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Lyme Disease
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Posted 9/2/2013 1:12 AM (GMT 0)
This disease is taking a toll on all my relationships. My friendships, with the exception of maybe 1 or 2, are gone.

My family has been running around for me the last 6 months because the vertigo keeps me from safely driving myself and my son. They take me to the doctor, they food-shop for me, they run me back to my apartment for my mail.

I finally subletted my apartment because I can not take care of it- or afford it because of the cost of treatment.

It is wearing everyone down. I can feel the resentment growing...it is subtle, but I can just feel the tension mounting and it feels like a time-bomb.
Posted 9/2/2013 11:46 AM (GMT 0)
Me too!

Everybody needs a piece of me, and I'm all out of pieces!

I've been going off on people a lot in the last few weeks.

I have no fuse, so don't even try to light it!
Posted 9/2/2013 2:32 PM (GMT 0)
Take a deep breath and remember that those with these infections can be quite ill!! And if you are in need of that kind of help - then you are quite ill. Those that are compromised to that level are often compared to those with congestive heart failure in research articles and it's stated that the same level of impairment exists.

www.hindawi.com/journals/ipid/2010/876450/

"There is also evidence that symptoms of CLD can be severe [4–8]. The Klempner trials described the quality of life for patients with posttreatment chronic Lyme disease (PTLD) as being equivalent to that of patients with congestive heart failure or osteoarthritis, and their physical impairment was “more than 0.5 SD greater than the impairment observed in patients with type 2 diabetes or a recent myocardial infarction” . Fallon et al. described pain reported by patients with Lyme encephalopathy as being “similar to those of postsurgery patients”, and their fatigue “was similar to that of patients with multiple sclerosis.” Limitations in physical functioning on a quality of life scale were “comparable with those of patients with congestive heart failure” . "

(4)B. A. Fallon, J. G. Keilp, K. M. Corbera, et al., “A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy,” Neurology, vol. 70, no. 13, pp. 992–1003, 2008.

(5)L. B. Krupp, L. G. Hyman, R. Grimson, et al., “Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial,” Neurology, vol. 60, no. 12, pp. 1923–1930, 2003.

(6)M. S. Klempner, “Controlled trials of antibiotic treatment in patients with post-treatment chronic Lyme disease,” Vector Borne and Zoonotic Diseases, vol. 2, no. 4, pp. 255–263, 2002.

(7)D. J. Cameron, “Clinical trials validate the severity of persistent Lyme disease symptoms,” Medical Hypotheses, vol. 72, no. 2, pp. 153–156, 2009.

(8)X. Zhang, M. I. Meltzer, C. A. Pena, A. B. Hopkins, L. Wroth, and A. D. Fix, “Economic impact of Lyme disease,” Emerging Infectious Diseases, vol. 12, no. 4, pp. 653–660, 2006.


I feel like what I just said isn't very clear - if this is the case I'm so sorry!! The brain is not waking up this morning!! A long weekend with two young grandsons in the house is taking it's toll!! LOL!
Posted 9/2/2013 2:38 PM (GMT 0)
Thanks, Traveler.

It made sense to me! lol.

I think what is so frustrating, is that everyone seems to think, "Oh you have Lyme Disease- I had it before, too." And it's like the conversation just ends. It doesn't get taken seriously.

I actually had a family member tell me that I am miserable, and that Lyme isn't "cancer." This person went on to say "In fact I know people who do have cancer and they live more productive lives than you."

It really hurt my feelings.

I just want to be better so that I don't need to depend on people anymore.

I have a son to take care of.
Posted 9/2/2013 2:51 PM (GMT 0)
I'm not such a nice person to talk to when someone gets flippant about Lyme! devil LOL! My response would have been something to the tune of "Well good for them that they didn't get as ill as I am!" LOL! Like I said: devil

Don't forget, just because someone has cancer, if they are in remission, they can live full active lives just like we can once we reach that point in our disease!
Posted 9/2/2013 3:27 PM (GMT 0)
Binduspire I'm so sorry. someone said something real stupid to me too and all I have to do is just let it go and pray for them . it is hard, I'm like you I have a 2 year old son to take care of and his father is several hours away and is not taking Lyme disease seriously. The vertigo is very debilitating I'm really praying for your full recovery and full healing so you can fully function again soon.

