posted
I am so sorry for how you are feeling. I don't have Lyme myself, but my now-16 year old daughter went through stuff much like you are going through. It's MISERABLE. Those first months of treatment seemed like one long painful herx. Although the LLMD wanted us to keep hitting, HARD, I finally insisted that we had to dial back on the antibiotics, because she just couldn't take it.
Several things turned the tide for us. Have you been evaluated and/or treated for coinfections? Although my daughter tested negative for coinfections, our doc strongly suspected them, and decided to make a trial run at treating them. When she was treated for babesia, there seemed to be a slight improvement. A couple of months later, when he started treating her for bartonella, there was a HUGE IMPROVEMENT.
She's not done with this by any means, but she is in a much better place now. We all are. She can do things that bring her pleasure. She's also back to attending school, part-time. The whole family can now laugh, and relax, and feel hopeful about the future. I'm so grateful we made it through those horribly dark days and hours.
We are also working with a naturopath recommened by our LLMD, for detoxification. This is also helping a lot.
I know you're in a crummy situation. I hope you can hang on and find the help you need. Is there a Lyme support group in your area? As helpful as on-line conversation can be, sometimes you need that personal connection with somebody who's been there.
Wishing you health and peace,
Dorothy
Posts: 991 | From California | Registered: Feb 2006
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Cobweb
Unregistered
posted
read Success Stories.
Everyone here has been where you're at. Sometimes I think the only reason I'm still here is because I didn't kill myself.
But I am-it's been four years since being diagnosed. I may not ever get the level of functioning back that I had before-but things are still better than they were.
My family absolutely did not get it-when Mom, the mainstay of the family, could no longer live up to their expectations.
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Laurie,
I'm so sorry you are going through all this. Sadly, I see what you have written and feel that I could have written this at about my six month point of treatment.
I felt like I had totally lost my life and had no purpose since I surely wasn't contributing to this world in any way and was basically only a burden to my family.
When I would be writing these kinds of notes, I would be told to stick with the treatment and that it does get better. I have to admit that in my frame of mind, that didn't even register really since I wanted to feel better NOW...not in the future.
But they were right. It DOES get better but it sure doesn't feel like it's going to while you are going through these horrid times.
I've been on treatment for 18 months now and I went from wheel chair, to walker to cane and now I'm walking totally on my own other than with steps. I do still sometimes needs a boost to get back up. I'm still not driving, so I certainly understand the horror of being dependant on others to get you anywhere you want to go, but I honestly am getting close enough that I do think I'm going to venture out soon.
But I honestly couldn't see the light either and every time my doctor would change medications, it was like I was taking even more steps backwards and getting sicker and sicker.
No two people turn that corner to seeing the light at the end of the tunnel, but you are doing the best thing you can for yourself and we need to muster a huge dose of patience for ourselves.
Try to hang in there. We ALL relate. It's not fun, but it will be worth it in the end.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
When all else fails,live moment to moment. put one foot in front of the other. there IS no other way!!
I agree that co's should be thought of and re thought out.specially babs and the BIGGY bart!!
read somewhere that somebody 'thought' everybody had bart,,,so easy to transmit from person to person!!
Healthy people and SOME people are just better at fighting it off,,,but when sick,dominates BIG time!!
Start THERE and see what you find. ANY sxs????hopeful for you AND send that goofy husband over here for a NEW education!!!says--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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..if you can't find the light at the end of the tunnel.....we'll shine it a little brighter for you!!!
Don't you remember my I'm lost post.... go read it again....go to search...type in I'm lost...and you'll see it.....
I have so many days like you are having... Since I've had this for so long...I can honestly tell you it will get better....
until that day comes keep posting us.... ...and I'm so sorry you don't have that spouse support.....makes me crazy...
have a better day... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
Laurie,,,I cant offer any helpful information but can say that I am at exactly the same point as you and you are not alone. My worst (actually only) symptoms are the sick-flu feeling and extremely deep brain fog. These 2 symptoms are worse than any of the symptoms Ive had in the past 3 years before beginning treatment. I am worse than I have ever been and I know it is a herx since Ive taken 2 3 day breaks in the past 3 months of treatment and felt wonderful.
Ive been in this herx for over 3 months and it is NO fun. Also after starting Mepron I noticed my brain fog getting worse and worse to the point of derealization and extreme word blocking. I might ask my LLMD to switch me to malarone next appointment. It will get better for you, just hang in there
[ 20. May 2008, 11:53 PM: Message edited by: trish4 ]
Posts: 370 | From NJ | Registered: Dec 2007
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glad your appointment went well...and your on to a new plan..... hang in there...better days ahead!!
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Laurie,
Glad to get an update on you. It sounds like you have a really good LLMD and in very good hands.
The thing about lyme is that our emotions can be all over the place. At one point you don't know how to keep going and then the next, you get this piece of hope that will give you something to hold on to and keep going.
In the end, you will feel better and be glad you stuck with it, but dang, it's not a fun ride for ANY of us.
I know how thankful I've been to have this board to turn to when the going got rough since I knew people here REALLY REALLY understand.
It's one of those diseases that if someone doesn't have it, they can't BEGIN to really relate to what we are saying.
Please continue to keep us posted.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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I truly don't know where I would be without your support!!!
I have been off zith. and Mepron for 4 days and had about 2 hours today where I felt a little better.My pain,fog and nausea was minimal.
I went to the mall with my daughter for prom shoes and some gift certificates to thank some of the wonderful people who have helped me out these past few months.
Now I am in bad pain but at least not sick feeling.
I have to decide when to go back on the new course of abx.
Ughhhhhhhh...
Does anyone else have neuropathic, burning nerve pain?????????????????????????
trying to hang in there.... Thanks for the help!
Trish clean out your mailbox
LAurie
Now my pain is back in full force
Trish-clean out your mailbox!
Laurie
Posts: 256 | From long island, new york | Registered: Feb 2008
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