I need support

I would like some ideas what to do. I filed for a divorce from my husband and bought a home. it is just sitting there waiting for me to move in. I was doing pretty good until the doctor starting treating me agressively with rifampin, azithromycin, minocycline, and mepron. I have become so sick with the herx and the medicine. when I bought the house, I did not realize how serious lyme disease was. or how bad you could feel on the treatment.

I was very weak and could not hardly go before this medicine. now, I am weaker. I don't think I can move until I get better. my husband is helping me with food water shelter and meds for now. but he is emotional abusive at times, and I live in sadness and a state of agitation here. I cry daily due to my illness and my situation. I fear I am going to kill myself I am so sick and miserable. I live at the end of the house with all my things half packed around me. but I feel living here is not helping me get well, and I fear if I move I will not be able to properly care for myself.

I have one friend and my sister do not believe how ill I am. they keep pushing me and say I am just depressed. and that if I move I will be better. I keep telling them I have lyme and trying to explain, but it is like they think I am crazy, and just downplay it. my friend wants me to go to the mountains on a trip, when I feel i can hardly get out of bed, trying to fight this. I have never felt this bad, or never knew it was possible to feel like this. my house needs some work and I can't get up there to have the floors fixed. I have a horse there too in the town 1 hr away that I have not seen in 3 weeks.

I just dont' see how people live thru this. this is the most horrible thing I have ever been thru. why do people not believe you have an illness? I was active, rode horses, exercised, worked. it hurts so bad, I feel so alone. how do you get thru it? I live every night in fear I am going to be a cripple and the emotional pain is so bad i can hardly bear it. I wish I had a therapist that could come to my home and talk to me. and I am terrified the medications are going to kill me. I wish someone would say it is going to be alright you are going to live thru this and you will get better. I have so much fear I went back on xanax.

I emailed you

I would dial back on the medicine. You are hitting 3 infections right now - the rifampin and mino for the bartonella, the zithro and the mepron for the babesia and the mino and the zithro hit lyme as well as other infections. Looks like you are having a massive herxeimer to be feeling like you are afraid you might end your life right now. That is a huge RED FLAG to me that you need to lay off the medicines and then re-start very slowly with something very simple like the azithromycin and then add in the rest after you stabilize on each medication.

Your life sounds stressful but I think you are feeling so depressed because the toxins from the bugs dying are shutting down your detox pathways. This will cause intense depression.

A couple of things to help:
- lithium orotate (raises neurotransmitter levels in the body and is natural and not prescription)
- coffee enema - flushes out the toxins
- zeolite to bind the ammonia that shuts down the neurotransmitter pathways

There are therapists that specialize in Lyme out there as well and could be a support to you as well. Here is link to a lyme disease therapist (I haven't used her) but if you would like to check her out:

http://www.laharter.com/

I felt TERRIBLY depressed when I first started treating heavily and that was with herbs. I ramped up to the high dose very quickly and it just sent my body into a huge herx. I wondered if I would ever get better. I did. It just takes the body time to process the heavy toxin load from when we hit it with anti-lyme meds, etc.

Feel better soon. You can get through this. Hugs!!!!

Hang in there!!

I talked to my regular doctor and got his psychologist to call me every two weeks for a session. I couldn't drive there, it was too far given my current state. They made an exception and call. It really helps to have that live person listen to whatever you want to talk about, especially when my family around me doesn't understand and doesn't want to either.

I have an ILADS member therapist who had lyme herself and is better, I see her twice a week! I have even called for emergency appointments.

IT REALLY STINKS, doesn't it? I've been through episodes of (almost) suicidal depression. I feel very alone.

But the herxing makes it worse. I suggest SLOWING down on the abx until you can get your life together.

My LLMD titrated my abx up very gradually, and introduced one at a time. And you must, must detox.

You can't go through all those stresses at one time.

Can you get a small apartment temporarily? I thought about doing that to get out of this moldy and allergenic house until I bought a new house.

Or what if you just got some of the most basic stuff and moved to your new house? Just set up a bed, a kitchen table, and some kitchen things?

