It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Lyme Disease Message Board

  • I don't know what to say but I am saying it with tears

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 12-26-2004, 04:48 PM   #1
    Senior Veteran
    Join Date: Nov 2004
    Location: Phil. PA
    Posts: 615
    dealer1111 HB User
    I don't know what to say but I am saying it with tears

    I don't understand this disease this is all I will say, but I want to talk about things I do know about.

    My cousin Carolynís daughter has had a bulls eye rashes from 3-separet ticks they found over the last years, treated short term, has many headaches currently. Not under any treatment! Never tested for other tick born illnesses?

    My doctor, his wife, his daughter all have Lyme; lucky for them and me he has first hand knowledge. Sad anyone is sick with this.

    One of my best friends sisters kids, three boys -all have been treated twice for Lyme Bulls eye rashes! But all short term with no follow-ups!

    Jason my Dads friend bit by tick has a bullís eye from a tick bite!

    My friend Al has a friend in bed fighting for her life from Lyme!

    My employees, sisters friend many-years misdiagnosed, confirmed! Six weeks of antibiotics, stopped treatment living with headaches!

    My sister is dating a man who during the summer was treated short term for Lyme, symptoms have returned! I am waiting to speak to him.

    My sister Sandiís best friend did not find the bullís eye, but was diagnosed treated short-term antibiotics!

    One of my long best friends father just found tick, pulled it out by hand, found bulls eye the next day, treated short term. And due to me is getting check ups -but I donít know his doctor -very concerned!

    My sister Karen has many chronic symptoms; a couple years ago she had a tick removed from the top of her head. I am taken her next week to a LLMD!

    My mother not diagnosed but I am sure she had Lyme, she told me at age 18 her life changed. That she become chronically ill with Fatigue and many other autoimmune disease -but none where real. Died at age 50 and couldnít wait to leave Earth. Always said I am sick and tiered of being sick and tiered! (I fully understand)!

    I know many more but my mind is slipping due to this illness -we all understand this. But I do know I am shedding tears, for many and myself. What is this Lyme? I have never seen anything in my life more dangerous and what seems so easily battled.

    Why do no doctors understand the symptoms, why so many false drugs for a real sickness?

    I am really down right now; I think I need help, a reason to stay here. As first stated I am really down right now, depressed. The disease is really nailing me right now, and I feel the pain I feel, I feel how lost I am. How much I want off this Earth to be any place but this hell. Mentally and physically I am really low right now. And I am shedding tears for all I see around me, a stone throws away from being where I am.

    I have lots of tears; I can see the broken hearts, the lost children, and the greedy healthy people hiding this? So confusted!

    Sponsors Lightbulb
    Old 12-26-2004, 05:11 PM   #2
    Senior Veteran
    Join Date: Nov 2004
    Location: New England
    Posts: 1,215
    sleeperwoken HB User
    Re: I don't know what to say but I am saying it with tears

    Hi Ekim, you are having a low moment and I'm glad you shared it with us, you don't have to feel alone with this stuff. Sometimes right after the holidays we can really crash, so just take it for what it is and don't deny yourself a few tears. But then you have to pick yourself up, brush yourself off and think positively. You can do it. Think about good things and things you are thankful for. Think about the people who make you smile or those who help you, or those who love you no matter what. For me, I think about God because I know that no matter what happens He's in it with me. He knows exactly how I feel all the time and He feels it too.

    Don't let the lyme have your happiness, you are in control of that so just say, "no way, parasite, I choose to be positive right now and you can't take that away from me!"

    Hang in there, don't give up.

    Old 12-26-2004, 05:27 PM   #3
    Senior Veteran
    Join Date: Aug 2004
    Posts: 1,456
    ncgirl88 HB User
    Re: I don't know what to say but I am saying it with tears

    Hi Ekim - I hear you! I have been thinking about this a lot today...why this insidious disease is so horrible, so misunderstood, and how it is spreading so fast and yet very few people want to acknowledge it. I think until you have experienced it it would be impossible to really understand the implications of it. It is the disease but it is also all the uncertainties I think that make it so tough to cope with.

