GIVING UP: WHAT WILL HAPPEN?

I believe it is the nature of this infection (Lyme) to destroy the host/infected from the inside out.  I will probably be dismissed and lectured by those who believe I am passing hopelessness along to others who actually need bolstering.  And perhaps this is true only for some.

Some of you will not relate to this, as you have had to spend thousands more dollars than I, I just don't have thousands any more to spend.

I am lucky enough to have a well respected LLMD, but I can hardly ever get into see him (currently being punished for forgetting my last appt). He is expensive, as well, as are some of the meds he has prescribed. When issues come up that I believe are related to Lyme, he requests that I go to another specialists.  He never tests my liver or spleen (I have 2 strains of babesia), so the abx could even be doing more harm that good -- what would he know?

As some of you know, I had a very severe eye infection for which I had to see an opthamologist for a little over a month, almost everyday, w/ a60 co-pay each time. (plus they have sent me anothe $200+ bill after thousands I've pd to them) My corneas and my eyesight were on the line and I had to do it. Not only the co-pays, but this Dr prescribed and changed my meds every other day. I have a cupboard full of eye drops that he had me stop using the day after I started them.

Next, my 10 yr old dog needed to see the vet -- a 'lower cost' vet. Starting w/ priorities that needed to be checked and treated, I came out owing $300 and we still need to go back for more. Can you believe that a abx script for her for 10 days cost $100!

I am not poverty stricken as many of you are. But I do not have the money to buy all my scripts. Esp since they have not done any good. When I started anti-virals, I stopped my Augmentin and LDN, which I felt were not helping at all. However. I am now sicker than before. And I have used up all emergency medical funds.

I have decided to just let this infection run its course; If Lyme kills me, well, then there's one more stat that can validate this disease.  I feel as if I have only been experimented on (esp eye Dr who changed from day to day.)

My back is shot, I will probably be crippled within the next few years. So who cares?  There is nothing that can be done about that, anyway.

So I am giving up. I have lost ALL of my friends and most of my family. I moved in w/ my daughter who I love more than life. She has a baby (now 11 mo) whose father is not in the picture except for supervised visits once a week because he is a violent drunk. I stood by her side, helping her, as she gave birth.  I took one of my dogs, who is my baby, back to her foster mom because she is so exuberant, my daughter feared the baby could get hurt. Of my 2 dogs, she was the closest to me, emotionally, but I knew that my old, black, ornery dog could not find a home because no one else would  care for her or understand her like I do.

anyway, I moved in w/ my daugther to help her w/ the baby --I bathe her, often feed her, play w/ her and watch her while my daughter runs errands, showers. I am a free babysitter when she has no one else. And she freakiing hates me. She verbally abuses and insults me, then if I argue back, sticking up for myself, she tells me to leave her alone and will not listen. My own daughter. I am not resentful of what I gave up for her, but it hurts deeply that she feels this way to me and it's downright ugly, nasty, and mean.

Sorry, off track there. I don't feel like fighting this anymore.  It is too dangerous to take these abx for year and years w/o liver and spleen checks. I am so over it, over the whole thing. I believe that this disease is eating me from the inside out. Between the pain in my back, pelvis, hips and legs from the collapsed spine, I cannot take all the pain much longer. The only thing will do is pray for a miracle.

This is not written in order to garner sympathy for poor poor +LYme. It is written because I have decided to give up, con't on and see what happens. When one dies from Lyme, what do they die of?  I will NOT live to be a burden on anyone -- crippled or w/ MS or Parkinsons, etc.  I will not take to bed and have anyone take care of me -- I have my ways of taking care of that.

Is there anyone out there who is continuing on w/ out and help ro meds?  Even natural treatments, because they are expensive too.

sorry so long -- can anyone add to this.  I admire all the fighting most of you are fighting.  but I just don't have it in me anymore

 

Have you tried lauric acid?  It is cheap and boosts the immune system while fighting of the infection.

 

Hi +Lyme,

You are such a good person, always remember that and no, you don't deserve to be treated that way by your daughter (I am guessing she has her own issues and perhaps she's taking it out on you), still does not excuse her behavior.

I remember your past posts and in my opinion it's time that you put yourself first and do what's good for you.  Stress is horrible and it's not doing you any good.  I know this sounds easier said than done but if I were in your shoes, I would quit my job, go on disability (just your back problems alone you would get it), go stay with your parents and take it easy.

What will happen by stopping the abx?  Oddly enough, I think it would do you good!  You have been on them for so many years and in my non-medical opinion, you have killed the bacteria.   What you are left with is toxins.  Please don't under estimate what toxins can do to a person...  

