bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
So..I recently heard that a very prominent LLMD says we all need to find our "new normal". I'm hearing it second hand..so take it with a grain of salt.
What are your thougths on this statement?
Personally I don't like it. I believe I deserve to get back to a full 100% and that I shouldn't settle with 80% as my "new normal."
Do you feel we have to settle for a "new normal", or keep pushing for a COMPLETE AND TOTAL recovery??
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
Wow!!! I really hope I don't have to settle for 80%
With my current Dr. I know that I will not receive treatment till I'm back to 100%. There is no way. He is already talking about stopping treatment. I got him to concede to just taking a break because of GI issues (yeast).
It will be interesting to see what everyone else thinks.
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
For me...I will never stop trying for 100%. I know it's attainable...I've been there once...for two fabulous months. I know mine are active infections due to my response to treatments and things like continued low-grade fevers.
One thing is for certain. If we stop trying for 100% I can guarentee with 100% certainty we will never get there. Never give up...never.
Posts: 1104 | From N.California | Registered: Jan 2008
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
BTW- I like to think of my "new normal" as just temporary. It's all in how you perceive it.
Posts: 1104 | From N.California | Registered: Jan 2008
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posted
I did not settle for a new normal. I feel 100% better.
I was sick for YEARS. I do still have some damage to my gut. Before Lyme I used to live on half raw fruit and veggies and juice. My gut is mostly healed and I can eat about anything, but not a salad meal. I need at least half cooked food each meal. I have not been comfortable going back to as much raw food as I used to eat. This is still getting better and as time goes on I can eat more salads but I still tend to prefer cooked food. This is a vast improvement from not being able to eat veggies unless they were very over-cooked.
I also had a frozen shoulder. That shoulder is unfreezing now. I am regaining more range of motion as the weeks pass.
However, I *feel* completely healthy. I don't consider having to heal my gut more or wait for this shoulder to unfreeze as being less than 100% healthy. I am 100% functional and lead a more active lifestyle than most people my age (48).
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
If you're 95% functional as you stated many times, that's a pretty good place to be (most would kill for). If I was 95%, I'd BE THRILLED. As long as that 95% truly is 95% if you know what I mean. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
First...a disclaimer. I need to update my signature because I doont think I'm at 95%. I thought I was, but looking back I wasn't. I'd say I'm close to 90 on average with some days more and some less. Lately less.
Regardless, I don't like the comment implying I should be thrilled with where I am since "many would kill for it." Yes, I do live a mostly normal life now. I'm thankful for that given where I started out. but I'm definitely still sick and have some issues. I'm not going to settle for that. We all deserve 100%. Period.
I'm not trying to pick on you personally, seek. I've heard the comment from many others and don't like it.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
I mentioned to my LLMD at my last appointment that I was trying to get used to my "new normal". He said whenever he hears patents say that they usually get much better in the coming months. I'm not sure exactly what he meant.
I'm MUCH better than I was and much better than most but nowhere near 100%.
I'm running every other day, lifting weights, and doing hot yoga three days a week. I work full time and have a small child to care for. But I still have horrible tooth and face pain, muscle twitching and cervical radiculitis.
So for now I'm getting used to my new normal. I'm not going to let Lyme stop me from living my life. Maybe someday I'll get back to 100%. But I was also told by a LL neurologist that my body has a scar that takes a long time to heal. I believe it. There are days when I think the infection is gone and my body is busy healing and recovering.
bcb-I've read a lot of your posts and I think we are at the same place in treatment. Feeling much better but not there yet. Keep juicing, I really believe it can aid in the healing process. It just takes a LONG time.
Posts: 132 | From Somewhere | Registered: Jan 2011
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
if this is my new normal, I'd rather not be here.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
I live by that statement. I think it is a coping mechanism for me. As you all know, one of the most difficult aspects of this illness is losing the life you used to live. I am young (36) and have a young family. The last year and a half I have been completely disabled, unable to leave my house most days.
Determining and accepting my "new set of normals" has been instrumental in my ability to accept my new life, and to emotionally come to terms with what this illness has done to my life. It absolutely does not mean that I have given up, or that I am not working my butt off to get healthy. It just means that today, I accept where I am and what I am able to do (or not do).
I spent a lot of time and energy mourning the loss of my old life. For a long time me and my family were devastated. It was so hard on all of us that I could no longer do the things I wanted to do. Its the little things, like going to the park, taking trips, even going to the grocery store and getting chores done. It was also the big things, like not being able to work.
