posted
I sit here in pain, brain fog and sadness. When I finally learned I didn't have CFS which they couldn't cure for 14 years, I was thrilled to get the diagnosis of chronic lyme.
I really thought now there is a definitive diagnosis, and I can do something to heal. WRONG!
The abx is making things worse, and when I read about so many folks being on these "cures" for years and still herxing and suffering....what's the point?
Sorry, just having a bad day being made worse by the doxy.
I pray for all of us that a real cure is on the horizon. Posts: 867 | From PA | Registered: Jan 2006
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BostonLyme2005
Unregistered
posted
Hi,
I feel your pain, although I have been ill for less than 19 months, seven of which I have taken abx....
I do however knwo what you are experiencing to some degree....I suffer as well....
Just this morning I thought it would be nice to wash my car, and I did....
I washed it with the power jet hose at a car wash, just walk around and hold the hose, right? Should not be a big problem, right?
WRONG! I am now herxing an din pain, fatigued and suffering, but still do my thing...
I am taking Tetracycline, 1500 mgs a day...
Someone told me that Detox Tea from Yogi Teas helped them while they were herxing...
May want to give it a try.....Others will offer you some advice as well....
You will get better and better, just keep rolling with the punches....
posted
Thank you Rob. And I hope your pain goes away soon. Good for you for washing the car. At least you know you did something positive today!! Posts: 867 | From PA | Registered: Jan 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I have been sick since 1987 (I was 10)
So I hear ya on the long term sufferring thing.
For the first 13 years the best diagnosis they came up with it was stress, i was faking, and then they yelled at me telling me how it was my fault I was sick.
Finally lyme diagnosis... Oh hey I am not supposed to feel like S*** all the time..
Great fix me.
Well a few ducks, one amazing llmd, and five years into treatment I am still fairly sick. (disabled)
BUT I had alot of stupid complications (none of them were my llmds fault)
The good news is I am getting better..
There is progress every month for me.
I think that if we have a good dr. recovery is possible.
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
If you took the ABX and did not get worse, I'd worry. You have to kill bugs. Killing bugs results in toxicity and a herx reaction. Many times, feeling worse is required and a good sign. Taking an ABX and not seeing any worsening is often a sign it is not working.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Hi Tothepoorhouse,
I see that you joined Lymenet in January this year. How long have you been on antibiotics?
It takes time sometimes to even notice any difference, and often it gets worse before that......for months.
Hang in there.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
I was finally diagnosed by a new doc the day after Christmas of '05.
I think what is really getting me is not just the recent abx treatment I started right after Christmas, but the years of suffering I had before.
For 15 years I told the ducks I couldn't walk, I couldn't think, I was in pain almost all of the time and felt like I was dying.
I think I'm just so worn out physically, mentally and emotionally, the abx and herbs and detoxing just are making me hit rock bottom. And I didn't have far to fall.
Gosh, I'm sorry......whining doesn't help and I know we are all suffering. I'm just having a sad, frustrated and painful day.
Thanks for letting me vent. I know it will take time. I was as guilty as the mass of people who thought lyme was easily treated. That is, until I started the treatment.
There truly is no magic pill or bullet to help us. I'm sad about that too.
You all give me strength and understanding I don't seem to get anywhere else, even from myself. I am so grateful I found this community. I shall take strength from knowing I am not alone and to keep fighting. Posts: 867 | From PA | Registered: Jan 2006
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Feel the same here. I hate herxing. Ive been in treatment for 2 years. Some improvement. More days where Im in less pain.
However I still have some chronic conditions that hopefull will fade with treatment.
I added doxy last week, 4 days into it and I wanted to die. You cant explain the hopelessness and brain swollen feeling that you get when your herxing.
You really do want to die. I just had to take some benadryl and know that things will get bettter with time.
SO now what am I doing, im pulsing the doxy.
Posts: 2905 | From New England | Registered: Sep 2004
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quote:Originally posted by SForsgren: If you took the ABX and did not get worse, I'd worry. [/QB]
True. Hang in there! I've been sick a LONG time and now I have my life back. I'm able to do just about anything I want to.
The treatment is worth it. If you don't make much progress, keep researching and find out what may help.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
I was ill for 11 years before my Lyme diagnosis. It took almost a year before I saw significant improvement. I know that is a long time, but it happens!
Since then, I have had some ups and downs, but the overall progress has been improvement. When you have been ill a long time, not only do you have an infection, but lots of other things get thrown out of whack.
Those things have to be discovered and corrected, one by one, and it takes time. But it is completely worth it. Hang in there!
posted
It took me a long time, and finding a treatment that I could be consistent with to start feeling human again....
Also Its important to find a balance of both holistic and western meds when you have Lyme...
keep your gut and immune strengthened however you feel is the right way for you....
With the abx its a slow process..... lots of 2 steps forward 2 steps back... But all of a sudden all those steps forward add up and you find yourslef doing things you hadnt done in years without having to give any thought to it....
Hang in there....
Posts: 437 | Registered: Sep 2004
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Originally posted by SForsgren: If you took the ABX and did not get worse, I'd worry. [/QB]
Some people don't herx. I didn't in the first part of my treatment.
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I was sick for about a decade before I found my LLMD and started antibiotics.
When she prescribed the medicine, she cautioned me that I might feel worse before I felt better. That turned out to be an understatement. I felt a LOT worse for awhile, but I continued doing what I was going.
After 6 months, I was making significant progress, when I had some medical work done and started having new symptoms. It turned out to be a second tick illness, so I'm now taking a second antibiotic to treat that, as well.
Just today, almost 10 months into treatment, I had this feeling of definite light at the end of the tunnel. I'm a long way from well, but I'm hopeful about the progress I'm making.
Hope yo0u're able to find some relief soon
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
The abx doses I see people quoting seem huge to me. After 4 months, I've only worked my way up to 100 mg mino every other day, plus a little of another abx.
And that generates plenty enough herx to keep me in bed some days. I can't imagine how horrible, if not dangerous, the herxing must be if you don't ramp up.
Posts: 727 | From USA | Registered: Mar 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Hang in there.
It is a tough road...a long road but we will get there.
I think it is difficult when all our lives pre lyme we were told Lyme is not that big of a deal...just watch out for ticks and that bulls eye rash.
You dont know what you are in for, you can imagine it, but dont really know until you get your first herx.
I remember my LLMD saying to me, we are going slow with you because of your involvement. My first herx i thought i was going to be paralyzed...it was bad, very bad.
i was diagnosed the day after thanksgiving 2005. By the time i got this diagnosis, i had been to so many ducks...so many ER visits...i was emotionally spent.
Now that my head is back in the fight, i have noticed a bit of a difference. I can battle my pain better....due to a yeast scare, this is only my 2nd month of treatment and ive maintained abx even thru the herxs.
I back down to the lower dose when things get too bad...then increase a few days later.
Hang in there
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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