posted
I feel like by now I should understand better what is going on with me.
I had to stop treatment late in the fall of 2006 as my LLMD was under attack and his office was closing. I just gave up. It had taken me so long to get a diagnosis. I went through some tough times but was getting better.
I am back on Doxycycline, Zithromax and Flagyl. Will soon start Mepron.
I am nauseous most of the time. Tired. Achy. Every day is different.
I am embarassed to be so sick all the time. No one seems to understand.
Am I imagining this? Does anyone else feel this way?
My husband wants me to go with him on a business trip and turn it into a short vacation. I am too weak to leave the house. But feel terrible to disappoint him.
When I start the Mepron, I will be adding two other antibiotics to deal with Babesia. I have lots of fevers / chills, etc.
Within a few weeks of starting that, my husband wants me to go on a long car trip. My doctor said don't plan to go anywhere or do anything for three months.
Anybody else deal with this?
I vaguely remember (yep, serious Lyme Brain) that when I went through this before. After awhile, I started having some good days, then a few more at a time. Just as I started to see the light at the end of the tunnel, had to stop treatment.
Haven't gotten to the occasional good days yet...
Any ideas? Opinions?
I hate that I am such a drag but I am at the end of my rope.
Will check back later for any advice, opinions.
Thanks.
Posts: 49 | From Florida | Registered: Dec 2003
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bettyg
Unregistered
posted
mom,
so sorry for what you are going thru..
decline your husband's suggestions of GOING with him; you get worse will not make his days better.
just remind him that better YEARS are ahead; you just have to get thru this first.
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posted
Thanks Betty, I don't know why this time is so hard.
I did see significant improvement during first two years of treatment. But over a year off, before getting to the goal line: numbness in extremities, broke my foot last fall, slow to heal.
Local doc said Lyme relapse, but can't treat.
Some low dose of doxy for about a month. Later, bad respiratory issues, thought it was going into pneumonia, so longer course of Zithromax.
You know, can't mention Lyme but knows a bit what he is dealing with so tries to help me out.
Advised me to find another LLMD.
So now I am back on the path, but it is hard to rest. First time around I had alot of Chronic Fatigue symptoms.
I still don't have much energy, but can't make myself rest as much as I probably should for as bad as I feel.
Thanks for the support. I just feel like I am way in over my head this time.
I really want to get my life back. I think I can, this time. But can't seem to explain that I just need a little time to get through this.
Take care. Until later...
Posts: 49 | From Florida | Registered: Dec 2003
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posted
Maybe it would help to sit down with your husband and watch some of the videos on You Tube. I think you will find many of them if you google Lyme.
It seems to convince my husband more if he hears it from other people besides myself.
Or, show him some of the posts on this site including the success stories.
I had to send my husband and son off to a party tonight without me, so I know what you are going through. Posts: 92 | From home | Registered: Jun 2008
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bettyg
Unregistered
posted
mom,
you have a couple of areas ... fall ?? see my mind is gone like a wink of what i just read and breathing issues
yes, look at the LYME VIDEO COLLECTION i started at top of support.
watch ALEX's especially, iowa's 14 yr. old on ventilator/paralyzed/can't talk! there are just so many heart-wrenching stories out there.
just remember, you can come here and rant, rave, or cry ... we've all got broad shoulders by now!!
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posted
Thank you. Betty. Thanks for Newbie Package. I started reading some of it last night. Will work on trying to understand it a little at a time.
I can write (type) but reading is getting hard for me again.
I was an English major in college.
I have gone through several phases when reading was difficult or impossible.
Have to read really easy boks to bring my brain back.
So... back to domestic issues.... Part of my problem (and I didn't even know this was the case until very recently) is that my husband in in some strange form of denial.
I actually ordered a copy of the DVD of "Under Our Skin". One of our old college friends is a documentary film director for Swiss Television.
He came with a film crew to do a documentary on "Health Care in America".
My husband got them interested in Lyme. They couldn't do a full focus on that. That was not their purpose, but they used it as an example. They wanted to interview a LLMD, but didn't have the budget to travel lut of state.
I showed them "Under Our Skin" because they were interested. My husband left the room. He wouldn't watch it.
Later, when we got in to see my LLMD, he wouldn't go in with me to help me remember what the doctor said. (I knew I would forget, even with notes).
Some time later, I asked about these behaviors. He just said, I don't want to know about it.
This disease has stolen so many years. I had to quit work because I couldn't keep up. Was just too weak.
I have lost most if not all of my friends. No one understands why I can't make it ut for lunch, meet at the gym, afternoons of shopping, etc.
It is all I can do to keep my house (with help) and care for our creatures.
I can't ride my horse any more. But I have two, and they both need care. They don't get as good care as I used to be able to give them, but they are better off than many.
My husband has a whole separate life from me. He has had to do so. Or he would never get out of the house.
He really wants to do things with me but he sets the bar too high.
I am happy for him that he has rarely even been ill on a short term.
But he cannot relate to this long term, degenerative illness.
I would just like to go out to a movie. But so many of the movies areso loud --- action adventure. Very hard on the senses/nerves. But still, there is an occasional movie we both agree we would like to see. But we never go.
He adds on, he wants to accomplish so much in the same day that in the end, I am too tired.
Or, like now, he wants to go on a trip. I said I could go for a coule of days. We could go to dinner, lunches, etc.
He can go, enjoy the beach, go ride his motorcycle. I'll rest and then be ready to join him for meals. Maybe go to a movie. Simple things. It isn't much. But it s a compromise.
He wants long walks on the beach --- I can't take the heat.
He wants me to bring work-out clothes so we can use the gym.... Okay. Piling on...
I don't even walk around our neighboorhood for fear I may fall again.
He doesn't even know how mnay times I have fallen down the stairs, in the barn, going to the pastures, around the house.
But once I broke my foot, I got scared.
I am whining. Sorry.
I just need him to understand that this is temporary. And I have told him.
But since I started back on abx he has pushed for more travel than before.
I just need some time. You guys know. We never know how long it will take, but it will get better. I just need a break to allow me to take the meds, rest, herx, puke, you know, the usual... and then start getting better.
It helpss yo read that you both think travel right now isn't a good plan. I feel so selfish.
I have even told him to go on trips himself. Meet up with friends. But that doen't work for him.
I know,under circumstances, I am very lucky he is even still with me. And I am truly grateful for that.
Well... I am tired. Thanks for listening.
Posts: 49 | From Florida | Registered: Dec 2003
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bettyg
Unregistered
posted
mom,
in my newbie package, i believe i put them right up there in TABLE OF CONTENTS IN SUPPORT vs. showing names only ...
i wanted members/family members to be able to read some wonderful, thoughtfully written letters from lyme patients and LYME DAD.
find them, ask hubby to read them or PRINT OUT THESE STORIES .... may be they will get him OUT OF DENIAL!! which is making your life hell since he refuses to DEAL WITH IT!
getting to know and educate himself about lyme disease.
that was wonderful of your swiss friends of here filming and your showing UNDER OUR SKIN to them too.
how sad, your husband REFUSED to watch it!
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