Hi Guys! I am sorry to dump on you! I just don't know how much more I can take of this. My whole life has been taken away from me! I have been ill for almost two years. I am so tried all of the time I can hardly stay awake for 2 hours. My body hurts, twitches, and jerks. I have muscle pain, joint pain, and spine pain. I cry all of the time as I am now. I am not crying for me, I am crying for my children who don't understand and my husband who has suffered with me through this ordeal. I don't know how much longer he can take this and I don't blame him. My children always ask mom why can't you go to the movies or do anything anymore?
I am the bread winner in the family and may have to apply for disability immediately. I am so afraid that they will turn me down because I have not had a positive only an equivelent Western Blot. If they turn me down I will lose my house, my cars, and everything else I own. I don't really care about the material things but I don't want to have to move my children to a place where they will be afraid to go to school. If I do get disability it won't be enough for ends meet but we will make due.
I am so scared!!! This is awful!! Why aren't we being helped more!!!!
I really need a support group or a friend with Lyme. Does anyone know of a group in Maryland or is anyone located in MD,VA, or VA who needs a Lyme friend?
I really feel like I need the IV medication but I can't find a doc who will put me on it without a positive test. Does anyone know of a doc who will? I am willing to travel if they take my insurance.
We all have been in your shoes at one point or another and may feel the same way you do from time to time. This is such a hard disease to fight and the bacteria seems to make up the rules as you go along. Did you see the post yesterday frm kmay in the thread has anyone ever been cured? She/he seems to be real pleased with the doctor she/he is going to and maybe it isn't too far from you. I think sometimes we just keep taking the meds with the hope this will go away even if we seem to be treading water. Her doctor took the homeopathic approach and she says she feels great. She still has other issues to clear up but feels so much better. I don't know if the doctor is a traditional doctor or homeopathic but it might be worth your while to check him out. At least you will feel you are being pro-active. If you can't find the thread let me know and I will send it to you. Hang in there and keep us posted and come to us for encouragement. We are always glad to be anybody's crutch.
Don't feel bad for venting...this is the perfect place to do so and I really feel that this board is a gift from God. You'll find encouragement from others who have had the same fears and questions and that can make so much difference as you go to battle against this disease. Keep checking back to the posts and keep the faith. There is help for you!
You take the words right out of my mouth! There are days i just sit and mourn me for my kids and husband. They understand as much as they can but, lets face it, its not fun living with someone who is chronically ill. I have often said to myself that i need to rethink/ adjust my self to living like a disabled person. Thats a hard pill to swallow.
As far as docs. willing to treat with IV- there are a few in NY that will. Not sure about the insurance issue. BUT, i have to say that i have spoken with 3 TOP docs who have said that they are not great believers in IV. They have all said that a lot of people have been disappointed with the results.
I am going to a naturopath on Thursday to hear another approach. I will report back then. In the meantime, breathe deeply. It will get better..
Hi! I don't remember if you're on meds or not...Finding a Lyme Literate Doc (LLMD) won't necessarily get you on an i.v. treatment...I go to an excellent one (after being on i.v. Rocephin 5 years ago while going to a neurologist who refered me for a month of the treatment - and I relapsed almost immediately within a week of the treatment ending) and my LLMD (who is president of the International Lyme Group, is not all that keen on the i.v. - he's prescribed only orals for me in the past 4 years since I've seen him..
Just saying, don't pin your hopes on only one source of treatment...i.v. may not be the right one for you right now....my LLMD treats by symptoms rather than tests and it's worked well for me. Now I'm working on building up my immune system so my body can fight invaders of many kinds on its own eventually without abx...
Know that you've got lots of support here until you get into a support group and make use of the Board here anytime you want to let off steam or ask questions. We've all been at rock bottom for a long time so we DO understand and may be able to offer helpful hints and answers too....
Last edited by outinthe_woods; 06-06-2005 at 10:07 AM.
Hi Musclesnjoints. We understand how you feel. It is very scary and frustrating to be so sick.
Were you ever able to contact Dr. Singleton's office? A knowledgeable doctor will not rely solely on test results but will consider your entire history.
Getting disability can take some time so you may want to look into starting the process. It seems that many, if not most, people get denied twice almost automatically. I recommend that you contact an attorney from the beginning. They get paid only if you win and there is a limit on what they can collect.
