nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I loaned three books to someone I met whose husband tested positive for borellia and babesia but is not getting treatment. He probably has bart to from the symptoms she describes (painful feet and rage). After three weeks I saw her again and she said she has read half of one book.
The husband is so sick he is probably close to dying. He has to be on blood thinners because he has had clots. Passes out. Can't dress himself or take care of himself. She has said she doesn't know how much longer she can take care of him. I have been very worried.
I even set up a local doctor that will treat her husband. She says her husband refuses to go. I told her his mind is affected and he cannot make rational decisions. She says she knows and then tries to close the subject saying, she is "working on it".
What upset me the most was when she told me they have a full bottle of Mepron but he won't take it because it gives him an upset stomach. I forgot to ask if he was taking it with food.
I am so angry. What if that were ME and my husband would not get me to a doctor. She has known about me for three years. One of the people that works with her knew about my treatment and told her. How can anyone just throw up their hands and sigh that they are trying. You aren't trying if you are being passive with a very sick person.
You are either doing something or you aren't. Why doesn't she tell him what she told me - a perfect stranger - that she can't take care of him much longer. Where will he go? What is the plan? How long would he hold out from getting treatment if he knew hospice was his next stop? You can't tell me it is impossible to get that man help.
In addition I want my books back. I use them for reference all the time. She has read half of one book in three weeks. Obviously it is not the demandatory reading for her that it is for me. When I got those books I poured through them day and night and still do. I told her to buy Cure Unknown which she didn't.
Sorry but I am really upset over this.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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James1979
Unregistered
posted
You obviously have a good heart and are trying to help, but my rule is this: you can't help people who don't want to be helped. If your conscience tells you that you've tried hard enough to help them, then just let them go. You are not responsible for them.
About your books... I don't know. Maybe break in one night and steal them?
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Thanks James
I should stick to trying to help people that want help but I can't believe her husband would not want it if he was mentally competent.
My mind was so messed up I felt complete despair and hopelessness. I got help in that state but I believe he is even worse off.
I will get my books back sooner or later.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Men are harder to convince to seek treatment if you ask me.
Give her a deadline on the books. Let her know that you DO need them and refer to them all the time. I would imagine she has her hands full with him and she's not likely to read all of the books anyway.
I refuse to loan books anymore. I'm rather possessive about my books and have been burned before. If it's not important enough for them to buy their own .. then it's not important.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Ditto what James said. I have tried to get SO MANY people to consider Lyme. I have even used the argument with spouses that if the patient was an addict, you would make sure s/he got into treatment. This person can no longer think for him/herself. You have to be the one to step up.
But the sick people just dig their heels in further, and the spouse feels even more overwhelmed and helpless.
You have to let this go. The emotional impact on you is TOO MUCH. Lead by example. Get yourself well.
And get your books back by being completely honest. They are necessary reference books for you.
scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Yep been there done that. My baby's friend's mom was diagnosed with MS. Very young lady. Now I figured the chance of you getting Lyme is much higher than MS so I lent her my Under the Skin DVD just to expose her to the other "possibilities". But do you think she bothered to watch it?? NOPE!! Now if it was me I wouldn't leave any stone unturned just to learn more. Finally, after weeks I just asked for my DVD back (it is my reference source!).
Two days ago at our Club house pool I ran into another mom. Her daughter plays w/ mine. She came over to tell me 4 months ago they were on a cruise and stopped at the Cayman Island and that night she found a tick embedded in her daughter's scalp. She said it was in there for only 4 hours max. She said she only now remember when she saw my Picc line! Now mind you she sees how sick I am for the last year and yet it didn't occur to her to keep the tick?
Anyway, I BEGGED her to get the kid tested... so today she said the Ped will order the Elisa test. There is no way she will pay out of pocket for the Igenex test. But what else can I do? You can lead the horse to water but you can't make it drink! So frustrating!!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I will tell her she can keep them for another week because I really do need them. I forgot I loaned a couple of books to someone else and never got them back. All of the books are expensive but one of them was very expensive and I can't afford to replace it.
I guess we are the lucky ones. What really gets me is the fact that he tested positive, she knows he needs treatment but they refuse to get it. Stuck in denial.
The GP was very kind saying he would help them. It puts him at risk because this person is so sick the abx herx could put him in the hospital. When I said I don't know how anyone could allow someone else to get to this point he said, "when people have made up their minds, facts only aggravate them".
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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When I said I don't know how anyone could allow someone else to get to this point he said, "when people have made up their minds, facts only aggravate them".
-
Boy, is that true!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
You have done what you can - I would call and say I am going to be out on Friday and would like to pick up my books. I use them for reference and research.
I am very picky about loaning out special books. If I can spring for it and they really need it, I will get them a copy.
I have two copies of under our skin. I have loaned them out, called to go pick them back up, the people never watched it.
One person, per my request, watched it on Netflix. She had not seen me in over a year and said she was moved to tears when she thought of me being so sick.
A month later she emailed me asking if I could watch her 7year old at the beach for three days........hmmmmmmmm. In between meds, IV, naps I will see if I can make that happen.....not.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
quote:Originally posted by Dogsandcats:
A month later she emailed me asking if I could watch her 7year old at the beach for three days........hmmmmmmmm. In between meds, IV, naps I will see if I can make that happen.....not. [/QB]
I get this too!! So called friends asked me to baby sit because "I am home anyway". Hmmmm... I'm home b/c I am sick! I can barely take care of my own let alone other people's kids! Unreal!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
This disease is certainly not meant for everyone. By that I mean that not everyone out there is as determined as those that I see on this board to get well.
I remember when I first got diagnosed. After reading up a bit, I was upset and crying to my mom on the phone. Then she said something to me that really made me stop and think. She said...if anyone should get this disease, it should be you.