Can you afford $100.00 a month?  If so, I suggest buying 2 of Jernigan's products (the Borrelogen and the Neuro-Antitox Formula).   That would be around $100.00 a month.  If you want more details about the products, e-mail me...

Again, this is your time now.  You worked hard all these years and you deserve to be "good" to you!   Forget this doctor, he sounds like a jerk to me..  Be kind to yourself, give yourself credit for everything you have done..  

There is a plan for you, you just need to take the first steps...

Hang in there okay?

Denise

My heart goes out to you tonight. It must seem like too much to bear. I've been there, too. Wishing, praying, planning for an end to the despair. And I believe that's what you feel now, hopelessness and despair. But as long as you have breath, there is hope that things can get better.

I really sympathize with you having to give up a dog. It recently happened to me, too. I realized I could not handle him due to physical problems - I tried and failed. (Fortunately, he is with a family that has his sister and they are in training for therapy work a handicapped daughter.) You must be grieving over the loss - I know I am. Lyme steals so much from us.

I agree with previous posters: stop the abx and try something else. Deejavu recommends Jernigan's products and I do, too. I used those after coming off abx and they helped. Also about a support group. Some cities have lyme support. If not that, then maybe chronic pain or illness. But somewhere you can connect with others and share.

I hope you can have a heart-to-heart with your daughter. She needs to support you as you are her. Sounds like she has some deep emotional pain, but that is no excuse to be hateful.

Please know that I will pray for you.

+Lyme- I want to say that I understand at least a portion of how we feel. Fighting with chronic illness is hard. Yes- Lyme can affect your mood- but it is more than this. I don't want you to feel as if we are telling you it is just Lyme confusing you and you "shouldn't" feel this way, or wouldn't if you didn't have Lyme...I have thought of giving up before, but like achievinggrace, I realized that, for me, giving up wouldn't fix anything. for me, it wouldn't make anything easier- I would get rid of the difficulty of finding/doing treatment, but replace it with more severe problems. But I have come close to giving up. and the wonderful psychologist who sees me has told me many times that many people with Chronic illness DO give up. It is so hard to keep fighting- and many people chose to give up. They lock themselves away at home and give up on doctors, treatment and ever getting better, because they can't face the challenge of fighting and going to see doctors. Because that part is HARD. REALLY HARD. Trust me, I know.

So, while I would love to tell you to keep on fighting and to try to find a way to get treatment, I don't know if that is fair to you. I don't think you are making this choice because you want to give up, but because you can't keep fighting...

I know seeing a psychologist is very expensive, but here in Canada we do have psychologists who see people for very cheap or for free if you have low-income or fall into a special category. Have you looked into the options near you? I think the most important thing for you at this point is taking care of your mental health. Other people have mentioned psychologists too. It isn't that this is all in your head, or something is wrong with you for "giving up" or any of that- it is that living with a chronic illness is brutal, and most doctors I have seem believe that some level of depression is unavoidable after a certain point. If you are lucky, you will find a psychologist/therapist etc like mine who knows exactly how hard this is to fight, and can help you.

Other than that, I don't know what to say. I don't want to tell you NOT to give up, because I have a feeling you have literally done everything you can to this point. If you are mentally exhausted and "done", then us telling you to try harder will not help anything. but at the same time, I worry that if you give up things will just get harder. So I'm just going to ask you to try 1 more thing- try to find a psychologist or counselor. Just that. They can talk to you and help you find the solution that is best for you.

+Lyme, if you check in Please let me know you are okay. I've worried about since you posted this. You're in my prayers.

I typed a long response which kills my joints and my computer rebooted unexpectedly.

Never, Never, Never, Never, Never, Never, Never give up!  :)

Everytime I am have been at my lowest...God has been faithful to answer my prayers.  Most recently...my family has completely turned their backs on me when I am on oxygen and an electirc wheelchair.  I was at the point you are as I am single and live alone.  God delivered me a wonderful man when I least expected it.  I tried to convince him he did not want to get involved with me as sick as I am...He is an angel..a gift from God!  :)

I apologize for not getting back on here and responding to all the supporting, sympathetic and informative responses to my post.  I have had to work some nite courts and running my dog back and forth to the vet every day and still helping w/ the baby. I just haven't been able to get on here long enough to read all the responses til today.

There's no way I can respond to each kind and helpful person here, but I appreciate each and every single post.  I am considering quitting my current treatment and trying to get myself together enough to put a natural program together.  One of my worst Lyme symptoms is confusion and inability to make decisions and I do a lot of aimless wandering just to get thru the day! I hope you can relate!

ALL of you have helped me so much and I think you've also helped each other and everyone else. God bless all of you.  I truly admire those of you who are pushing yourselves so hard and so determined to kick this.