Never give up, you will get better. You can always come here because we know how you feel. Please keep posting so we know you are okay, alright?
I was feeling just as you are right now when by some miracle I was recommended to a Dr in Centerville, VA....Dr John Pinto was the first doctor to discover that I had LD. I had been treated incorrectly about 10 years ago and it went dormant until about 2 yrs ago. I was at the point of desperation...the beautiful thing is all the remedies he has given me are homoepathic...he cautions against antibiotics saying they only drive it deeper into your body. I have been seeing him almost 3 months and I just got a negative lyme test back. I am feeling better all the time, though still dealing with the effects of the damage the LD has caused. Insurance does not cover most of the treatment but you cannot put a price on your health or getting your life back.
Muslesnjoints, I am so sorry for what is happening to you, I know you feel like it's all falling in on you at once. How old are your kids? I want to tell you something that God taught me about this illness and the problems it creates (your thread is titled Dear God Please Help Me, so I hope you don't mind my talking about God for a minute) anyway...
When you go through a hardship, your kids learn things that other kids will never know. They find out about how to struggle and overcome, how to be part of a family unit that supports each other, how to endure difficulty without losing what's really important in life such as your character and commitment to each other. This trial does not make you less of a mom, it's just a chance to show you are a true mom because now you have the opportunity to teach your family about life and all it dishes out, you get to show them how to deal with it and come out strong. They will use all of this in the future when something difficult happens to them and they'll thank you and God for showing them that it happens but it will be okay.
Kids who have perfect lives and whose parents make everything right for them are going to have a nervous breakdown when something bad happens. Don't let this stuff get you down, just take it for what it is and embrace the moments that are good. Let your family help you and let them love you through it. You don't have to be perfect and things don't have to be all on you. If you hurt and you cry and you're weak, then you're being real with them. It's not wrong to be real, let it unify your family and you will come through like war buddies. You know how people who have been in the foxhole together are really tight with each other? That's how it will be with all of you and that's a gift.
It took me a year to understand how much better my life is since I got sick. My husband is more compassionate, my kids do more around the house, and I have discovered who my true friends are in this life. I have less of them than I thought, but I cherish them like gold because their true colors are showing in the midst of trial and they are angels.
I'll be praying for your money situation. Don't be fearful. You can do this.
Well said, Sleeper! It's so true that a family learns a great deal about many things with someone going through this awful disease. It's a hard way to learn lessons, but hopefully if a family can stay together through it, they will become more solidly experienced in all the traits you mentioned! Good for you!
When i read your thread, i thought, did i write this and forget that i did? It echos my life. I can TOTALLY relate to how much guilt you feel for your kids and husband. My life has also been ripped away from me - 2 1/2 years now. Been on IV Rochephin, then Plaquinil & Biaxin orals. Nothing has helped. I feel worse now than i ever did. I'm beginnning to wonder if i'll ever get better - as a matter of fact, i'm pretty sure the odds are against it.
There is Steven Bock in Rhinebeck NY - i'm sure he'd put you on IV. Believe me, i'm not trying to be mean, but i suggest you don't get your hopes up for IV getting you better. Maybe you'll get lucky and it will work for you. It's just that i've read plenty about poeple who haven't responded. I've switched from Dr. Bock, but he put me on IV before i actually got positive test results.
Good luck, If misery loves company, hopefully this'll help!
Musclesnjoints...I too, like so many others are in the same boat with you. I guess there is one thing I would like to add about applying for disability. As my first application is still pending one of the local agencies here in WI informed me that after I was denied the first time I should contact WI Legal Action....their services are free to those in WI. Perhaps there is a free legal service in your area? I hope that you will be able to start the process soon and find resources to help you become approved as well....I'll keep my fingers crossed for you as well as for me too! I know how difficult it is to look and see all the bills coming in and the money going out dwindling quicker than you can imagine. Hang in there ok?
