posted
Been on abx for 1 year. Symptoms of neuro LD wax & wane but still there every day.
Have read this site & numerous other ones daily for 10 months. Read every medical report I could find from neurology sites, microbiology sites, LD sites, pub med articles, journal articles etc.
You name it, I have read it & shared it with my LLMD. I even had 1 article translated from German to English b/c the pub med review sounded promising. And the verdict is no one understands what LD does in the body and/or how to treat it
Imo, once LD gets entrenched in your body (say 6 weeks) w/o abx, LLMD's just don't know what to do. Seems no one understands the mechanism for persistance of LD.
Treatment protocols are hit & miss b/c nothing works long term. I will have this bug forever. It will dominate & consume my life. I hate it. But thats how I see it.
Posts: 213 | From ohio | Registered: Jul 2006
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ByronSBell 2007
Unregistered
posted
how loing were you sick pior to getting treatment?
What is your treatment right now?
(97% of all of my LLMD's patients get well or get alot better)
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
I hope some of the folks who have been treated longer than I come and answer your post. Lots of stories here on lymenet of folks getting better after one, two, three or more years of treatment.
'Getting better' means regaining quality of life and functional abilities; not necessarily spirochete-free life.
I have been treated for nine months, and while making progress in some ways, have been concerned too about the long-term prognosis. We could both use some optimism.
Posts: 2557 | From home | Registered: Aug 2006
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posted
I have to disagree, too. It sounds like you may have the wrong LLMD, or maybe just the wrong protocol. Maybe there are coinfections that have been missed.
I have been being treated for three months and have gone from 15% to 35%. I'm no where near 100%, but I do have the HOPE of reaching it seeing the progress I am making.
My LLMD is very aggressive in his treatment. I'm on a lot of meds, three of them are antibiotics PLUS the babesia treatment. It's helping.
I hope something can restore your hope. I do know I've read about people here who take a long time to see any improvement. I consider myself very lucky in that regard.
BTW, I got bitten back in 1972, didn't know it was Lyme until last December. MOST of this time I have been healthy, but have had mystery illnesses and health issues.
I had three other flare-ups that I would call serious over the past 35 years. I guess that's ultimately what gives me hope ... the borrelia has been in my body for a long time, yet I felt GREAT. I can get there again.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I have to agree with you. I think you can knock it down with antibiotics and it can go into remission, but it's still there and will come out again at some point...
Posts: 340 | From Ohio | Registered: Oct 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I beg to differ. It did take me 3 years of TX But I did get better.
It seems after 20 years I will have the "bugs" forever but remmission is very real.
I went a total of the first 7 years mis-diagnosised & no treatment at all.
My personal record for remmision is 9 years at 80% better.
So this is what I strive for again. Not there yet but major improvements from 3 years ago. This is how I measure my improvemets ~ baby steps.
I hope you will not give up. It can take longer than one would think but it will happen.
hang in there & never give up & never give in
Its all so worth it
Blessings Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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this bug clan can cause anyone to feel as though you will never get better----- but--- there are too many people who have improved and or completely back to baseline.
bv-- have you shared your protocol, dosing, supplements with the board - may help to hear some of the success stories and what they are using.
It has been 2 years since my symptoms started and I have improved - - got my brain back - about 80% - struggling with bartonella and babesia- but off disability and can work part time - Miracles happen- (Still would like to stay home and bake)
Keep on keepin on - don't stop
get well mags
Posts: 259 | From California | Registered: Mar 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
BV- I agree with some of what you said about you not getting rid of it, and having it for life.
I feel you will have the bacteria for life but your body will be able to keep it in line.
Will your life be the same as it once was, possibly, but from my experience my life is not what it was and it wont ever be the same again. Ive been to the greatest depths within myself and back again. I was very bad off but i am better then I once was.
As one dr(non llmd)r said to me recently you might not get the life back as you once knew it, but you will get a life back.