    The only thing I came up with today is the fact that it is so all over the board as far as symptoms and degrees of severity in each person. We have been taught that it easily curable...why is this? I think it is because it is hard to deal with this disease chronically and have the energy to get out there and fight the ignorance and try to push for change.

    I don't understand either Ekim...why? It has been the question I have been asking for weeks. I am having a bad day too. I haven't felt good and now I have to start Flagyl for the week and I am dreading it. My taste is completely off and I am seeing little purple dots occassionally. I am just sick of it. Sorry I am not helping to lift you up, am I? I guess I just wanted to let you know I understand. I completely understand.

    You know I think the hardest part of this disease aside from the horrible symptoms that permeate every part of your body is the fact that you have to educate the world all the time.

    As well, I was thinking today that the fact that the majority of those that contract lyme do not die directly from it seems to have many believe that it is not that severe. They do not understand the implications...

    I am sorry Ekim that you are having a tough time. Just know that we are all here for you. That it is natural to feel down at times...this is not an easy time of is filled with expectations and if this disease has taught me one thing it is not to have expectations...I am having a tough time too. This to shall pass they say. Hang in there and lets hope tomorrow is a better day...

    Old 12-26-2004, 05:37 PM   #4
    Senior Veteran
    Join Date: Nov 2004
    Location: Phil. PA
    Posts: 615
    dealer1111 HB User
    Re: I don't know what to say but I am saying it with tears

    Thank you all, do love you in many ways. We have a tie that no one can understand.

    I was working out to fight this getting my body temp up, but my hips have given out, can't even walk at times.

    Don't care about that it is my mind that is really feels damaged or being damaged. I am losing me.

    I have no worked for two years now, I have not written a new book in a year.
    I don't know how to adjust but get mad and try to help others. My only dream in life was to work with animals, I thought people had plenty of help?

    Old 12-26-2004, 06:41 PM   #5
    Join Date: Mar 2004
    Location: South Carolina
    Posts: 313
    dancergirl587 HB User
    Re: I don't know what to say but I am saying it with tears

    I'v been really depressed as well so I just wanted to say a quick message and let you knw that it will get better, I;m glad you felt comfortable to share your feelings with us here at the healthboards. You are here on earth for a reason, you are stuck going through something really crapp but I think that we can help make it easier for the next generation of ppl with LD. God bless you, you're in my prayers!

    Old 12-27-2004, 07:45 AM   #6
    Senior Veteran
    Join Date: Nov 2004
    Location: Los Angeles, CA
    Posts: 1,221
    cjFTWORTH HB User
    Re: I don't know what to say but I am saying it with tears

    I hope today is a better day for you ekim. I just read your post, and just felt so somber, sad. I've seen your name many times but wanted to get a better 'handle' on who you are so I reviewed some of your posts...

    Oh yeah, ekim...

    You're the one that laughed with me on my rabbit trail, has a wife from bulgaria, and encourages others OFTEN with your insight and personal experience.

    I do know what it is like to get really low. I know that kind words won't swoop you out of it, but it is good to know that people care.
    I am taking the liberty to remind you of your own words of hope. Please forgive me if I am being too much the fixer. I just hate to see you so low and not be able to offer anything tangible.

    Here is a recent post of yours that might be good to glance at...
    Knowing that symptoms come and go, I realize that you may have lost ground in some of the areas that were on your 'SYMPTOM FREE' list, but hopefully, it is still an encouragement for you to read over again.

    My prayer is that you find more hope than dispair today. And that you continue to reach out. And that your mind comes to order in a way that astounds even your doctors and your hips are once again strong and free in motion. cj[/COLOR]

    I am free of many symptoms here are some that are gone:

    Heart Pulps, Gone!
    Muscle Twitches, Gone!
    Headahes, Gone!
    Light Senitivity, Gone!
    Extremely sensitive skin, Gone!
    Red rashes from my knees down, Gone!
    Shaken fits, Gone!
    Blurred Vission, double Vission, Gone!
    Gerd, heartburn, All Gone!
    IBS symptoms, Gone!
    Yeast infection of gut and intestines, Gone!
    Bellspalsy, Gone!
    Unsteady on my feet, rocky feelings, Gone!
    Most of my really bad Arthritus is, Gone!
    Loss of taste and the feelings of hot and cold, Gone

    Things that are less or going away (I hope):
    Face Numbness, Mild
    Foggy feelings, Mild
    Fatigue, Less but still a major thing in my life.

