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Old 06-06-2005, 07:25 AM   #1
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Musclesnjoints HB User
Dear God Please Help Me!

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.

Thanks for your support! Much love to you all!

 
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Old 06-06-2005, 08:45 AM   #2
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Betterdaysforme HB User
Re: Dear God Please Help Me!

Dear musclesnjoints,

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.
betterdaysforme

 
Old 06-06-2005, 08:50 AM   #3
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TeeDee HB User
Re: Dear God Please Help Me!

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!

TeeDee

 
Old 06-06-2005, 09:25 AM   #4
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nothingtofear HB User
Re: Dear God Please Help Me!

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..

 
Old 06-06-2005, 09:56 AM   #5
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Location: connecticut
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outinthe_woods HB User
Re: Dear God Please Help Me!

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....

Gerri

Last edited by outinthe_woods; 06-06-2005 at 10:07 AM.

 
Old 06-06-2005, 10:26 AM   #6
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nothingtofear HB User
Re: Dear God Please Help Me!

gerri,
what r u doing to help with your immune system?

 
Old 06-06-2005, 12:35 PM   #7
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Musclesnjoints HB User
Re: Dear God Please Help Me!

Thanks Better days For Me. I will check out KMay's Post. Thanks for your reply!

 
Old 06-06-2005, 12:36 PM   #8
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Musclesnjoints HB User
Re: Dear God Please Help Me!

Thanks TeeDee!!!

 
Old 06-06-2005, 07:33 PM   #9
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ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Dear God Please Help Me!

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?

 
Old 06-07-2005, 09:16 PM   #10
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kmay HB User
Re: Dear God Please Help Me!

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.

 
Old 06-10-2005, 11:04 AM   #11
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greenmyst HB User
Wink Re: Dear God Please Help Me!

Hello,

Are you there? I know soem good websites for you, and people you can talk to who will help you. Hang in there and be strong. Once you get treatment you will be doing alot better. Stay strong okay.

try these sites



http://www.wildcondor.com/lymelinks.html
has links to many other important sites


http://www.lymepa.org/html/the_basics_-_description.html

Last edited by greenmyst; 06-10-2005 at 11:08 AM.

 
Old 06-11-2005, 05:32 AM   #12
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sleeperwoken HB User
Re: Dear God Please Help Me!

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.

 
Old 06-11-2005, 11:14 AM   #13
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asherms1 HB User
Re: Dear God Please Help Me!

Our family is holding you up in prayer. There are Lyme support groups in Maryland.... I am in one. You can find them using search engines.

Regarding doctors: I recommend Dr. Kenneth Singleton (see great doctors thread).

 
Old 06-11-2005, 03:32 PM   #14
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outinthe_woods HB User
Re: Dear God Please Help Me!

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!

 
Old 06-12-2005, 12:22 PM   #15
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bbird HB User
Re: Dear God Please Help Me!

Musclesnjoints,
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!
sTb

 
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