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Me again: Depressed, want to cry, can't sleep. Sorry!!! Too deep in the hole by now.

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Posted 1/12/2014 3:46 PM (GMT 0)
All my support systems are giving out from under me. It's like I was on solid earth, (but sick), and now the earth is crumbling under my feet (and sicker). I'm so sad.

I'm losing my friends, whether to death (just the one), or indifference. I think I've made some bad choices in the friendship department.

And at this point, since I can't take abx., I'm so sick, I can't just go out and socialize, be all bouncy, and make new friends.

I don't have any family per se. My sister is in a world of her own. The others are in Europe, and have all but said that they couldn't do anything to support me or support my health.

I know I sound like that children's song that says, "I could just go eat worms."

But, I'm basically home alone, unable to keep up with things. I have my dogs, but that's about it for now. I have some good friends in other parts of the country, but only a few.

Personally, I think people can be really crappy, esp. if they don't understand anything about being chronically ill or having no energy. They're living their lives though; what can I say. The only people who understand Lyme other than the actual patients are husbands, partners, and family members. I don't have those.

Ok, this takes a lot on my part, but I do think of the S. word. However, I'm fighting as hard as I can. Fighting, fighting. Oh, and yes, I'm on antidepressants, Cymbalta and Lamotrigine, but they aren't helping.

I feel so stupid telling you all this!! Thanks for all your efforts to help me. Margaret

Some of you have emailed me, so maybe that's all you can do.
Posted 1/12/2014 4:44 PM (GMT 0)
I'm so sorry, I will pray for you! I have felt very very low. I do have family though, even that sometimes becomes a difficulty. I have six kids to care for, I thank god for them because they keep me moving and days that I feel terrible I know if it weren't for them I'd be in bed. If you ever want to talk, I would be more than happy to lend an ear. My name is Renee, I'm a 37 yr old mom to 5 sons and one daughter.
Posted 1/12/2014 4:44 PM (GMT 0)
Dearest Margaret,

I wish I lived close to you as I would come over and give you a big hug!!  When I became sick with lyme I found out who my "true" friends really were and guess what?  I didn't have any!  I thought I had my long distance best friend but she turned out to be a user and that really hurt me.

Hang in there okay?  Can you get out at all and take yoga classes?  Anything?  Do you have any hobbies? 

Anyway, I feel for you and can really relate...

Big Hugs!

Denise

Posted 1/12/2014 4:57 PM (GMT 0)
Maine, that sounds overwhelming to me, but if it helps, that's really good.

Deejavu, I can barely get out of the house at present, mainly because I'm not sleeping well. I think that thread on sleep might help. I just saw it somewhere.

I did start a knitting class, although it seems like as soon as I open my mouth, stupid things come out of it.

Do you know if brain lesions and that kind of thing can heal as well? I wonder if brain damage is permanent?

My SPECT scan showed a severe loss of perfusion of blood through the brain.

I think I need to focus on finding a protocol and finding ways to sleep right now. I might have to live with being alone for awhile, but it's the worst time for me to do so.

Margaret
Posted 1/12/2014 5:08 PM (GMT 0)
Hi again Margaret,

I'm not a doctor but it could be that you may have an overload of ammonia in your body and brain and that could cause many of the symptoms you are feeling.

Are you open to taking any of Dr. Jernigan's botanicals?  One of them really binds up that ammonia and toxins and people swear by it.   Another one of his botanicals (Borrelogen) really does help purge the lyme bacteria out of your body (IgeneX tested it against conventional antibiotics and Borrelogen purges so much more bacteria). 

If you ever need help with knitting, send me an e-mail (I'm not an advanced knitter but I'm knitting all the time)..

Hang in there okay?

Denise

Posted 1/12/2014 5:46 PM (GMT 0)
Thanks, Denise.

It wouldn't hurt to get the book.

I looked at the protocol, and the products weren't anything I'd heard of, you know, as in Cat's Claw or Astragalus. But then, Cowden also uses a lot of things I hadn't heard of before.

I've got to just choose something and go with it.

Did Borrelogen make you herx?

I'm tired of looking for LLNDs too.

There is an ND in Boone (nearby town); I might look him up whether he's Lyme Literate or not.

There's also a doctor down in the valley (sounds like the song)! who uses natural medicine, and claims to have worked with Lyme. I think he uses a lot of really costly methods though, and I've heard mixed things about him.

I will look them both up online.

You know, a lot of people recommend different protocols, and now I'm starting to get confused.

But I love your posts, and the fact that you're answering my posts!

:) Margaret
Posted 1/12/2014 5:46 PM (GMT 0)
I'm so sorry, Margaret. I'm about your age, unmarried, no boyfriend, no close friends, and I know exactly how you feel! When I feel sad because I don't have a significant other, I remind myself that just because someone is your partner, doesn't mean they will understand or be supportive of the Lyme. And for me, being with someone who is SUPPOSED to be supportive but is NOT--magnifies the loneliness. In other words, I feel less lonely on my own than I did with an unsupportive partner. Does that make sense?