 Unfortunately I have another crummy question to ask, which I will now post, but I'm ill again and will havea to come back later. 

+Lyme

- Just wanted to say, I agree with you. When someone posts something like, "forget it, I'm giving up this dark maze of lyme self-recovery" everyone jumps up and says "you have to keep fighting" bla bla bla. I feel like this is a classic example of people attacking and blaming the wrong people. I just want to put my perspective on here for the record, for people like me, who see your post and can completely relate, and then read everyone's responses which in my opinion pretend to be humane and caring but I think are often actually defensive and act as social signals to others in the lyme crowd - these people have found hope again, they have found a tribe and they don't want to be skeptical about their views.

It's good to have optimism, and I can relate to the helpful and wonderful communities surrounding Lyme disease online. But something like Lyme, after three years, makes me feel like it needs a healthy dose of reality. Governments, the general population, and even families just dismiss Lyme from reality. It puts all the blame on the victim of the disease and it makes life completely impossible for a kind, normal human being. Oh, you aren't feeling better? Toughen up and keep trying things. It puts all the impetus to get better on the patient. But I think human beings need support. We aren't freaking scientists and doctors. We need to trust the medicine out there, and we simply cannot. There are literally thousands of conflicting ideas and treatments at this point. I would say its crossed the line into a territory that is completely impossible to treat this disease in a clear, consistent way.

There are just too many opinions, too much placebo effect, too much speculation. I've read too much, I value reason and scientific integrity too much. I can't play the "try this try this" game any more.

Time seems to have done better for me than anything. Many success stories of this supplement or that may be influenced by time going by too. The point is, there's just no scientific consensus at all, and such a huge lack of imagination. We should be trying to cure this, or developing technology to get people back to work.

I would agree with the self-treating optimism if there was clear science with treating lyme. I would agree if I had seen an encouraging up welling of support from friends and family. But the opposite is true, as many of you know - since getting sick, I just have no energy. Tried it all, I've wasted money on mainstream doctors, and wasted money on LLMDs. I've wasted money for years and years, and what's the result? We're human beings. Asking someone to spend years living in someone's basement like a freak, experimenting with drugs, getting no social support.... this is a fantasy. We're soft, sensitive, social human beings. I think its too much to ask people sometimes.

Still just tired. Today, tired. Yesterday, tired. Less tired than two years ago, and less neuro randomness. But utterly broke. And have no energy to be working 40 hours a week. Just part time jobs for me, which are still almost impossible some days. And just an absolute nightmare of social shaming and pretending.

I slowly improve. But I feel that society has created an inhumane situation for lyme sufferers. This isn't ok, this isn't something to give up on. Awareness is the key, and probably government, medical, and cultural reform.

I believe that if human culture was more aware, and more full of love, we could develop the technology to understand and cure this disease. Or at the very least, help people stay financially viable and hopeful during their ordeal. Society should be spreading the tenants of love, of scientific optimism, of understanding. Instead, the victim of Lyme takes all the heat, all the social shame and torture, and through a valiant but ultimately hopeless endeavor to be the scientist and doctor, he or she just spends all the money they have left.

I think there's a good case to be made to say, "forget it. What happens happens. I will not be my own doctor when the real ones are incompetent. I will not pretend to understand new and complicated medicine. I will not shoulder all the blame of disease. Disease is not my fault. And most importantly, I will not keep running forward with hope only to fall back down with my shoelaces tied."

I think there's something to this, and I think it helps put the blame where it belongs. But it certainly isn't on the patient.

Its playing right into society's ignorance and shaming to blame fellow lyme victims for "not trying hard enough." I think someone is in the ethical right, and even logical right, to say, forget it, I have no idea what is working and what isn't here.

Hi Future Caveman,
Welcome to our community. I'm glad you found us.

I have a unique view of all of this as I was first infected by the age of 7 years old, and lived with these infections, undiagnosed and untreated for 40 years before I found treatment that would work. I'm an abx failure though.

What I can tell you is you won't live a good life, or even a nice life without treatments. Having lived that long with these infections, I had random periods of varying lengths that I had little symptoms, but any time life got a little stressful in some way, I was very ill again. I have had my dreams dashes a thousand and one way, a million times for career, family life, being a Mom and more - simply because I had untreated infections that would flare and keep me sick.

To say that we - who are also going through the same things, or have been there and have healed - are attacking those that are ready to give up simply because we try to encourage them is just not true. By saying that, you are saying that we are the ones that are wrong to lift people up and try to give them moral support to finish treatments. I know you are in a really hard spot right now, but take it from someone that's walked through that 'valley' - that's not what's right. At that point in time, we actually need all the support we can get. Not treating is not how we heal and get a life back.