Have you done anything to detox, you could be very toxic.
I stopped abx, my body could not tolerate the herx and horrid yeast, my immune was shot. Im working on diet, herbals, and physical therapy now. Im one of the rare people that feel better off the abx.
Parts of my body are slowly healing, but its taking time.
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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breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
I've been at this since 98...My first year was miserable...I had a very entrenched lyme infection, herxed like crazy, felt miserable, was always exhausted and certainly went through dark nights of the soul on this one.
I could hardly walk or talk and would forget to pick my own children up from school...we had a dear special ed teacher for my son who would call me twenty minutes before school was out so I would get up , get some Starbucks and make it there in time.
Finally I was able to have IV, for nine months...rotten herx process, but when I began to feel better, it was a very measurable better...much better.
Then we discovered that I had babesia WA 1...a brand spanking new version of babesia. The test for it was in experimental stages. I was one of the first three diagnosed with it.
Treated the babs. and my world improved by leaps and bounds.
So, yes, we do get better, but it can be a miserable road in the process...We all feel like Job at one time of anther. I've learned to appreciate my blessings and keep striving for healing.
I've been reinfected once, on a walk with our puppy, who was also infected. She's doing great now and I'm greatly improved again too.
SO there is hope. You are not alone. We do get better...It's simply a no fun process...
Will we ever be free of this? I have no idea. After my husband's battle with esophageal cancer for the last two years, a cancer that most people die of in three months, I realize that I am more fortunate than I thought. He has beaten the beast called cancer...HE is the miracle man...I am getting better. The world keeps spinning and my little corner of it is better. Not what I had ever dreamed it would be, but it is my life and I have to make it better, with my choices, the ones I can make for myself..
Carol Ann
Posts: 1062 | From CA USA | Registered: Jan 2001
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I disagree with this statement.
i don't believe anyone got better
I do because there have been people that get better. Some cured ? Some just feeling better.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
Hi Tree!
Disagree with what? That we can't get rid of all of this bug stuff , that we can, or what...I'm just confused...Not a challenge, just asking....Feel free to disagree with me...I'm just not clear if it's my ideas or something else.
Carol Ann
Posts: 1062 | From CA USA | Registered: Jan 2001
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
I disagree, too (with the title of the topic).
Posts: 1111 | From Colorado | Registered: Oct 2006
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
I've been in treatment for four years. After a bout a year it was pretty much beaten back and has stayed that way except for occasional bad days. Interestingly, I am still getting subtle improvements in cognitive funtion.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
your negative attitude isnt going to help anything. if you dont believe you are going to better you probably wont. btw, isnt there a moderator somewhere that can minimize these negative posts. they dont help anyone, much less yourself. people come here for hope and information.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
I believe I will get better. My symptoms started in 1997. I went for 7 years with out a dr. that understod Lyme.
I've been in treatment with a LLMD for 2 1/2 years. Some times I feel I will never get better; But I rember feelings arn't facts!!
Very slowly I am getting better. I believe that once I get rid of this bug, and take better care of me than I used to. Like eating better, getting proper rest and keeping my stress down. Then my imune system will take over.
I had great news at my last visit with my LLMD. My blood work came back normal. First time in 10 years. Sed rate was only 16. Used to be in the 20s or 30s. Rhmitoid Arthritis, came back negitive. I am healing even though I still have a ways to go. I get bad days but they only last for 24 - 48 hours.
When I have a hard time doing my normal jobs, I just try harder.
Hang in there it DOES GET BETTER. Just keep beleiving it will. When times get get hard just do the next right thing.
posted
Don't think we have the stats to say definitively what the prognosis is. If the govt wasn't making such a botch of this disease, we would have better info, and it would get published, unlike now.
Attitude does not affect whether people get better or not, except from the point of view that if they stay positive, they may continue to seek treatment for a longer time, which will improve most people. Please do not blame the victim with the attitude thing.