    I understand that when I stop the antibiotics I become sick very fast, this is why my hunt for other treaments is so hard. I know I can't live on them forever, but also I can feel it is not curing me.

    The reason for this post is so people can see symptoms do clear up, I needed to see this at times, just to have a little hope.

    Old 12-27-2004, 07:58 AM   #7
    Senior Veteran
    Join Date: Nov 2004
    Location: Phil. PA
    Posts: 615
    dealer1111 HB User
    Re: I don't know what to say but I am saying it with tears

    Yes I understand, today is much better.

    I went through weeks of not being able to function mentally. Found myself many times with a toothbrush in my hands and not able to figure how to use it...

    I hope it is herxing, but with this think who knows. I am mostly down due to how many people I know with Lyme and how little is being done. I feel like I am helpless...

    Old 12-27-2004, 08:34 AM   #8
    Join Date: Mar 2004
    Location: South Carolina
    Posts: 313
    dancergirl587 HB User
    Re: I don't know what to say but I am saying it with tears

    As long as we have our voices we aren't helpless. We can continue to speak out against all the misinformation out there. Even telling one illiterate docter off is doing something about it! Getting proper info out there to the docters, to people who have LD and don't even know it.Keep on raising your voice, if enough of us do they have to hear us eventually. Hopefull sooner rather then later! lol! God bless!

    Old 12-27-2004, 09:02 AM   #9
    Senior Member
    Join Date: Nov 2004
    Posts: 124
    Ozarka HB User
    Re: I don't know what to say but I am saying it with tears

    I just read your first post and the follow up. I fee greatly for you and with you and pray you continue to improve.
    I'm glad you are feeling better today. This disease is so insidious. I just found out this holiday weekend that a very good friend had a tick bite several years ago, took tetracyline for two weeks.... I wonder if he will become another victim of lyme. It's sad, tragic, despairing and so echoic of what so many of you are discovering in your own experiences with lyme.

    Old 12-27-2004, 10:19 AM   #10
    Join Date: Dec 2004
    Posts: 72
    samaya35 HB User
    Re: I don't know what to say but I am saying it with tears

    Hello Ekim & others who suffer & have made posting,

    First, Thank goodness for healthboards so that we have a forum to share information.

    Second, Can you imagine if the dedicated Dr's had not discovered Lyme & co-infections?

    That being said to my dismay I have found the entire medical & insurance business is broken.

    Fortuneatly, I found a Lyme specialist but had to wait 3 months before I could get an appointment. But between the doctor's billing office I am having to pay $8000.00 a month for an estimated 9 months of treatment. And there are serious side effects to the IV Therapy the worst of which is attacking my liver and yeast infections. And this is treatment from a great Dr.
    I am currently (started 12/26) examining Chinese Herbs as an alternative. I am intrigued by the oriental vs western medical differences. My Dr in my oprinion see's the pathology of the disease and tries to use antibiotics to kill it. But even he admits there is not a sure cure.
    Now, the Eastern Medicine that I am examining does use non toxic herbs to kill the Lyme & co-infections, but just asa important also tries to build the immune system so the bodies natural defence mechanisms will futher eradicate the disease from your body.
    Sound great but is it just another "Quack Medicine" exploiting our obvious pain. I plan to contact a Chinese Dr and talk about switching to his herbal protocol. the cost is also substantally less than traditional medicine. The insurance co will probably not pay. But heck in my case the costs for this bout of IV will be 9 mo. X $8000.00.
    Stay tuned as my research continues I will post it on Healthboards. Hope that this gives you some hope!