I think one thing we BOTH need to try to remember is that we are not alone because we have this group. There are people here who understand what we're going through and truly do care. Is there any way that you can get involved with a support group in your area, as well? I've gotten involved with a local group that meets every couple of weeks. It helps, in addition to having the group here, to have a group of people to talk to in the flesh.
Posted 1/12/2014 5:50 PM (GMT 0)
Totally agree with so scared. If a companion isn't supportive the way you need it makes you feel ever. More let down and lonely, been there.
Posted 1/12/2014 6:21 PM (GMT 0)
Yes, I'm sure you're both right, but what happens when all of a sudden 90% or more of the people in your life turn out to be a lot less supportive than you thought they were?

A bunch of people have mentioned a support group to me, and there really aren't any in the area, certainly not any that are specific to Lyme.

I've thought of starting one, but I would have to be much better.

There is a chronic illness support group I've been to a few times. I'll have to see if it's still going on. I tried to befriend some of the people in the group, but that sort of led to dead ends. Had lunch a few times here and there . . . .

The thing about being my age (53) is that most people are really entrenched in their lives by then. They're married, the younger ones have children, they have extended families, etc.

And then they look at me and my Lyme thing, and think I'm really Wacko (that is, if they haven't heard of it).

Plus, people in general don't want to hear anything about illness (griping), and they don't even want to be around anyone who is seriously ill.

You're right though, about having honest friendships, and getting rid of the dead weight. What happens then though? It's so scary!!!

Margaret
Posted 1/12/2014 6:52 PM (GMT 0)
Hi again Margaret,

I'm 57 and lost my first husband to cancer, then I remarried too fast to a guy that reminded me of my first husband, BIG, BIG mistake...  It was when I was married to #2 that I became infected with lyme and all he did was yell at me for not having dinner on the table (I was working about 50 to 60 hours a week), he yelled at me for not cleaning the way I used to (before lyme), he was NOT supportive, etc., etc. 

So I asked him to move out and find his own place because I couldn't take the stress of that relationship anymore.  Sometimes having a companion is a good thing but in my case it was a very negative thing.  When he finally moved out I felt like 1000 bricks lifted off of me..  I knew I was not going to get any money from him (he was a cheap *****) so I didn't even ask him.   But getting rid of all that negative crap was so good for my health.  I had to cut corners financially but I managed (barely). 

As far as Jernigan's protocol, no, I never herxed from it.  I wish you could talk to Gary and Rhonda (they have not posted on this site for a long time) but they are doing great (they both used Dr. Jernigan's protocol).  And you should talk to Heather's Dad aka Don.    All these people went to Hansa, I did not.   Last I heard, Dr. Jernigan's book is sold out...

It cost me about $100.00 a month plus the cost of epsom salts, hydrogen peroxide and some other extras.  It was one time I needed to take 3 of his botanicals so it cost me $150.00 for 3 months.  

Anyway, a bit over 3 years ago I moved to Vermont because I wanted to leave New York and I always loved Vermont and sure enough at my age I made new friends. 

Please don't think that because you are 53 that you can't make new friends, you can!!  I live in the boondockies and if I can make new friends,  you can too!   It just takes getting out there where there are people.   People are really friendly where I live..  Or maybe I smile too much at strangers!   I was always nutty and still am!  I also met this guy a couple of years ago and we have a nice relationship (not marriage wise but nice!)...

My point is not to lose hope okay?  You kind of remind me of myself... I really wish we lived closer, I would clean up your place and cook for you!!  And then we can knit together...

Denise

Posted 1/12/2014 7:13 PM (GMT 0)
I live by myself in a foreign country, my husband passed away 2.5 years ago. My family is literally on the other side of the world. My in-laws are literally (again) down the street but they hate foreigners so even though they know that I am this ill they have not even called me. If I did not have my church I would have nothing. They are the only ones who care. People have come over and cleaned my house, shoveled my driveway, brought me food, taken me to dr appointments… I don't know what I would have done without them.

Post Edited (Lymebabe) : 1/12/2014 3:06:36 PM (GMT-7)

Posted 1/12/2014 9:05 PM (GMT 0)
sorry about your situation, this place is filled with so much info, you are not alone per say..


I did the 'impossible' i had no one and i could not take care of myself,

i hired a home care co, and had to hire others to help otherwise i would not have made it
and the internet, sites like this,

i say turn to a church, even if u dont believe, just so u can reach others for help


I still dont have friends, cause no one understands, cant make plans, i got a chip on my shoulder from what i have been through

i cant talk much anyways from babesia, and neuro probls

I cant do anything except lay down and watch movies at home or surf the net,


i had some family, and they did not care, so i know the feeling of being abandoned , even at my age, it hurt, big time


now online lyme friends are my new family, we are a tight bunch.

tips here adn there on this site will help, supplements, natural stuff, to start you on your way to healing

slow and steady, it will get easier in time, a different journey....
Posted 1/12/2014 11:25 PM (GMT 0)
One of my lessons learned from Lyme:

I am my True Spirit, that Which can not be seen, but is Alive and Breathes Light whether I feel like it or not.