Now I have been able to accept the things I cannot do. I am working very hard at being able to regain my old life. But for now, I have my new set of normals. It has become easier on my whole family as well. It is less shocking, less disruptive now.
I do not know what this doctor meant exactly, because I did not hear the entire story but this is how I have incorporated it into my life.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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posted
searchingfortruth- I could have written this! I am still working on accepting the things i cannot do and mourning the life I used to have...
I would like to think that I have hope but I have been treating for 4 years and I definitely feel that I have permanent neurological damage. I feel like my body is breaking down the longer I am on abx. and pain medication.
Yes the new normal is not good enough but I have no choice. This is the only life I have and I try to make the best of it which isn't always easy.
L
Posts: 256 | From long island, new york | Registered: Feb 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I do not think i could ever return to pre- lyme days because I have gotten so much older, It is sad that a big chunk of my life is gone and even if I do fully recover, all of the time will never be given back to me. It is like going to sleep at a certain age and waking up ten years later.
I am doing well, or so I like to tell myself, but when I see this as my new normal, I am in a state of denial that I am still sick. My sub conscious mind wants so much to be well that i ignore the lingering symptoms accepting them as "normal".
I just hope when/if I am in remission, my mind is more functional than it has been. That is what I miss the most.
-------------------- 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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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
THanks Runner. I needed that.
I'm just at a point where i'm frustrated. I can get through the day fine. I'm 36, work a full time, stressful job. Have a beautiful family with a wife and 2 small children. we have fun on weekends (usually).
I feel "good enough" most days, but still have off days every now and then when I just want to do nothing but nap. They are becoming rarer...but there.
On my "good enough" days, I still have symptoms to deal with...and I'm a bit frustrated because it seems like I've gone backwards a bit. Maybe it is side effects from all of the meds I"m on. I'm on high doses of a lot of stuff. Maybe it is yeast.
Or it could be lyme and co. My biggest concerns now are that my left side of my face feels "odd" at times. Like it wants to twitch, yet it doesn't. It isn't tingly..but I can feel the nerves for some reason. My TMJ is also a bit stiff.
I just restarted doxy 2 days ago and my brain fog is a bit worse the last days (usually gone.) So this either means it is hitting it, or else I'm relapsing.
Sigh.
I am fine with my "new normal" for now under the stipulation that it is temporary and I will be back to "100% Normal" in the future. Hopefully.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Many people reach 50% very fast with whichever treatment they choose. From 50 -80% takes a bit longer and more difficult treatments. But still, many reach that point, fortunately.
When you reach 80%, first thank your life and body for that. You are so fortunate not to live in hell anymore!!
From 80-95%, it will take YOU much more time and trials, and different treatments, many you never heard of, and never thought you needed. It will be less of a lyme disease treatment and a more holistic treatment.
It's is harder to find out what exact treatments you need as fighting bacteria/ pathogens makes less sense at that point.
If your body has not got permanent damage, you can go further improving, for sure. I never settled for the 90 % either. I wanted to be back to my 100%!
The last 5% is the hardest of all. Hardest, longest, trickiest.
When you finally reach back to 100%, and are treatment free, symptom free, you still didn't finish everything!!
You can still relapse. For me, that was the TRICKIEST part. How not to relapse anymore??
I am still on this phase, now for 2.5 years. Infrared treatment (photon treatment) helped me there, I truly believe. Like for Sixgkids!
But I am not sure I won't fall sick again at the next tick bite. I got 4 bites this summer, so far, so good...
Now that I reached 100% for lyme, passed my 1 year remission period I was aiming at, now I am trying to solve other health problems I had previous to lyme, that is to say:
- candida infections that come and go in winter months, colder extremities in winter and the few remaining food allergies. I'm still on heavy metal detox on and off, I still have some teeth to treat, acupuncture to do, but lyme is past.
Posts: 6199 | From Brussels | Registered: Oct 2007
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Brussels, what is Infrared????I seems so scarry you are where you got so many bits.. You have got to be feeling strong..
My Buggy-bug started over 5 years ago.
sick at 49 ,sat on couch Thankgiving, by myself, sick as a dog, turning 50 and thought what in Gods name is going on..
It took months to get even a little break through with abx's and pain meds,. I fought , knocked and tried what came across my way ,that made any sense. What I don't understand are the couple of times when help seemed to be there and it failed in one way or other. There were a couple of days when I really just felt back,and several hours later,it was just gone.