If you don't want to see all sides of a question, and think this is negative and shouldn't be allowed on the forum.....well, censorship never helps people find the truth, whatever it is. Even if we don't like the truth. Please just scroll on by posts that offend you. This person has a right to discuss the question.
There are a lot of different outcomes with lyme, and treatment helps most people. I agree that late catch cases may not ever be free of the ketes, but some people do achieve long remissions, and if it lasts forever, that is the same as a cure for them. I just wish I thought that could be achieved in my case.
Posts: 8430 | From Not available | Registered: Oct 2000
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quote:Originally posted by djf2005: your negative attitude isnt going to help anything. if you dont believe you are going to better you probably wont. btw, isnt there a moderator somewhere that can minimize these negative posts. they dont help anyone, much less yourself. people come here for hope and information.
I have to disagree with you here. People come here to vent their disappointments, ask questions, and be encouraged by the few people who TRULY understand what this thing is all about.
You've not been here very long, so I would ask that you abstain from sweeping statements about "what this board is here for".
Let's try to be understanding of the discouragement here and help the original poster out of the hole, not throw more dirt on their head.
-------------------- Getting older is when we would rather not have a good time than have to get over it. - Oscar Wilde Posts: 386 | From Radnor, PA - where the ticks run free | Registered: May 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I think it is important to have the honesty to know that people are having hard times- and it makes it THAT much nicer when those same people get well!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I am at 99.9% and have been for 6+ years. Life is wonderful, the best it has ever been, really.
I am pain free except for 1-3 minutes a month I get a twinge in my left knee premenstrually which has become nothing more than a faint ache the last few months...
Other than that I am symptom free and life is great!!!
It is a long road and can be disheartening!!!
I was on orals for a year with almost no change.
It was not until month 7 of IV Rocephin that things changed-
The only time I don't like negative posts is when I suspect they are not real but sock puppet posts- yours does not feel like that- you feel real-
EVERYONE I have seen who has
A. gotten a good LLMD B. done longterm abx therapy
has gotten well/ substantially better without exception- Take care & best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
say what you like, negativity isnt going to help anything. i apologize, no offense meant. trust me, i know. i have given into hopelessness as well, but i know from experience it doesnt help anything. you ARE going to get better, as we all are. tough love says to be positive, i know how it can be though.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
bv, there is a grieving process that people go through when they lose something in their life. That includes good health. You are in the angry and frustrated stage and you need to get past that and use your energy to figure out how you are going to win this war.
Many of us can relate. Sorry you going through this process. There will be a cure someday. I've got to believe. Don't give up.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by djf2005: btw, isnt there a moderator somewhere that can minimize these negative posts.
they dont help anyone, much less yourself.
people come here for hope and information.
Moderator for a negative post geez there voicing there opinion thats all you dont need a Moderator for that.
And as far as it helping someone as you said in the last part.
You answered it yourself. you said {{{people come here for hope and information.}}}
Thats what this person is here for Hope&Information.
Not everyone gets it the same way
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
quote: "Imo, once LD gets entrenched in your body (say 6 weeks) w/o abx, LLMD's just don't know what to do. Seems no one understands the mechanism for persistance of LD"
Are you actually seeing a LLMD who has experience? Seems that if you're bringing articles to your doctor, you may feel he/she doesn't have alot of experience with lyme.
If I mention anything I've read to my llmd, he can fill me in on details of the article and it's background. Even the researcher behind the article.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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quote:Originally posted by djf2005: your negative attitude isnt going to help anything. if you dont believe you are going to better you probably wont. btw, isnt there a moderator somewhere that can minimize these negative posts. they dont help anyone, much less yourself. people come here for hope and information.
Is hope compulsory to post here? how much is politically correct hope worth to any of us around here?
I think having to pretend that you feel positive when you don't feel positive is going to be a helluva lot worse for the writer and the reader.