I am not my body, feelings, things, as I call all of this my 'paper bag.' And like a paper bag, this is strong but weak, and one day will be no more.

My Spirit IS and always will BE. My Spirit is that which touches your Spirit. We are all connected in the web of Life. Some strands (people/relationships) of the web are stronger than others. Thank God. Those whose strands are weak in my life now, are meant to be away from me. There is no 'loss,' as there is knowledge in the Universe that I do not now know, but will one day. Until then, I am grateful the Universe is keeping those who aren't 'for me,' far away from me. This is a gift from the Universe/God: Keeping me safe from harm.

And Margaret, even if you don't see/feel it now, I also know that like Moses, on hill top, holding the staff up with lifted arms, you're winning the battle against Lyme. Like Moses, you are fighting with arms raised high, your Godly staff (faith/hope) in hand. And, like Moses, at times you tire, and it is THEN, that you MUST remember that like in the bible:

You, like Moses, are asked to SIT DOWN on THE ROCK. Sit down Margaret. Take a load off. This is YOUR TIME, for YOU. And that's okay! This is tough, and you can't do it alone. It hurts, please feel that and cry. Let us know. You have something funny to share, please share. You have YOU to share, thank you, Margaret. Thank you for sharing YOU with us.

You, like Moses, are surrounded by your 'chosen' family, and WE are helping support your arms during the times you need us, and you WILL WIN YOUR BATTLE!

I hope this makes some sense. We all are like Moses, with our arms held high, fighting the fight and we all get tired. I pray every one of us have prayers and tangible help from those that are able to step up and support our arms when we need it.

Post Edited (In_A_Cocoon_Now) : 1/12/2014 4:36:13 PM (GMT-7)

Posted 1/12/2014 11:33 PM (GMT 0)
Today my pastor asked how I was doing financially and offered to pay for my medical bills. I was floored. I have been coming to this church since March and totally did not expect something like that. I will not take him up on the offer until I am completely broke but I was really touched.
Posted 1/13/2014 2:39 AM (GMT 0)
Oh Margaret, I wish I could give you a big hug. Things are going to get better, I promise! Keep hanging on and never give up hope.

I am going to email you too, okay? :)
Posted 1/13/2014 7:21 AM (GMT 0)
margaret hang in there. we are all here for you. thank you in a cocoon for that post. I cried when I read it. I want to hand that about spirit on my wall. I tell myself that every day to hang on you are still you inside, and I will beat this. I am strong.

I am already improving on azithromycin after 4 months and my understanding that is a weak drug for lyme. I am hoping when I see my lyme md in 2 weeks he will put me on something better. I have not actually seen him yet, only talked over the phone and internet. He will be doing a full evaluation in 2 weeks and I can't wait to see him. I want to get well.
Posted 1/14/2014 1:14 AM (GMT 0)
HI everyone,

Thanks so much for your uplifting posts. I didn't know I was Moses, but then, there you have it :) Speaking of church, I'm not really a church-going type--spiritual but not religious--and all that, but that doesn't mean I won't go to church if I need company.

I went to the UU church a few times, and the Episcopal Church, where they had a healing service. It's just, the better churches are in Boone, which is a ways off from here (pardon poor grammar).

Deeja, though he's better as a friend, my ex-boyfriend was like that. He yelled at me a lot. He didn't really put me down, just yelled. It's good he's no longer my bf, and I need to move beyond him in general, but right now, I don't have enough people in my life, period.

Lymebabe, that is amazing, the thing about your pastor. Holy Cow! Which country do you live in, if you don't mind my asking?

Blue, I got your email, and it was wonderful.

I have a new primary care physician, and I have no clue what his attitude is towards Lyme, but he did say that tests for Lyme are inaccurate. Otherwise, he kept his mouth shut. But he seemed really good, attentive, and listened carefully. However, when I described my situation to him, I found myself listening to myself, and it sounded awful. I got in the car and cried and cried, just from having told someone about my situation, if that makes sense.

Now, I'm waiting for fennel tea (great for tummies btw) and I'm very tired. I have to put away things in the kitchen (yikes). I'm still making homemade food for Sophie (canine), as per vet's orders. I'm sad, but ok at this instant.

I'm making serious plans to move out of this house. It's a fabulous house with a view, and land on the river, but it's a lot of maintenance, I'm almost certain that there's mold. Plus, my land is one steep sob slope, with erosion problems, and a yard that's falling apart, not to mention grape vines that need pruning, etc.

The question is where?

I'm not looking for answers yet.

M
Posted 1/14/2014 1:30 AM (GMT 0)
Hi Margaret, I am here in the US. Originally from Europe.
Posted 1/14/2014 2:05 AM (GMT 0)
From which country? My mother was Swiss. Margaret
Posted 1/14/2014 3:53 AM (GMT 0)
Czech Republic.
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