In-A-Cocoon, how are you?

Hi M, thanks for asking.

I had shut down and stopped taking care of myself since my last 'see no LD, hear no LD, say no LD' dr appt a few weeks past. I had stopped all my natural protocol I had been on for months. I had stopped caring about my diet. I was just starting to get my head back on straight last week when family issues came up and knocked me down again.

Presently, I'm not doing well on any front. I was delusional thinking my family of origin cared about me, but now I know they have officially turned their backs on me. Out of my four sisters, three enjoyed themselves with a week long cruise two weeks ago along with one brother(no invite to me, nor any clue they did this), and then I find out via a FB post the one sister got married this past Sat. I was not informed nor included. No surprise, but devistating to me. I've been there for these people all of my life. I've put their needs before mine too numerous to count, they have used and abused me all my life and this was the last straw. They know of my LD dx I finally got last Sept., and not one person has come forth in any way. I haven't heard a word from them since my dx. Although two sisters had repeatedly said pre-dx that they would be there for me 'if I ask.' Well, I did ask. I asked them to at least call/text me once in a while to see how I'm doing. Not once did they do this. I thought all the years of me struggling with so many health issues, finally getting the dx people would start to understand. I have been delusional. And two sisters live 1/2 block and 4 blocks from my house.

So, with all the fun these co infections are, I had a melt down and lashed out via private messages to these three sisters letting them know they are dead to me, just like the two adult children they had who died in seperate car accidents. I said I hope they rot in hell. Yes, this is not the real me, but I'm so sick and struggling to get help and I'm on my own. I am not well. I would have never done anything like this but now, I deal with rage, impulse control and lots of other fun gifts from the LD/co. No one I know understands, nor is trying to understand.

Then, yesterday, my fiance has his breakdown and tells me that he is unable to believe I have LD/co although I have the positive IGeneX test, and symptoms that he has seen start and progress over the seven years we've been together. He thinks I just want to be 'sick' and that I want to stay this way, and that I really dont' want to be well. He told me that he believes the LLMD I saw who said I'm 'only depressed' and that if I take an antidepressent 'all my symptoms would go away.' He wants me to get on an antidepressent, and he wants us to go to the LLMD that we know will accept my IGeneX test. I don't want to go the antibiotic route first. I want to get all the research I've done and get on a natural protocol that we fine tune. That being said, he said he would 'help me' get the info together and organized but, he wants me to go to the LLMD 'just to see if they say I do have LD.' He said I don't have to go through their antibiotic protocol, but he wants to hear a dr say I have lyme/co. He is willing to spend all that money and time to be able to believe me, as I waste away in front of him. I'm going crazy. That's what all of this must be about, because this cant be really happening.

Yesterday he was finished in our relationship, until we got through a lot of discussion and tears. Now if I go along with the antidepressents and all the hoops he wants me to jump through, and he still doesn't believe me, if he does end our relationship I have no where to move to and no one to help me. If I lose him I'll be on the street. I don't have much coming in with disability, and so I do not know what I will do if this happens. I don't want to stress about this, but now that I know he is having such a tough time believing ME because of all the lies and runaround I've gotten from the 'professionals' I'm just sick to my stomach.

I know about the medical field. I suffered from a torn meniscus for 8 months because the 'professionals' only did an xray and saw nothing, while if they did their job correctly and did an mri they would have found it and I would have been saved from months of severe pain while I worked on my feet, and with undx LM/co to boot, and maybe not have had to get surgery. I have told my fiance all about the many times the med prof dropped the ball on my care, and yet I'M STILL NOT BELIEVED I AM THIS ILL. It's like I'm some really ignorant, uninformed person who doesn't have the ability to know that my body/mind is really ill and I have all these really noticeable symptoms and yet, they are telling me I'M LYING. Why the hell would anyone lie about this?!

It's like, open your eyes and just believe me!!! I can't do anything over an hour as I'm just wiped out! The pain is everywhere in my body, and my personality is noticeably changed. I've researched and learned so much, but no one else has stepped up to help me. My daughter said in the beginning she would be my health advocate and she hasn't. Nothing. I'm really, really getting close to my end. If any more things happen I'm not sure how much I can endure.

So, that's how I am. Sick, tired, beaten up, not believed, very little support, and possibly looking at being homeless. I know my fiance is sad, I'm unable to share in all the things he does outside the house, but it's not like I've not been trying to get help. Everyone else has just dropped the ball, and I'M THE ONE SUFFERING!!!! And, I'm not being believed, let alone truly supported.

My story is being repeated all over the world. It's killing us. Slowly. I'm tired of fighting for help and getting nothing but more pain, suffering and abuse.

That's how I am right now. Thanks for asking.

Cocoon--I am so, so sorry to hear this. I have to ask, though--why don't you want to take anti-depressants and/or antibiotics?

Other things to consider if you have depression is toxic mold and yeast. It's another crazy path but you may want to consider in conjunction with the lyme. Mold can get into your brain as well and cause problems. You can explore those with your lyme doctor. Don't bother talking about that stuff with a regular doctor.

I'm going to explore it at my next appointment. I do have lyme but want to check out this other stuff well.

There are plenty of natural treatments for all of this stuff, that aren't over the top expensive. I'm doing natural treatments and slowly improving.

I agree that a detox diet is great way to start. Good luck!!

Cocoon - I understand why you won't take anti-depressants. I won't either....because I'm not depressed - I am truly sad, and physically hurting because of my illness.
My dear father is in a full care facility now due to Psychiatric meds that put him over the edge. I'm not saying they don't help people in crisis', but because of my personal experience...I choose to not take them.
As far as antibiotics - if you feel your body can't handle them...then the natural route is what you should do. But, they are expensive...I, too am struggling financially...haven't worked in a year...and my husband's income isn't enough.
I can't imagine how you must be feeling without a support system.
Is there anyone in your extended family...that you could reach out to - even a cousin....or how about a friend?
Yes - I, too know about the medical field...my son misdiagnosed for 9 years - had celiac disease, but all the docs said he just needed to eat more meat. What a joke!
I think you should take your fiance to the LD and have him hear the diagnosis...even though you shouldn't have to...he should believe you. BUT, you are in survival mode now...
Lastly, maybe your fiance doesn't mean everything he said...maybe he will come around once he thinks about it.

Hang in there....I'll say a prayer for you...

In_A, I'm so sorry you are going through this. This disease really sucks! I hate how your family is treating you. I'm wondering if your sibs are related to my sibs;)
As for my lyme diagnoses. I still go in and out of believing it's true. My husband wouldn't believe it until I took him to my LLND. about once a month he goes into denial and I post my lab work on the fridge for a few days.
Hang in there!

I just reread your original post and remembered what you said about being homeless. First of all, I hope it never comes about. One, I hope your relationship with your fiance works out. Two, I hope that with so much family around, someone would step up rather than see you end up on the streets. But you reminded me of something someone wrote about a while ago--wasn't there a home opening someplace for sufferers of Lyme who needed a place to stay? We need MORE of these! Places where Lyme sufferers can live, help each other with the daily chores of life, and support each other emotionally. NO ONE should end up homeless in this country of excess and waste--least of all people who are suffering from diseases that make everyday tasks nearly impossible at times!

Post Edited (soscared13) : 5/27/2014 1:48:45 PM (GMT-6)