posted
I posted here a long time ago with my Lyme story (almost 4 years ago if I recall correctly)...and here I am again, unfortunately.
I don't even know anymore what is going on with my health, my future. After my last set of IV Rocephin, I was fine for about a year...
..up until January of THIS year, when I suddenly became very tired again, and as time has gone by this year I've slowly backed off of working, until now, when I'm lucky if I work eight hours a week doing a job I hate quite a bit, and then have to spend the following day(s) recovering from the exertion.
Thankfully I had just graduated with my B.A. before the fatigue set in, but obviously it hasn't gotten me anywhere in the REAL world, since I've been too bedridden to do anything about it.
Needless to say I am dirt poor and certainly don't have insurance, let alone money for food nine times out of ten. What I want more than anything is to GET BETTER for REAL.
I don't know what to do anymore. I can't pay to see any LLMD; I just met with a doctor at the local community action agency who told me I had fibromyalgia and prescribed a pain medication that I can't at all pay for or qualify to get through their medbank program (you need a minimum income, which I don't meet).
It's so hard to just NOT give up. That's exactly what I want to do. I don't even have it nearly as bad as I used to, but being too tired to have my life, to work, to socialize, to do things I like to do, it just kills me.
All the pain, the memory loss, the mental disorders, that's fine....just take away the FATIGUE!!!!
Sorry, kind of reaching the end of my rope here. I want to get hired with my degree and do a job I love to do... not scrape by on retail hoping I feel better some days. I just want my POTENTIAL back...
Anyway, sorry if that was too long, I just took an Ambien and haven't been able to sleep because I'm stewing over it all... I know I sound a little crazy (aren't we all?) hooray for even more fatigue tomorrow
But I would love some words of guidance, from somebody who could help me decide what to do with my life... hell, I want my mother to take care of me forever. haha. I just feel so ALONE in this sometimes, when everyone else thinks I'm just lazy... Please help. Posts: 20 | From Frederick, MD | Registered: Oct 2005
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posted
It is very lonely to be so ill. Normal people cannot concieve of the profound fatigue we have experienced, so you got to forgive 'em for not getting it.
As you have heard a million times, you can't control anyone but yourself, so hold your head up (if you aren't too tired, sorry couldn't resist) have faith in yourself, and put your thinking cap on.
Supplements may be your only way to go. My suggestion that I have had some success with is focusing on anything that lowers inflammation, enzymes to help with processing them, B vitamins, Omega 3 6 9, the critical amino acids that create ATP and reduce lactic acid.
Vitamin Shoppe always has a sale table with 50 to 75% off as items near their expiration date and I am always checking there.
Bulk Nutrition online sells a lot of stuff in powder form and kits to make your own capsules, so you can save a lot and it's kind of fun.
It will be harder for you, but not impossible.
Good luck to you.
-------------------- 3 Strains Mycoplasma and Chlymedia 2001. After treatment fine for all 2004. Major symptoms since 2005. Diag Aug 2008 Lyme. 400 mg/d doxy 500 2/d Ceftin Posts: 164 | From Texas | Registered: Jun 2008
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posted
Hi - sorry you're feeling this poorly. I personally think the answer to being to access our potential and very life again will come from finding remedies that will help us.
Maybe you could do a search here for fatigue and read about the different remedies people have tried.
All the people in my fibro group used to take Supermalic to have more energy - that's a combo of malic acid(from apples) and Mg. We are severely magnesium-depleted, which reduces our energy.
And my fibro turned out to be Lyme and I am successfully treating with clindamycin oral abx, a couple 150mgs/day.
The things I have found to help my symptoms free me up in the ways that those symptoms used to block me, and the symptoms I still haven't treated for successfully still block my freedom.
So it's an exploration, is the way I look at it now.
And yes, money is an issue, so to always be examining that for how we can acquire it/borrow it/be gifted it, barter for something, etc.
I just read your post once more. Before I knew I had Lyme, and was laid up, I used to try to pursue my interests in whatever way I actually could, even if it meant doing them in a much smaller, more private way, so as to still be the person I was. This made me happier, and frankly, I did a lot of interesting projects that way. Like living life in miniature.
Posts: 13116 | From San Francisco | Registered: May 2006
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Yikes, I just want to send you a big hug. You're not alone. Lyme does drain all you energy and money. I hope you can find some kind of program in your area to help you get treatment.
But I know it's not that easy, when your feeling so yucky. I don't have any great answers, just wanted to send you a hug, and hope you find some help.
posted
If I ever win the lottery, NO ONE would have to through what you experiencing. I would set up a program, and use my newfound health( I'd by "big-guns therapy then) to tell the world, and press for change.
I wish I could offer more, but thankfully there are others who have some experience with supplements, etc.
Me? I have the most experience at being plucked from the population by a bug almost too tiny to pinch.
I lay in my bed and ponder my childhood spent pledging allegance to a country that has since deserted so many good people.
What I can offer is that I understand. I hate it too, when I can muster up enough strength to move beyond apathy.
BUT...we're all HERE for you! Where else would we be? ....and we'll get through this together.
-------------------- "SEVEN LYME FACTS THAT COULD HAVE SAVED ME" VISIT ME AT:
Also search symptoms for parasites. I didn't make any progress until I started treating for parasites,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Thanks for the support, all. Really needed to vent.
I'll definitely look into the supplements and parasite treatments, and I think I may try to see a doctor a friend's friend recommended a little while ago when I get back from vacation (! so needed) next week. Not a LLMD, but it's something... I just feel like I need some guidance. Need to get back to life, ugh!
Posts: 20 | From Frederick, MD | Registered: Oct 2005
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posted
OH, one more thing! SEE the post where I put in links to pages I'd printed out to convince a non LLMD!
In a desperate situation, it may be all we have sometimes, and we can hope that a doc who sees the fraud and unbiased science, etc. which is what the pages reveal, would do the right thing.
Here's what I printed out for him and he extended the treatment time:
I want to share how those who came before me are already changing the tides for newly bitten/diagnosed Lyme patients.
Because of the persistence of good people, there was compelling evidence to support a treatment outside of IDSA guidelines.
Let's hope this is the beginning of a new trend. In my case, an LLMD was not an option, so I approached a good doctor who cares with the following.
It remains to be seen whether he will renew again, but it's a start.
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