times you've been exposed and how strong you body's constitution is in the first place. Many people go untreated and yet never progress to neurological problems. So it's a crap shoot but I personnally would not be willing to take that chance.
Also, I've noticed that when you post, you really have never been specific about details including whether or not you have all of your medical records. This is important. But I've been offering to help for over 2 months now and so far you've not wanted my help. This truly may not be the right time for you, so I'd just like to say that when it is the right time for you, you can contact me at [email protected]. The next move is yours.
p.s. Sorry to be so blunt, but this is very frustrating to be watching from the outside, knowing that there are caring people willing to help and not be able to do so. At least find a GP doc and have the Western Blot at Igenex ordered. Most regular doc's have no idea how to read it because positive is not always positive by CDC requirements and they don't want to pursue that. But anyway, best of luck to you.
Posted by wilsongal22 (Member # 11210) on :
Ok, my mom is more understand, but not enough. She can't take me. Trust me we would end up on the other side of the country the way she drives. And I am not specific with my records because I don't have them. I don't need them now and when I do they will be faxed. I have no need to go get them myself.
Also, I want to be honest and say that I feel like I am being pushed to soon. I fell into this 'Lyme circle" 3 months ago. It is to much to handle all at once.
I will see a LLMD when the time is right, but I feel I am pushing it right now. I can't just jump into it so quickly. I really do appreciate the help and everything.
But, I need to focus on helping myself right now. In this very moment. I can't go to a LLMD right now, so I just have to wait and do what I can now.
I believe it is Lyme. So do many other people. But, it could be something else. There is always that possibility. For now, I think I am going to wait until I feel comfortable to move on.
I hope you can understand. It just doesn't feel right to me. I want to learn more from people on here. I want to know everything about it first. I want to have an understanding of everything before I just throw myself out there.
I want to slow down. This is all to much for me. I just spent a long time sitting in my bathroom corner in the dark crying. I can't handle all this right now. I am 15. I have so much on my mind and I am way to stressed. I can't be thinking about all this as well.
I know I have no choice and can't ignore what is going on with me, but I can't force it out there so soon. I have to feel comfortable and ready. I am not ready to be open about everything that is going on with me.
I will gladly update everyone on here with my doctors appointments, results, and any tests I have, but for now I think I am going to take a break.
I can't be thinking about how I am going to get through this all the time. I break down everytime I start to get overwhelmed about all of this and I can't handle that.
So, I will, of course, stay here and being readin and updating, but I want to set aside the LLMD thing and everything for right now.
I hope you can understand. I am not mad or anything like that, I just feel it is what's best for me right now. So, I don't get overwhelmed and depressed and everything so much. Because not only me, but my friends and everyone around me suffers when I do. So, I think a little break would be best.
I appreciate all the help and support. It means so much to me. I hope everyone on here can keep being so supportive. It keeps me going when I am down! Well, it is late and I am starting to feel the sick pain from it so off to bed I go.
Again, thanks and have a great weekend!
Posted by wilsongal22 (Member # 11210) on :
Since I can't do much myself, I was wondering if there any remedies or whatever that I can do myself to help. I figure if I can't do the LLMD thing right now maybe I could try something else just to see.
Is there anything I can do myself?
Thanks.
Posted by Ruth Ruth (Member # 11059) on :
Prayer. It's free and no one can stop you from doing it.