If people feel bad and pessimistic I want them to feel authorised to express how they feel here. Where else are they going to say they feel they will never get better if not here? Who else is going to understand how they feel if not us?
Nelly
Posts: 416 | From france | Registered: Oct 2001
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All
Look at it this way-- there is 11000 lyme net users sense the LN started - total --
From what I see there is about 2 to 3 thousand Active users--maybe less
The Other folks went Somewhere - Jay -
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
hear, hear. Most of them probably went on to getting better and "having a life". There are a few who are relatively new to remission (2-5 years) who still come post and support all of us here, but I'm pretty sure that as you get better you'll stop posting/reading as often. This gives one the impression that everyone on Lymenet is sick, but the forum doesn't reflect the actual Lyme-affected population.
I believe this partially from talks with my LLMD, who sees a LOT of people get their lives back completely, and thinks that those for whom it's easy just never connect with us online as they just take their meds and get on with their lives. I also know a couple of people in that boat, so I can see how the forums would give one the false impression that no one gets better. It's not true...
-------------------- Symptom Free!!! Thank you all!!!!
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
hear, hear. Most of them probably went on to getting better and "having a life". There are a few who are relatively new to remission (2-5 years) who still come post and support all of us here, but I'm pretty sure that as you get better you'll stop posting/reading as often. This gives one the impression that everyone on Lymenet is perpetually sick and no one is an 'ex-Lymie', but the forum doesn't reflect the actual Lyme-affected population.
I believe this partially from talks with my LLMD, who sees a LOT of people get their lives back completely, and thinks that those for whom it's easy just never connect with us online as they just take their meds and get on with their lives. I also know a couple of people in that boat, so I can see how the forums would give one the false impression that no one gets better. It's not true...
-------------------- Symptom Free!!! Thank you all!!!!
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I disagree with the statement, too.
I went for 9 years undx. At the time I started treatment, I ranked my health at about 18% of capacity.
My first year of treatment was hellish, with herxing, a trip to the ER, seizures, numbness. Countless cognitive problems. It was impossible for me to fully straighten out my right leg. And the pain was excruciating.
Now, after being in treatment for about 18 months, I'm at about 80% of capacity and I continue to see improvements.
I've gone back to work fulltime in a very demanding position.
Whether the virus leaves me or not, I believe I'm going to be able to restore my life!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
You are NOT negative, just being real.
You are only saying what you feel, and it is good to read that others got better. Read and read about the ones that
got better. Find someone like you, that has had the illness as long as you and your symptoms,
then you can see what they did to get better. And try this way.
Good luck, and vent is good.
GET IT OUT! is good. Keeps one sane.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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posted
I was once totally there too. But after spending two years lurking on this board I have seen that if you A. get a Quality LLMD B. get or have access to long term ABX(I've been on Mepron, IV Rocephin & Alinia for over a year and I'm just starting to really feel better!!!) C. address co-infections D. Fix the hormones, take your supplements and and heal the body.
you will make at least a 90% return if not close back to 100 once you detox and take the CSM to clear out the dead lymie toxins. Search the boards most people who have followed those guidelines have posted that they DID make a recovery.
-------------------- Current taking: Bactrim DS 3x Daily, Doxy 400mg 1x Daily, Rifampin 450mg (ramping up to 600mg) 1x Daily, Compounded Nystatin 150MU Caps 1x Daily, Plus supplements to come later. Posts: 60 | From California | Registered: Apr 2007
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posted
Search on success stories to read about those who have gotten better and moved on.
Posts: 925 | From California | Registered: Sep 2004
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
A whole bunch of us have achieved a near fully functional state even if not the magical '100%'.
We've also attained a sort of paranoia where every ache or pain is an 'uh oh'.
But from my experience, an 'uh oh' if ignored can come back to bite you big time.
other than that life is pretty much OK punctuated by a few handfuls of pills now and then.
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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