I'm so sorry you are hurting so bad, but please don't turn your anger towards those that are trying to live through the same things as you are. We are here to help in whatever ways we can. No one here is blaming anyone for not healing, believe me. We do, however try to encourage those going through this to stick with it, to stay in treatment and to give them glimmers of hope. Why? Because we have success stories from those that have healed, and we would like to see each person here heal as well.

No one knows what it will take for each person to heal. It's a very complex situation for each of us, and it always includes a LOT more than just treating an infection.

But to sit and say that you refuse to do what doctors refuse to do isn't helpful either. I lost 40 years of my life to waiting for doctors to find what was wrong with me. I was the one to figure it out. I lost another 3 years with failed treatments. I was the one to figure out how to treat and heal my body with the help of a willing, but non-Lyme literate practitioner. I had to bring her articles and help her understand the process, and I feel very blessed to have found her.

Please do not place blame those that only wish to help encourage those that are in treatment. Every single person needs encouragement at some point in their lives and for many here and elsewhere that have these infections - without that encouragement, there are many that would not make it through, since they get little or no support from other sources.

I forgot to add that there are now studies starting to happen on the herbals for treating these infections, besides the ones that were done by individual doctors:
tai.sagepub.com/content/early/2016/07/01/2049936116655502.full.pdf+html

But since the pharma industry will not make any money on these, they won't fund them. So we have to wait for individuals to choose to put up the money for funding these studies.

I encourage you to stick around our community, read the many threads here that may apply to your situation before forming an opinion about us. Who knows? You might decide that we aren't so bad after all?

This is an incredibly interesting and important conversation.

I haven't read through the whole thread but the recent posts are full of truth, reality and hope. They are not mutually exclusive.

Caveman -

While sometimes posts can read in a different way than they are intended, of course it's understandable why some people feel like they are being blamed. But none of us here would ever blame someone for feeling hopeless or beaten down.

Two main purposes of this forum are to provide information and compassion. Lyme causes more death by suicide than by lack of cure. Since nearly all of us have visited that dark place at one time or another, we know what hopelessness feels like and for many of us, we were energized and lifted up and given strength by the encouragement of others who cared. And that is really what we're trying to help others with.

You're right in most everything else you shared in your post - there is no clear treatment and too many limitations to the treatments we know about. The science is bad and the government is colluding with ulterior interests. Period. Is there a longer-term benefit that is worth this kind of current sacrifice? Maybe. And I agree -time does help.

But those realities certainly shouldn't stop anyone from taking control of their own destiny and working through this on their own terms. This is our challenge, like it or not. We didn't ask for it but it's what we have in front of us. I believe the future will be much kinder to us.

There are many, many people who are doing things for the right reasons because they care. That is the energy you have to seek out and find and take advantage of. It's out there.

I don't share the same long history as some people do but I did go undiagnosed/treated for 16+ years. Maybe. The more I study lyme the more I think I might have been infected as a kid. But I've also struggled most of my life with viruses, which has made lyme treatment that much more difficult. And there is no doubt that this lyme & co experience has destroyed every aspect of my life.

But the more I learn, the more I understand what I'm missing and what to try next. It's important that we tell our stories because there are similarities in experiences and knowledge is king.

The other reality is that our society has grown dependent and too accepting of the government as our caretaker, provider, protector. Nowhere in history has this been proven a wise act of trust. So, why should it be wise now? My Lyme experience has given me a healthy skepticism of authority, which we should have had all along. None of it is fair but who said life is to be fair?

This Lyme experience has matured me in ways that I didn't realize needed that boost. I'm grateful for the tools and knowledge I've acquired because I know it will be useful throughout life. Am I bitter that I had to take such a destructive road to get here? Of course - I'll likely carry that to my grave. But information and motivation are better fuels for productivity.

I believe there will be a tipping point with this Lyme tragedy - that the jig will be up at some point. Likely a scientific breakthrough. But I'm not going to wait around for someone to rescue me.

You have to express your anger or it will fuel the illness. When I'm having my bad days, I avoid people LOL. I withdraw inward and pout a bit. I get angry. I feel a fiery resentment. I cry and release. And then I recover, and do things to protect and nurture myself. It's a process.

Find your path... find your peace.

-p

I ain't content with scraping by, however hopeless it may seem. I'd rather be armed with blind hope, optimism, and scarcely notice a difference in the status of my physical, mental, or emotional health (though, that has not been the case) than be that feel-sorry-for-myself, suicidal punching bag that I used to be.