    Old 12-27-2004, 10:57 AM   #11
    ohio hunter
    Join Date: Aug 2004
    Location: west central ohio
    Posts: 450
    ohio hunter HB User
    Re: I don't know what to say but I am saying it with tears

    hi ekim
    so glad you are feeling a little better. i went thr a real bad funk last week wishing to leave this all behind but i reemerged from the waves of dispair. you should funnel your emotions into a kick *** story and wright a book! this helped me when i wrote a story for a hunting magazine last year titled
    "don't lay down and die". i still get emails from new people wright up to 12-23 last week. i have used this to give something back to those who needed this to make the connection of their "condition" they were labeled with to lyme. i am guessing somewhere around 75 people from over 20 states. it gives me a sence of purpose when somebody says they saved it and read it when they get dispaired to encourage then in there fight. it does the same for me when i look at the framed copy on our bedroom wall. i hope you can keep a positive aditude and find something good to bring out of your pain.
    good luck and God bless you.

    Old 12-27-2004, 02:16 PM   #12
    Senior Veteran
    Join Date: Jan 2002
    Posts: 5,787
    ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
    Re: I don't know what to say but I am saying it with tears

    ekim1111, you absolutely must never, ever give up. Believe me, you have many reasons to be here. You probably cannot see this yourself, but you are helping so many people by sharing your experience. More than you will ever know.

    You will conquer this. Make a promise to yourself every day that you will get through this and that the intensity will let up. No matter how bad it is, it will let up. Each day you are one step closer to being well.

    Even with all you are dealing with, you are helping others. This is a gift. Never forget that you are not alone in your battle and that we all care.

    Old 12-27-2004, 09:22 PM   #13
    Senior Member
    Join Date: Sep 2004
    Posts: 160
    braazil HB User
    Re: I don't know what to say but I am saying it with tears

    I feel so bad but I completely understand! I don't do depression well ............I never got depressed before the Lyme and I experienced it on Christmas day- I have so many things to be grateful for yet I coudn't shake this feeling of despair............Thank you for sharing all of your experiences! I will pray for all of us !

    Old 12-28-2004, 10:22 AM   #14
    Join Date: Jan 2004
    Location: Charlotte Hall, MD
    Posts: 341
    Komondor HB User
    Re: I don't know what to say but I am saying it with tears

    It is the same story here in Maryland and it breaks my heart. There are so many of us not to mention our pets.

    In my husbands family his grandfather, neice, sister and him.

    My family my mom, her dog, me, my 3 dogs and my horse.

    My neighbor, then there is the neighbor who was bit by the brown recluse which I highly doubt since she never felt a bite.

    My sister in laws friend. Other sister in laws friend. Two people in the corner market. One lady at the local mom and pop gas station. Lady's husband at the country store.

    Two family members of employee's at Davidsons Beauty supplies along with the dog.

    A friends dog and a friend of the wife. Two people at the company we rent space from at work.

    There are so many more that I can't count right now but everywhere I go and mention lyme... someone knows someone and sometime more than one.

    I keep the local stores stocked up on "Lyme Disease - The Basics" booklets. These booklets are available online and I order 100 each order and they go quick. Full of great info.

    Old 12-28-2004, 10:54 AM   #15
    Senior Veteran
    Join Date: Aug 2004
    Posts: 1,456
    ncgirl88 HB User
    Re: I don't know what to say but I am saying it with tears

    Ordered mine today - actually slightly different ones - I will tuck them in my purse since I ran into someone over the holidays who has been sick with in a week of when I got so sick this past May - I have a strong suspicion this is what she is dealing with. She had a tick bite and the mouth was embedded.

    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Don't know what to do desmaggie Depression 17 06-18-2007 12:22 PM
    I just... just...I don't know. EoR Depression 385 10-25-2005 08:43 PM
    Very upset, don't know what to do. themightyzim Relationship Health 11 08-28-2005 05:02 PM
    I need help... I don't know what to do anymore! prettyflower Mental Health 5 04-05-2005 06:43 AM
    I can't do this. I don't have the strength. ~Tyger~ Relationship Health 92 03-25-2005 10:00 PM

    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off

    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 06:56 AM.

    © 2019 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!