posted
This post is kind related to my other one about acceptance..which I didn't get responses to
But...in a nutshell, I know people say I will get better with treatment and every problem has a solution, however i am faced with one that does not
I am in no way discounting how hard others have it on here btw just stating facts about myself.
As I mentioned in other posts, I am so cognitively impaired I cannot even read or understand alot of info, am in a wheelchair and cannot drive or get myself places and have family who basically have said that they do not have the money, resources, or means to get me better and i cannot do it on my own.
All the lists people sent me are great but I cannot even understand written or verbal info most times (or enough to get myself help)...
My husband is unable to help me due to his job schedule, my parents do not believe in chronic lyme, my in laws do not believe I have chronic lyme, we are broke and just trying to keep a roof over our heads and do not have the financial means to go to a dr that is not close by and accepts insurance, which i am told by most of the lyme contacts I have spoken to, inclduing the LDA rep for my state that the only dr is 5 hrs away and i need to find someone to work with him locally.
Anyway...my family loves me but they just don't have the means to financially help anymore, don't understand the severity no matter how much I try to explain and my husband basically has said he cannot get me to drs outside of my vicinity because he cannot take off any work time and i am way too cognitively impaired to do it all myself and cannot drive and we don't money for cabs. He will not even allow me to have a personal assistant to have some companionship and help during the day because he says we cannot afford it.
The other possible option of seeing DR H in NY when I come up on his lonhg waiting list is moot because i cannot get anyone to get me there..am not physically stable enough to be on the plane and either way..cannot get there myself and cannot afford plane rides each month or the money to havea phone consult which he requires of allpatients not working locally
So..,my point is...we have exhausted all options, I am too ill to case manage myself and even take advantage of these lists...I have done the best I can but I cannot even remember my friends at times or even the simplest things about my husband.
My mother in law has spoken about possibly having to put me in a nursing home if they or my husband is unable to care for me.
So...not trying to be negative, nor am I looking for sympathy..I( am being realistic...I won't get better because I am unable to get any treatment
So..I have to accept reality of my future (or lack there of) and just use this forum to try to do all i can free to help myself and to learn how to cope and come to terms with this.
My family is kinda writing me off inadvertently and says i need to come to acceptance and that lyme disease does notkill, nor do herxes,
and that i have been too fixated on getting treatment for lyme and if anything, I should start all over again and see local drs who can try to figure out what IS wrong with me.
Thanks for all your support the short time I have joined here...I still plan to stay on and try to get support when i can and reading about those getting well both makes me so happy and hopeful
but also is hard to take knowing I cannot get treatment and am declining physicaly and especially cognitvely so i know it is more in my brain than ever
so i am also angry at my family but they have a way of making it seem like I am the one who is wrong and they said they are doing all they can so I guess i have to come to peace with that.
Please don't think I am unnecessarily giving up..itis what it is and money doesn't grow on trees and i cannot clone my husband so he doesn't have to work and not be able to get me to dr appts or out of state.
I am so upset right now, sad, scared and angry and i have noone to talk to and often can't even articulate my feelings verbally unable..slurred speech, cannot find the words and so cognitively confused.
Loveand hugs to all.
-------------------- Sick for 20 yrs+,dx'd 10 yrs ago fibro/cfs & hashimotos.dx 4 yrs ago w/neurolyme,recent adrenal failure, recurrent spinal cord injury,probable ankylosing spondylitis. Unable to get treatment & severe Cognitive, psych & physical symptoms progressing. Posts: 82 | From az but moving to ft lauderdale, florida= plantation. fl | Registered: Aug 2009
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posted
I'm sorry that you are struggling so much right now. I have not read all of your posts, but if I am correct you are moving or soon will be?
Maybe in your new neighborhood you can reach out to support groups or a church or other organization to get you some in-person help to navigate your health.
Even if you feel that there is nothing to do right now, don't stop looking for new opportunities. It's a terrible burden that Lyme patients face but we are often responsible for our own treatment, as I'm sure you understand.
In the meantime, do keep us posted and "talk" with us. And who knows? Maybe soon a new direction will appear for you to take.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
It is a tough situation, and I'm sorry.
Have you read Healing Lyme? The book is very good and there are herbal options you could try. If you absolutely cannot get to an LLMD, I would look into what's available herbally.
In a nutshell, my LLMD had me on adrographis, resveratrol (Source Naturals brand), and Nutramedix Banderol and Samento.