"Let me just get by, while I wait on the world to change." Now, granted, that's a mentality that I still maintain to this day, just not in the same way. I'm doing all I can to better my health, try, try, try, and try again, and I'm making efforts to do some living beyond just working for medications, taking those medications, and otherwise sitting around the house all day (no offense to anyone who lives that way, as, for some, myself included, that's probably what is best for them).

I'm not gonna let it keep me down any more. 24 years old, 8 years spent trying to figure this crap out, and who knows how many more to go. I can't just sit here anymore. Now, I'm not making the progress I'd like, and the chances for failure are high, but at least I am trying to not let Lyme be the SOLE focus of my life anymore.

I don't encourage people to keep trying, push for more, because I want to.. what was it the guy said, defend the idea of hope and optimism, because I'm selfish, and not truly caring of others? I do it, because I used to be right there with the "give up" crowd, and realized that crap wasn't getting me anywhere but feeling even worse than Lyme already made me, wishing I'd die, etc. Again, the positivity isn't curing my illnesses, but it's doing a lot more for my drive than just lying down in the road.. either waiting to get run over or for, miraculously, an ambulance (the government, healthcare industry, etc) to finally happen by.

But, at the end of the day, if someone wants to take that route, I'm not gonna try too hard to stop them. I get it. Like I said, I've been there. Plus, I'm a believer that, in most cases, a person's gotta go their own way. It'd be nice if you could sit everyone down, say, listen, learn from my mistakes, but it doesn't usually work like that. People gotta experience it for themselves.

One thing I read earlier on this week though..

"It's good to remember the difference between stopping and quitting. This helps me when I'm feeling a bit lost or down on myself -- or during those times when I've just chucked these three ideas to the wind and sat on the couch all day instead. If you've ever strayed from what you feel you were supposed to do or who you were supposed to be - remember that everyone has to stop. Whatever it is we're doing, whatever our grand ambitions are in life, we stop. We have to stop. We have to take a piss, or go to bed, or go on vacation, or we have a kid and not have much time to ourselves etc. But quitting is stopping without ever beginning again. So as long as you're here, as long as you're alive and pulling air through your lungs, you can begin again. And if you begin again, then you haven't quit. So ****ing begin again."

Anyway, all that said.. I'm gonna keep plugging. Most of the rest of us are too.

If I've kind of missed the direction of the conversation, my apologies. Reading at length is difficult for my eyes, and I have one of those weird headaches tonight. At the very least, this will serve as a response to myself, encouragement to me to keep going. In that right, I am selfish.. haha. I do care about the people here though.. very much.

Sorry, if it's all blah blah blah to you. Really.. we have enough reasons to stay down in the dirt, besides us keeping ourselves there, because we think there's no point in.. like the one guy said, beginning again.

edit: words

Yeah I have definitely wanted to give up many times. It still happens on a weekly basis. I actually did give up about 2 years into treatment. Had been treating and working at the same time and just completely melted down.

I took a leave of absence from work and rented a place in the redwoods just south of the Oregon border in Northern California. Hiked and read, didn't treat at all unless smoking weed counts. I brought a portable sauna so I was able to keep detoxing. I then moved out of my apartment, quit my job, and went traveling around Europe, Northern Africa, and the Mediterranean for 6 months.

My energy had recovered somewhat in the redwoods so it was possible. I had to find hotels with a sauna as if I didn't use one daily I'd melt down. There were some close calls, like in Tangiers where I was staying in an airbnb. I had thought the public hammams would be a suitable alternative, but many of them aren't that hot and I didn't sweat much. I went 3 days without detoxing and felt like I was going to fall apart before I managed to find one in hotel that I paid to use.

Throughout this process my energy kept getting better and better after flatlining for over a year. Towards the end of my trip I was somehow able to do a 3 day hike through the Atlas mountains, and then started working out in my hotel gym. Then my need to sauna, which had been a daily necessity for the past 3 years slowed inexplicably to weekly.

I returned to the US and started treating again but my need to sauna/detox has stayed low and my energy has been good. So somehow the trip fixed me in ways treatment hasn't. I can't really explain it, but quitting treatment and traveling for period of time somehow resulted in progress that I couldn't achieve through other means.

Post-trip I've been treating aggressively for 2 more years (so 4 total) and it has been hell at times. I'm not at 100% but I think I'm going to try to get a job in my field this fall and see what happens. I agree that the disease is almost impossible to completely eradicate if you've had it long term (20+ years for me). I hope my immune system can keep it in check but I'm not sure. I think if I completely relapse I will just end it rather than go through the treatment process again.

Post Edited (project) : 8/4/2016 7:46:15 PM (GMT-6)