"Be joyful in hope, patient in affliction, and faithful in prayer." - Romans 12:12
Thank you all for your uplifting replies. You all are such angels!! I wish we all lived in the same area to support each other. I know I am probably not viewed as a person of strenght at this time but if anyone just needs someone to talk to I am here too!
i just read you post for the first time... i am so sorry for the place you are at. to be physically, mentally, emotionally, financially, drained has got to seem like TOO MUCH. but it can't be. you must fight and obviously are. thanks for reaching out. and thanks for offering yourself to the rest of us. you are in my prayers.
you know, i just read your post for the first time, AFTER writing to the montel show. i wish you'd consider just copying/pasting your post to us and sending it to the montel show. tell them that it is an original post to a support board and that it is just one person's reality of what living with this disease is like.
your poist is quite poignant and heart wrenching. i wish it wasn't your life. but maybe it can be used for good... no pressure, just a suggestion to consider. praying for you to have hope, health, financial blessing and SUPPORT in flesh. cj
I new at this too. I feel for you and can understand having so much wrong too in CA, forget it you will end up almost dead I use to be a nurse till I came here to detox my mother and ended up caused by stress, I now have no energy for 4yrs and on top lung cancer tho if its 2nd hand smoke or who knows at this point. I also have from my last scan in 02 Dr retried and here its getting bad, you kill someone and how I would love to slap the board across the face for letting the rev the lic slap there hands and off they go 20mins down the road to do more damage. I have tried now having cancer n my stomach this last Dr I have gone to so many and without any help we are in a very wealthy area no pubic transportation. Oh its a blast when sorry the male here I will never call him father he wants me out and lets just say because there both addicted to pills and for 53yrs before my time, my mother use to stick up for me all because she got preg by a really rich male and he wants nothing to do with me and its ok all these people my own mother hated the male here and I can understand because when you have to be couch ridden for 3yrs and no oxygen thanks to the dr then no A/C with the room close to 110 you have a little fan but 2 story and no air up north in the Bay Area the only good hospital we have is getting as bad they don't check the Drs they give for referral one wanted me 4yrs ago to take a psycho drug sorry not for lung cancer and oh lets see a appendix, gall ballder and why list any more it goes on pls make sure to check out any Dr you go to this one was trained by one of the best schools around tho he just sits and waits till my god your almost dead and collects your insurance money, well he is the best i have for now as i tell him all the tests and scans and MRI, CTs plus he loves to just hand out pain pills and muscle relaxer ICK, for the edema have to say I have only person his name is Jesus or God what ever tho now after 4yrs of sitting all day and nite try to lay down and sorry you have no air so up you sit and day in day out listen to music on the computer and Im always so weak and saw the post and felt so bad for u Yes I understand your pain so well. Then to climb the stairs oh my God I sit and cry and cry its the edema and the lungs but along with that now and I got so upset as how dare DR and have been to worse you know when you have or telling the dr what you want or need, this is so frustrating and then not once has anyone ever talked to me about anything wrong with me.Im fed up and so told him want a full CT, MRI on my head and lets see after he looked at my leggs he knew then, oh no she might die so finally water pills at least Im at peace..Im wiped and like you so sick and tired but don't mean to complain as hate that yet don't know how to be sick. Im not sure where the tiredness comes from and its worse in the heat to me I can't take my life because I believe in a God, but I pray that the tests that I ordered or ok he did lolrof(wish I could roll on floor I hear mom daily moan, compain but whats sick is if she would get up out of bed before 12:00p because you see she takes those pills that you had mentioned in another post and just wanted to say pls don't take them you would be better off without them I know we all in the days before the drug companys now in the billions off our sales we just handled depression, did exersise, did herb teas back then and on and on but there is other ways. Im so glad to finally get an inhalor(sp) but its not for me its for 1/2 ashma (sp)and `1/2 emphesama(sp) sorry my spelling is a mess so weak and tired that its so nice to be able to breath just whispering the keys as I type and sick that here in CA we have no Drs worth a ? well sorry Im just fed up and know that when were all sick we tend to get selfish I try so hard not to but since never in my life ever being sick then came here to help me mom and then she now never checks on me and as for him he is on me day and nite so oh well i put on my head phones and pray that I have done a good job here on earth showing love to all my enemys if there were any and left many with a feeing of love.Its hard to have no one and sit all day so weak and want to just drop dead and daily when the sun comes up I sit and thank God above for alot, tho its so hard at times and wonder why my mother used me to gain another man and all he did was used her oh she thought her charm would win him over sorry life has a way of teaching us alot and now both of them as they don't know i know but they are aware maybe i know that he isn't my real father and the part that hurts the most is my mother was always there for me but that was my mother on the drug i got her off and