I know not my post/don't want it to be . I want 100% but would take 70% now in a heart beat.For now Just where oh where can it be???????
posted
I am pushing for 100%, I am at 80% most days. It would be easier to sometimes say that this is my new normal and I have to accept it, but I don't want to.
I have hope that my body will continue to heal and I can reach 100%. I was sick for a long time (at least 13 years) before diagnosis and treatment. I have been treating for two years.
But I agree with Searching4truth as well, I had to accept a new normal to be able to cope everyday. This is a very hard illness to cope with- I get depressed that I can't do the things I used to do. That I set my life up to be outdoors and active and now I am limited.
Accepting a "new normal" for right now has helped me to cope and hopefully to keep improving in my treatment.
Posts: 233 | From Hudson Valley | Registered: Jun 2010
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
sorry for the pessimism,but this has taken literally my person. Physically I can deal with the neck that wont move, ...I can go on, but not as much as this has affected my thinking. I was spontaneous, automatic, this has taken the me out of me and that is disheartening. I had almost complete remission in 2009, I can't imagine a complete turn around in a short time. One day at a time. I went accepting my 95% in 2009 to 0% with the inside brain. I can live with not knowing words, saying them backwards, vision screwed, but when it comes to family and friends recognition and have sense of self, I cn't accept that and I have to now, not much choice. I push to do everything that was automatic with me, complained doing it, or loved it, but my spirit was there. Hard to live without a spirit. Pity party? sorry if it came out that way, but there's someone in there that cant correspond the brain with the heart and it gets me p______. God knows our hearts and it can't go on forever. Physical 50%, mind stuff maybe 10. I'll take familiarity back in a heartbeat and sleep sound waking up as me. Sorry, guess pity party. Just restarted treatment for bart last week. Might I add, I'm eternally grateful dr. J. Got my son back from a 3 year bout with this stuff, eyes, knees, memory. I'm grateful I was a mom then in the true sense of the word. Todsy, is n automated machine, what a difference a year makes. Pray for those who are in pain physical and mental, kids are the hardest. Feel good.
posted
The "new normal" is what our family has been dealing with for many, many years. Our teenage son has been ill for 11 years now (from age 8 onward), so we have learned to adapt and change our lifestyle.
I always tell people what's "normal" for you is not "normal" for us. I guess an explanation is warranted.
For example: we cannot go to church as a family, because my son has chronic pain and cannot sit on the hard pews. So... he watches services at home on the tv (if he's not sleeping) and the rest of us go to church. Our son is still with us, just not physically.
Because of the chronic pain, he hurts more to be touched on his chest, sides, back and arms so we hug his head instead (we've been doing this for five years now).
He does not sleep normally or restfully, i.e. go to bed at night and wake up in the morning. It's all over the place - going to sleep in the morning and waking up in the evening, sleeping in the afternoon and waking in the night, sometimes staying up for 24 hours or so then sleeping 12 hours, etc.
In spite of all of this, we are fighting every step of the way, trying different things to get back to 100% - where we were before. For the past 5 years he has been undergoing treatment for Lyme and co-infections and there have been improvements, thank God.
Right now his is receiving treatment to boost his immune system, because Lyme and co-infections have caused an auto-immune condition.
Yes, it's very sad to see our son's best years taken away from him. It's hard to see his classmates go on with their lives while his is stuck in limbo. His short-term memory problems have wreaked havoc with his schooling (he was a 'High Honors' student before), but we take it one day at a time and do what we can.
We find our greatest strength in God's help: "I can do all things through Christ, Who strengthens me" (Phil 4:13).
We hope and pray to return to the place where all of this will be behind us, and we can continue to live the life God planned for us.
Posts: 8981 | From Illinois | Registered: May 2006
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posted
I can so relate to you HopingAndPraying as my dd got sick at an age where at this point, she doesn't remember what normal, healthy means--all she has is what she is living right now--the pain, anxiety, fatigue is her normal.
Her young childhood has been spent in this illness. She is a teenager now and has also watched as her friends have gone on to proms and Friday movie nights, etc, while she remains at home.
Fortunately, she seems to be turning the corner now, and if only we could get rid of the intrusive thoughts that cause her anxiety (herx from babs treatment?), she would be close to 90%! She never had these anxiety issues before, so hopefully it isn't a relapse but a herx.
I won't give up until she is 100%, but I don't think anymore that the abx are what is going to get her there--my attention now is concentrating on immune support through herbals and either the bionic or PE1.