I'm sorry about your friend and your sister. I'm super mad at my sister, but I'm trying to let it all go. She's a total craphead.

Don't even try to convince them; you'll drive yourself crazy. Let them go for now. Either that, or tell them if they really want you to move, they should help you. Maybe one of them can keep your stuff while you move?

Can you hire someone to help you?

Let me know if you need support, and I'll get my emails up and running. Yahoo keeps booting me out, bc it's an alternate email, and I keep forgetting my passwords!

Oh, I'm trying to look for a house and get my house ready so I can sell it, and it's hell. I'm going to have to hire someone, or several people. I've also thought of renting a dumpster, but it costs too much. I'll probably have to rent a Uhaul truck just to dump a bunch of garbage!!

All the best,

Margaret

Mystery, I was moved to write something, as I know personally the overwhelming pain and despair that such herxing can bring on in oneself. I have gone through the same a few times in the last few months, such as what you described above. I am sorry you had to deal with this. I hope and pray that you and your 'team' will be able to begin understanding any 'signs' leading up to any future herx issues, so you can call the Dr and get it taken care of before it gets severe.

When I read your initial post above, I was immediately reminded of a post I had written months ago to another in this site. It was about Moses, and how others held up his arms during a battle, helping him to endure when he didn't have the strength to continue. I was blessed to read the post immediately after my post. It was from YOU.


Posted 1/12/2014 7:25 PM (GMT -4)

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 or sad 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)

(And this is your response):


mystery1
Regular Member
Date Joined Mar 2013
Total Posts : 273
Posted 1/13/2014 3:21 AM (GMT -4)

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.
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I know this is long, but appropriate. I can speak for all of us here, I hope, when I say we are proud of you to not only have the courage to step out and let us know you need support, but that you keep going, even when it hurts so deeply. You can, and will get better. May your path be straightened and smooth, as you gain clarity and healing. Hang in there.

Hang in there, mystery. It was just a week ago that I was feeling as hopeless as you are. For the past three or four days I've felt SOOOOO much better! I'm still having problems with my memory and some bouts of mild confusion/dizzyness, but the depression/overwhelming anxiety, suicidal feelings have left me for now. As these diseases are cyclical, I understand that they may come back, but I truly believe that the periods of relief will grow longer and longer, until one day, finally, I am well again. I believe there will come a tipping point for you, as well. Your doc will hit upon the right combination and the scales will tip in your favor. Your brain will start to stabilize again. Just try to hold on and keep plugging away at these darned bugs. You will begin to win the battle soon, I know it! Me too!

I signed up with a good online therapy program called prettypaddedroom.com if yall are interested. you can get 8 sessions a month for 250 dollars and you write 8 entries into a digital diary for them to comment on to help you. this is not advertising, i just thougth if anyone sick at home like me needed some help, this would be good. you do it over Skype.

hi goimurph, I am so sorry for your suffering too. I too know that feeling of not having someone to hold your hand and really show you compassion. I just want everyone to tell me you are going to be alright and get well, and at least coach me thru this horrible time instead they say oh your just depressed. oh get up and push on. darn, I feel I am doing good like you said to get up from the bed and move over to the sofa and watch tv. I am having alot of mood swings and anxiety too. the meds make me anxious. having insomnia not sleeping well too.

my sister and my niece have not been to my house to offer me any support. I told my husband if I die to please tell them I just wanted someone to come by and show some compassion. I have told them how sick I have been for 2 yrs over and over. I try to understand they just are busy living their own life.

could you get support like me on the interent on an online therapist? also I have felt a little better today I started jumping on my mini trampoline. I started out doing it 2 minutes 3 times a day. it really helps. and I am doing clay baths. detoxing really makes a difference. I am having my mercury amalgam removed asap and doing a mercury detox soon, and I found out I have a mthfr gene mutation and need supplementation with methyl folate and b 12, and glutathione, which I hope will help me too. seeing increased energy and improvement with mepron. I have babesia no doubt.