now he has her on another one and all my life she would hate him tell all my friends what a creep, cheat and now its sick and you just stay out of site that way you won't get sick how a mother could turn against her daugher and I asked her why not give me up for adoption yet to her doing that makes her look bad and we can't do that oh no, its ok i just sit and talk to my self its funny when you have sat in a room as long as i have even my own cousin could only take a week of it and off he went before he left asked me how do you do it and being this sick with times no way to get food, or anything.I just tell him its not me its the Dad above that helps me through this all. Im sorrry I went on so long but its been really hot here and finally I must look close to death I got all that I have begged this DR for 4yrs now and finally he gives me a water pill and then a inhalor and then gee all the scans i ordered plus a blood panel that shows all the diseases in our bodies, guess when he finds out if it works out im heading to ? Dr, sure will keep him around here they never asks for names but Im being sent to another dr a gastointestinal and would say oh gee about time Dr well can't say his name but he looks like this icon oh well I saw your post and felt so bad I do feel for ya,to even get anyone to help me take out my trash forget it. tho thanks its only cracker boxes well all i eat now for 3yrs is unsalted crackers its all i can keep down and then lime water which is great have to say that for it made with a qt of bottled water and the green plastic lime botttles in the store makes sure not anything else its pure lime and you add to water and make it like its a drink its so great for you it keeps you balanced on the ph scale so Im always a 7.0 and was so high in acid its the highest form of alcaline(sp) ooops oh well but before you get up in am you take a drink from the bottle and then all day drink a sip here and a sip there of course you can drink whatever else if you at all have heartburn, feeling like vomiting or any stomach probs this makes you feels so refreshed got it from a dear Dr friend he is into herbal things all natural he helped me with this one and its now been 5yrs sure i drink reg water but it just feels better no I don't have bad teeth I brush them but since its not a citrus so to speak because its the highest form of alcaline and I know I prob already said that its from the edema and since its really hot in this room and even with window open no air comes in you learn to adjust to just about anything in life what else can i do, but wait.My compassion level is so high that at times on these posts, you want to rush to that person and give them a big hug I do understand and more then you could ever know and want to thank you and who ever read this long post that Im sorry and forgive me ok.I have no TV, or stereo my only form of entertainment is the puter its music at least I have a couch to sit on all nite and if life wants me to sleep then it lets me get at times some times it could be 10mins or even an hr oh then you fight from sitting up the wrong way the edema and oh my god sorry but you are more happy to never sleep and sure all this time all these Drs could of done something and I even have a hookup in Canada from my storage lady her dad just died of cancer and her mother had it all her life so she understands so much but Im so weak I could never get on a plane for anything i stopped driving as don't' want to kill someone ask God why can't I leave this place somehow, no answer and no not depressed but would be so happy if I could just get out of here seeing so many selfish people even in the churches tho don't go but funny arent' we suppose to help each other I did help others all my life and now just a ride to get my mail or even food and sorry can't do so I sit and think well life is going to get much worse and I pray Im out of here by then.tho Im not a prayer warrior I only show love to all if you have a prayer pls mail me if they let you and I will pray for you.Thats one area for everyone else I see prayer works and wonder why not me God then I just sit bac say well thanks for all you do give me it could be worse I could be out in the street which if this dr doesn't do something soon i will be from this creep he has already let me know and to me how heartless..I still pray that somehow he will get love in his heart..tho dont' like the things he does all under drugs as well now as my own mother turning to him and from me. yap thats the only thing that hurt, yet you move on and think oh well in a yr who is really going to care..im done thanks for giving me life by letting me whisper the words out loud it helped my airways some. watch for whoever reads this that what you give you will get it bac so much thanks for your time and look for something good to happen it will.I'll keep you and whoever reads this in my prayers..
TAke good care everyone
PS: I just reread the post sorry What a mess its my edema Im not using it as an excuse Im educated but who cares whats more important is your heart and mine is big enough for whoever needs me to listen
I am very sorry you are dealing with so much. Please find another doctor. It is a doctor's job to help you. If he/she cannot or will not, go to a different one. I know it is frustrating and exhausting but you are worth it.
It sounds like your mother is not helpful to you. Maybe you should distance yourself from all of this stress at this time. It is not good for you.
Is there a cancer support group in your area? I am sure they would have many resources for you. Some cancer organizations have volunteers who help patients with things they need to do.
Do you think you may have Lyme? If so, tell me which part of California you are in and I will recommend a doctor you can see.
You are a very compassionate person. I am glad you have reached out to us here. Keep us posted on how you are doing.