nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
It's another tough day and I was wondering if I am the only one out there feeling like this will never end. I have been infected nearly six years and treating four.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Uggggg my daughter's first symptoms appeared Nov 08 and we are still treating. Have had many good periods along with the bad but nonetheless we have only had 6 months in 3 years without abx.
Tough road for some
Debg
Posts: 499 | From Malta, NY | Registered: Dec 2008
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posted
I treated with only oral antibiotics (Medicare wouldn't authorize IV) for 1 year. I simply could not do it anymore.
Diverticulitis, near-ruptured appendix, severe great toe fungal infection, bed-ridden for the entire year. Enough was enough.
Been off them for one year and feel lots better.
Taking lots of supplements, which I could not live without.
Still in pain 24/7, to varying degrees, but acceptance of my "new life" rather than continuously searching for answers was half the battle for me.
At least I can eat without nausea, exercise by walking 3 times per week, laugh with my family, watch a great movie. So much better than when on antibiotics.
My total wellness is hindered due to EBV and CMV.
I feel for all the parents who must take care of a child with lyme. My prayers to all of you.
jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Hi Neff,
It's so hard to keep track of how long. I think it was when I signed on to this group that I was just beginning to learn about ehrlichia and lyme. So, since December 2007. I've been at this for 4 years. I'm not done. I just, hopefully, finished treating babs and am starting new protocol for bartonella.
I would suppose I'll be in treatment at least until summer is over if my stomach holds out. I don't know how long I've had this. Starting chasing my tail in Spring 2006, but I'm pretty sure I've had it a long, long time.
Both kids have it. One of them will be going off meds in one month, was diagnosed almost two years ago, has been with LLMD for 9 months.
Second kid? We've been chasing this down for two years this summer. She has been seeing the LLMD since September. She's got a long, long way to go. We started her with a neurologist since her symptoms coincided with multiple strep infections.
I have many days where I feel completely defeated. I have some days where I feel better than I can ever remember. All the other days? Somewhere in between.
You are not alone, though we all feel it at times.
Hang in there. Posts: 1374 | From Crazy Town | Registered: Dec 2007
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
I Agree with (back2game)> Been sick for about 4-5 years - took antibiotics for about 18 months.
I feel much better not taking the antibiotics. Still working on getting to 100% with NO drugs!!!
I'd say I'm 75 -80% better than 5 years ago.
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am glad everyone feels better. I feel badly for the children who are infected. For those with sick kids who are also sick themselves, I do not know how you manage your lives taking care of everything.
I am glad to know I am not the only one who has been treating as long as four years. I NEVER ever imagined it would take this long. I was sure I would be well in 4 to 6 months.
A year later I was diagnosed with bartonella and thought "oh, so that is it. Now I will be well in 6 months." Two years later it was babesia duncani - "the tough one" - and I expected another year.
I have quit abx three times and always relapsed badly. The first two times I managed for several months on herbs. Then I discovered I was being hit with another infection I did not know I had in addition to the borellia.
This last time I tried to cut back, I was down in weeks, not months. It was babesia quickly getting it's foot back in the door and borellia cysts activating.
I wasn't being completely stupid to quit too soon. I was having problems with the drugs. You can only take so much chemical abuse. I hope this new LLMD knows what she is doing. I am going to try to be optimistic - one more year.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Yes, it is very hard. But, if I don't get well, then my children, who have the same thing, and I'm pretty sure they got it from me, will never be instilled with the hope that they can get well.
Lord have Mercy.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Since 2003. Three bouts of remission. Iv always got me back. I was stupid to ever get off orals. Can't get back this time it's over 2 years now. Naturopath route, llmd working with. Naturopath appt tomorrow 2 see which way to go. How disheartening this is in hell. Keep goin. It has to happen.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
I have been treating for 16 months, I relapsed Babesia. My LLMD had me test my house for mold because he said something is supressing my immune system, and bingo. Mold.
I just got home from a 5 day trip (which I haven't felt so good in forever) to returning symptoms. We are 1/2 done with remediation. One more room to go. I hope this is my ticket.
I wanted to share this because I hope everyone looks into the mold thing, it can be a big factor.
Posts: 845 | From Northeast | Registered: May 2011
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posted
I've been sick since 2006, but was just diagnosed in Nov., and have only been in treatment for 2 months.
My husband was just diagnosed, and has been in treatment for 2 weeks.
My 2 yr old son was diagnosed mid-Dec and has been in treatment for about a month. (I completely relate, jackie51)
Thank God, my teenage daughter is healthy.
These past 2 months have been the longest 2 months of my life. To all of you who have been in treatment for years, I admire your strength and perseverance.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
When I was feeling down about treating so long I found the testimonials of recovery in the General Support section. That convinced me getting well is possible. We just have to keep trying to find what is holding us back - like the mold for you RC1.
I think my problem is not having a good LLMD. I live in the middle of no where and have to travel at least 1000 miles to find the nearest one. The last two were not very helpful. I felt I could have done a better job myself. I travel to see another one this coming week.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Goodness gracious nefferdun. I'm sorry that you are so far away from a good LLMD. Hopefully, your new one will have what it takes to get you well.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Good luck nefferdun.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Thanks. I just made our hotel reservations. It is nine hours there, two overnights and nine hours back. Not an easy trip when you are feeling sick and I do not sleep well away from home. The good thing is my son is going to school there and we can visit with him. I hope I feel well enough to have a little fun with him.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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