You can add to that core protocol based on your symptoms. Perhaps you could buy the book and have someone help you sift through the details of what herbs might be good for you.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
they refuse to see under our skin. anyway.. it's a horrible situation and i believe my entire family has lyme and will not accept it and they're nuts.
thanks for the advise.
-------------------- Sick for 20 yrs+,dx'd 10 yrs ago fibro/cfs & hashimotos.dx 4 yrs ago w/neurolyme,recent adrenal failure, recurrent spinal cord injury,probable ankylosing spondylitis. Unable to get treatment & severe Cognitive, psych & physical symptoms progressing. Posts: 82 | From az but moving to ft lauderdale, florida= plantation. fl | Registered: Aug 2009
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About a month ago I had three of my sisters try an intervention. They don't believe in chronic Lyme disease. They believe I have had enough antibiotics and now I am just doing this for attention.
I had just gotten out of the hospital with severe Bradycardia for nine days. To make a long story short, I told them that was their last visit to my home. I am more relieved that anything.
Hang in there, Truesun
-------------------- Misdiagnosed for many years. Treated for many things besides the real issue. Lyme diagnosed April 2008. Parasites diagnosed recently. Past to both my sons. Trying to remain hopeful and thankful. Posts: 144 | From Ohio Valley | Registered: Mar 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
So sorry that life is so hard for you right now. But I agree with Truesun.
If parents and in-laws are not supportive, do not be around them. Tell them you don't want to be around anyone that is not supportive. In no way will it help you.
And if you husband loves you, he can take time off work to take you to a doctor. My husband takes off every few months to take me to my appointments. Most docs will schedule appointments out several months for patients that have to travel.
Usually the initial appointment is most expensive, after that not as much. My doc files my insurance and I get reinbursed, so its not that bad.
I would pawn everything I had to get to a LLMD; and I would not allow ppl around me that treat me like your family is treating you.
I think it is very sad that ppl with LD have so much adversity to face; but we have to take charge of our own health and discard those that aren't willing to understand or support us.
I will be praying for you!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
lymebrained,
I am so sorry that you are in this predicament.
I too, wondered if there are any community services available that could help you, even in a small way.
Could you call a church and ask for a pastor/priest/rabbi etc to visit?
They should be able to give you moral and spiritual support and perhaps connect you with community services.
Tell the pastor/priest about the chronic lyme and inability to get treatment, mostly due to no transportation long distance.
In the meantime, I think sixgoofykids's suggestion of using some herbal treatment should be something you should consider.
It is sooooo frustrating that people like you are stuck without treatment.
You just wonder how does this happen in this great Country of ours??????
I am really praying for you!!!!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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my husband has taken me to several drs appts..i have so many things going on i literally have a few appts a week but beyond taking me to appts he cannot help out with obtaining services, etc and i don't belong to a church...i am jewish and we cannot afford to pay for a synagogue
I agree with cutting off support to those who are hurtful but they are the only support i have and i will be homeless on the streets without them.. i cannot live alone
thx for so much support.
-------------------- Sick for 20 yrs+,dx'd 10 yrs ago fibro/cfs & hashimotos.dx 4 yrs ago w/neurolyme,recent adrenal failure, recurrent spinal cord injury,probable ankylosing spondylitis. Unable to get treatment & severe Cognitive, psych & physical symptoms progressing. Posts: 82 | From az but moving to ft lauderdale, florida= plantation. fl | Registered: Aug 2009
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Hi I am so sorry to hear of your distress and situation.
I want to ask. are you still in Arizona? I am too and maybe I can help with some idea?
Willing to try.
Please let me know
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Do you have to belong to a synagogue before a rabbi will come and visit you and offer support?
If that is the case I did not know that...and it is very sad.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Sent you a PM...Please read,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Lymebrained.. I think sixgoofy's idea is a very good one!
I hope spring can help you in some way.
I agree with Dekrator.. that is very sad indeed! I didn't know you had to pay to belong to one.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Hi,farm stores sell tetracyclene in bags that can be mixed in water or put into capsules.
I have used cattle benzathine pennicilan G from the farm store.
There is a antibiotic at the farm store called TYLAN i am thinking about intramuscularily injecting myself with it as an expirement.No one has tried it yet as far as i can tell.
It is in the class of Zithromax and Biaxin.
I am not recommending it ,however I felt it was better than losing my life to lyme.
I am not a doctor so using this info is at your own risk.
MADDOG
Posts: 4083 | From Ohio | Registered: Oct 2000
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