posted
I feel bad everyday. And then some days I feel so awful it's hard to believe. So if these days are herxes, shouldn't I feel some improvement after?
It's hard to keep going with this. I can't imagine things are ever going to change.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
| IP: Logged |
posted
Hang in there... hard to do at times, but, things will change.
Maybe take a look at what your treatment is though, and see if something else, another dr, another point of view of treatment maybe could change your course of what's done and how you feel?
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
| IP: Logged |
posted
I already changed once. I had one llmd for 5 months and now this one for 5 months. And I saw another I didn't like so never went back. So that's 3 points of view.
It's very hard to have faith even with an ILADS top dog.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
| IP: Logged |
posted
) yes, you have had your different points of view.
I was in treatment my first time for 2 solid years. I was in the ER and hospital more than home. IV and all combo's given.... had to have my gallbladder out because of rocephin... allergic to it with hives and vomiting... you name it, I had the complications to it.
But one day, I woke up good. It can happen. When, we don't know.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
| IP: Logged |
posted
switch it up, don't know your story - but appropriate buhner herbs may help in a supportive role w/abx. detox methods can improve the herxes and make it feel like you're not just treading water. hold on hope. it gets better.
my way of dealing with feelings of helplessness is to try new things. they usually help get up another rung on the ladder.
exercise has been great - a dr. b exercise program will help. you have to force yourself to do it at first though. the oxygenation of the blood kills the ketes, and it also helps clear the mind and clam the body which are equally as important.
-------------------- long road since 2010 abx got me over the hump diet, detox, and herbs have got me to heal Posts: 174 | From CT | Registered: Jan 2010
| IP: Logged |
posted
i can relate on my "good" days i never feel close to good... just not AS horrible.
i'm starting to believe i'm never going to get better either. i can't find a doctor who takes me seriously.
i'm basically bedridden, and i have been for over 2 years now (sick for over 7), so like you said, it's hard to imagine ever getting better.
if it's not one symptom it's another...
please hang in there... just know that you are not alone. my heart goes out to you!
Posts: 220 | From Kansas | Registered: Mar 2010
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Have you tried Low Dose Naltrexone? If not, have your doctor prescribe it for you! It boosts the immune system, or helps normalize it, which can help treatment work better.
www.lowdosenaltrexone.org for info, or see Dr. Singleton's book, "The Lyme Disease Solution" (3 pages on LDN)....or check out some of the recent Naltrexone threads here on Lymenet.
It helps a percentage of Lymies, and you won't know until you try. I feel my treatment turned a corner once I started it. I would recommend it for anyone not making progress.
Also, you just gotta keep switching things up with the antibiotics until something works.
I would also get a sleep study done if you have fatigue during the day that seems unreasonably bad. I am a slender, young female, so no one would have suspected apnea for me, but I have it. It is genetic. They didn't want to run the sleep study, but once they did, they were glad they checked.
Those are my little pearls of wisdom for those not making progress. Good luck!!!!
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
No advice because I'm right there with you. I really do hope it gets better one day...but the end is no where in sight for me.
posted
I've read and heard about LDN and it seemed promising to me. However, I asked my llmd about it last visit and he said he's never seen it help anyone. I have an immune deficiency and might have to get IVIG for that. I wonder about LDN vs IVIG. And obviously having an immune deficiency is hampering progress.
My sleepiness tends to have to do with which drugs I'm on. I'm not as sleepy in the daytime on my current protocol. I have more of the malaise/fatigue/soreness thing--I can quickly and easily do too much and have to lie down and even then I don't FEEL like I'm lying down. I'll feel like my feet are being beaten with invisible baseball bats and my body feels like it's having a panic attack--like every cell is screaming.
My llmd holds back on IV. I'm wondering if I shouldn't demand IV tigecycline. Every option is icky as you all know.
I have dreams that I'm sobbing hysterically in disbelief that this is happening. I guess my subconscious can't accept it even though I deal with it ok in waking life.
Sorry so many others feel the way I do. Eeeeeek.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
sickpuppy,
Have you tried Tindamax yet? I think it was LymeMD that says he sees it help people with fibro-type symptoms. Though you would have to check his blog to be sure.
It might have been that he said he saw Malarone help for fibro-like symptoms. Can't recall. And he was speculating the Malarone was treating a "babesia-like" infection.
So those are two things to keep in mind. Good luck.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
posted
No Hoos I haven't been given tindamax. Here's the list (not the combos, just everything I ever took): Mino Cefdinir Zith Doxy tetracycline diflucan mepron very short time on Rifampin--like a week before I had to stop
All oral.
Heaven help me.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
| IP: Logged |
Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
It took me two years of daily oral (and prior IV Rocephin) to get over feeling like complete crap everyday. I still don't feel "good", but it's not like it was, even after being recently re-bitten.
Hang in there!
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
| IP: Logged |
posted
I feel like I tried hard to do some of the detoxing things people talk about here like chlorella, charcoal, epsom salt/baking soda baths, various supplements, lemon water, quercetin. I felt no benefits. Also, I'm not down with a coffee enema--it makes no sense to me and caffeine sends me into a tizzy. Yikes. I guess I just don't get it--the detoxing thing. I read about it and I don't get it.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Embarrassed]](redface.gif)
) yes, you have had your different points of view. ![[Frown]](frown.gif)
on my "good" days i never feel close to good... just not AS horrible. 
Printer-friendly view of this topic