And my circle of friends has gotten smaller and at first I was depressed and upset. Now I'm thankful and grateful for all that's left they are my true blue ride or die friends!
Posted 9/2/2013 9:18 PM (GMT 0)
My phone doesn't ring often and when it does, it's usually a telemarketer. I've gotten used to it, though. You find out who your true friends are. Out here in the PNW, it's not known by many, including me before we were diagnosed, so when I tell people we have Lyme disease, they usually give me a blank look and often say "well, you look good", which I know many of you have heard a time or 2. A few will ask what it is.

I'm sorry binduspire, for you having to endure the losses and having to feel so dependent on others. I've gotten to the point where I try not to ask a lot of my dh, but I'm not doing as badly as you are. I'm worse than I was from stress, but could still be a lot worse. Hopefully you'll experience some healing and get back to doing more in the near future. It may take a while.

We have new neighbors and they have been taking out a lot of trees with a back hoe, so lots of noise and a backup beeper. It wears on me and sometimes I get woke up by it in the morning. I did talk to them about my daughter's problems from Lyme, mainly talking to the Grandpa. He seemed to listen better than his son. I mentioned her sleep issues, and mentioned the times she has been waking up lately. Fortunately for her, she's on a much better schedule this summer. They have waited until after 9 to start up, so I appreciate that. They're working next to us today and started later. But the constant noise does get tiresome. I just keep telling myself that this won't be the norm there. They're going to be putting in a variety of trees, so it will be an improvement. He wanted to get rid of the scraggly stuff in preparation for that. They're nice folks and I'll have to thank them for starting at 9.

This forum is so nice, so we see we aren't the only one with these issues.
Posted 9/2/2013 11:58 PM (GMT 0)
Binduspire,

I know a couple of women who have had both cancer and lyme disease.... and both women said they'd happily trade lyme for another battle with cancer. The experience of these two women was that lyme was far worse than their cancers.
Posted 9/3/2013 1:09 AM (GMT 0)
That would be tough to handle. A few times I've said I thought cancer would be easier, just because people accept it and are willing to help the person.
Posted 9/3/2013 2:01 AM (GMT 0)
I so know what you all are talking about. I have 3 boys to raise on my own and it's not easy. I have often said that the treatment we go through is like going through chemo, but I just get blank stares. When I tell people that I have Lyme, they say "Well at least you know and can get treated" then when they see me later and I say I haven't been feeling well, they say "But you look good, aren't the abx working?" ugh I have no words.

I have a hard time with my weight, I have always been on the thin side. But now with the abx I have lost a lot of weight and have no appetite. I actually had a gf of mine tell me I look "sickly and pale", as if I want to be this way. She said I need to eat hamburgers and pasta....don't I wish I could eat anything I wanted once again. Those were the days.

I miss that life I had, when I could workout with stamina, meet up with friends and have a glass of wine. Act normally without feeling like I'm falling apart at the seams. I remember the days I used to be able to do things with my boys that didn't revolve around sitting at home watching movies and I remember the life I had when I actually went on dates with nice men. I do wonder if I will ever get it back.

I have no one to help me through this, and I do feel like if I had cancer I would get more attention and help sadly enough. So I get it when you all tell your stories. It is hard being your own dr too isn't it? How do we know if the tx we are doing are the right ones, or if the diet we have is helping. I don;t even know what to eat anymore I am so confused by it all.

I do know that I am glad to have you all here. I have been so sick I couldn't sit up but the past couple days felt a bit better...maybe there is light at the end of the tunnel? I pray that we all get out of this soon!
Posted 9/4/2013 12:22 AM (GMT 0)
Like Trav, I can be feisty so if I was with anyone who was flippant or rude to an ill person - doesn't matter whether I understood the illness or not - I would not stay silent, that's for sure. I don't know how people, family or not, can make such judgments. It's interesting because when Toby was diagnosed with ALS, everyone was so worried, but now that they see it as a misdiagnosis ,(and he has Lyme instead) so they think everything is fine. Well, it is good in the sense that he isn't getting worse -with his life threatened- but it's not like he is fine. Lyme is just so misunderstood. Cancer can be a horrible illness to have. I have lost two family members to it, but Lyme is also horrible. It is wrong for anyone to compare or qualify such illnesses. Compassion and a willingness to be there for people suffering from chronic illnesses is what's important. Blessings to all.
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