At first I was taken back by what she said but she further clarified that she knew I would get well and that I would find out all I could about it and do what needed to be done.
I have another family member who is very sick. She is in and out of the hospital all the time. I am VERY close with this woman and after reading up on lyme, I told her I thought she had it.
She has been diagnosed with fibro and has a slew of other problems. I finally was able to convince her to see someone and when we were at the initial consultation I found out she tested positive for lyme in the past. She was never even given abx. and was told it was a false positive.
I lived with this woman for 6 years. We lived on 13 acres of land backed up to the woods...went hiking on the land in the back...both the dogs had lyme...and now, here she is only 54 years old and very sick. I honestly think she will die within the next year.
She never did go through with her follow up appts at the other place. She is in bed all day everyday. She is on home O2. She has had a couple of strokes. She keeps doing rounds of steroids only to come out feeling WORSE than prior to taking them. The only time she feels halfway decent is when she is on abx. that they give her for other infections. These abx usually include zithromax, cipro, levaquin, biaxin....etc. When she is admitted to the hospital and receives IV Rocephin she feels great!
However, I CANNOT get her to seek out treatment for lyme. I still bring it up occasionally but I think she has just given up. She has sunken into a severe depression and is on three different anti-depressant pills. She is on a ridiculous amount of pain meds. and almost died when she ran out of her ativan early. All in all...she is a HOT MESS!
My point is that not everyone is willing to or able to help themselves. They have no will power sometimes and I think it is easier to just give up than fight the fight. At least this is what has happened in my relatives case.
It's a damn shame too. This is one of the most wonderful, caring people you will ever meet. And I just have to sit here and basically watch her die. Very heartbreaking.
You have a good nefferdun. It shows. The sad reality of things though is that we cannot save the world. No matter how bad we want to.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
What a story philly. I didn't expect this. I thought people would be overjoyed to find out there is help and they can recover. I think some people are afraid to defy authority. If the CDC says it does not exist, then they can not be wrong. Doctors are regarded with such reverence, who could possibly question them?
I believe it was much easier for me to accept because I have always been misdiagnosed by doctors. I learned not to trust them. Vets too. If it is not a gapping wound, a break on an x-ray or some other very obvious trauma they cannot diagnose it any better than I can. And when I am clearly right they cannot humble themselves to admit it.
It isn't because I am smart. It is because I am desperate. I do not really matter to doctors. Neither do my animals or my children. I have been on the wrong track at times but eventually I discover the real problem. Even the LLMDs have let me down.
I diagnosed myself with lyme. I even treated myself according to Dr. B guidelines and info from this forum. I told the GP what to do. He never had any natural curiosity or motivation to learn for himself.
If that man went to see him, it would be ME telling them what to give him. That is very scary as this man needs expert help and probably IV. It is not so easy to just recommend an LLMD as the nearest experienced one is 500 miles and he won't travel five miles much less 1000 round trip. Beside that if I knew who to recommend I would be seeing that person myself. I really can't do anything. I can't be responsible. It is over my head.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
nefferdun, that is terrible. I will probably never understand why people bow to doctors as if they are some sort of gods. They're only human, they make just as many (if not more) mistakes than all the rest of us, and they DON'T KNOW EVERYTHING!
I have a family member who was just diagnosed with MS. After diagnosing myself with lyme, I have repeatedly tried to convince her that she should be tested, as well, but she seems content with her diagnosis of MS. Why? It's incurable and they "don't know" what causes it. I wouldn't lay down and take a diagnosis like that! It's a cop-out, it's not even a disease it's just a fancy way of saying "lesions on the brain" which could be caused by anything! So frustrating, and when I talk to other family members about it, the general consensus is "Oh.".
that's it?! She saw ONE neurologist who diagnosed her based on MRI and lumbar puncture and she's convinced these tests are "100%" proof of MS. They put her on daily shots that cost $5,000 per MONTH.
I just don't get it. I wasn't about to listen to my doctor when she told me I probably had rheumatoid arthritis. I had things going on that couldn't be attributed to RA (which is another bs diagnosis, anyway, if you ask me), like extreme redness of the skin over the joint - something that should be pretty clear evidence of an infection, and I knew I had a tick bite and a weird rash (which I never went to the doctor for, so she wouldn't consider it related to the "arthritis"). I don't understand why some people never seek a second opinion or why some people won't take an active role in their own health or the health of loved ones.
Posts: 156 | From Virginia | Registered: May 2011
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i loaned some very expensive vitamin books and lyme books to a coworker. when i asked about them she claimed i gave them to her. yeah, right, a 25 dollar book and i just gave it to her.
from then on i never loaned her a thing even tho sometimes she knew i money, i still would not give her a cent.
i'd simply say you are in need of them and ask for them back.
i've gotten grumpy in my old age. apparently she's not even using them. i'd tell her that someone else needs them desperately and let it go.
remember, you can lead a horse to water but you can't make it drink.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I have to accept that some people will die. It is just like alcoholism or any other disease connected to denial. In this case it is not the first drink that gave this man his disease. It was never a choice. He sought help but couldn't get it and now his mind is so gone he is incapable of making a rational decision.
This woman is not a saint for care taking him. This woman is an enabler in my opinion. She was informed by another person about chronic lyme long before she met me. She knows, yet she is weak and unresponsive to her husbands real needs. She dresses him and feeds him but she does not give him the ultimatum of going to a LLMD. She gives him power he does not really have.
I grew up with alcoholism and out of control people. It still hits me hard when I cannot reach someone. I have seen so many lives destroyed and the "do gooders" are the ones that make it all possible. I have to accept it and let go.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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