Posts: 648 | From northeast | Registered: Feb 2009
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posted
Hey you know what, I'll take 90 % with no prob. As long as I knock this stuff down enough to have more enjoyment and not have it kill me! I'm not looking to be the old me. A new me a touch slower! ;-)
Posts: 267 | From South | Registered: Oct 2011
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Thank God there is you.. I know it's a hideous illness. But work at it with whatever you have ... Easy for me to say...,,,in five minutes I could be in tears...It judst messes with evrything..Are you going to try to watch the live feed
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
BCB--hang in there. I know I am much better now than I was 6 months ago, even better than I was a year ago. I'm better now than I was 2 months ago.
I think it takes a while for all the supplements to work. There is also the pieces of the puzzle that we need to figure out, whether it is getting enough exercise, reducing EMF, dental repair work, or whatever the case may be for you.
Keep going, you will get there.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
From where I am now I will take 80% any day! Hell I'll take 50%!
I have been sick and in pain for SOOO LONG... I don't think I will recognize "normal" if it kicks me in the butt.
So one day at a time... I'm grateful I am still breathing and I'm not depressed today. Simple goals.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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James1979
Unregistered
posted
I don't think I've ever been normal.
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
People do get better!! Just see how people come and go away in this board!
Maybe not 100%, but close to, and they forget LN and go on living!!
Just think of something: you are already fortunate to know what 'normal' is. Some people, born with lyme, don't even know what is to be normal, when to stop treating etc...
I guess, you got to keep trying, and never give up, but DON'T spend all your money on the first treatment. No treatment is sure enough for you to spend ALL your savings at once! At least, that is my opinion.
Know that you will go for the long run, I mean, the ones who are chronic and who want to get to 90% or more. It is a long run, so we go slow, and we think in terms of months and years, not days.
My little one was 1 year old first time she fell sick with lyme. Then every year, she would fall sick again. It would take longer to get her well every new bite...
Until she fell chronically ill. She knew she was not well, the whole time. Even at so small age.
It's a big suffering for such small kids.
It can be hideous for all of us, but it breaks the heart to see kids suffering.
whatever months she lost, years... well, these years are GONE, there's nothing left from her disease except from compassion to other suffering creatures.
My lost years, they are also past. It's amazing how time heals. It looks as simple as that.
If I fall sick again, well I think I will forget about my good years without lyme!!! That's human nature! ----------
James is an exception. He was never normal and never will be!
Posts: 6199 | From Brussels | Registered: Oct 2007
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Thanks Brussels. I needed that. I was just starting to believe, really believe I just cracked and this is what I'm left with. I know what life s, spirit is, feeling of self is, reality is, I've had it for life, stress can do anything, bad mix with Lyme. Thanks for pointing that out. Taking my son for bloodwork next week. It's been off since he was treated and stopped 4 years ago. He shows no symptoms, I don't treat. Time goes by, no matter what,
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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James1979
Unregistered
posted
quote:Originally posted by Brussels: James is an exception. He was never normal and never will be!
Wait a minute... are you hitting on me? Because you know, Brussels, I'm really not looking for any new relationships right now. It's just a sensitive time in my�life, you�know what I'm saying? I just don't think it would work out between the two of us. I mean, you're practically on the other side of the world, so many hundreds of miles away. I just don't see a future in it.
I hope you can understand what I'm trying to say, and I hope we can continue to remain friends.
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I know I am in the minority, but I agree with the LLMD that says we have to accept our new normal. I have never seen anyone that gets back to 100%. They all have things they are still dealing with whether they are willing to admit it or not. They usually attribute their symptoms to something other than a result of this infection.
Those who say they know someone who is 100% normal don't live in that persons shoes.
I will continue to say that it is dangerous to tell people that they can get back to 100% and those people stay on abx, waiting for that to happen. Even the LLMD's are now willing to admit that it doesn't happen.
quote:Originally posted by lululymemom: I know I am in the minority, but I agree with the LLMD that says we have to accept our new normal. I have never seen anyone that gets back to 100%. They all have things they are still dealing with whether they are willing to admit it or not. They usually attribute their symptoms to something other than a result of this infection.
Yes, I guess my frozen shoulder (yes, likely due to previous Lyme infection) that started unfreezing a few months ago and is about 95% normal makes me not quite 100%.
And my slightly damaged gut that requires HCL for digestion, even though I come from three generations of people with digestion issues and mine is better than my mom's, my uncle's, and my grandfather's ever was, also makes me less than 100%.
Please excuse the sarcasm. I don't like being told I'm in denial. Then again, technically, you have never seen me.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Okay well maybe we should look at the other side of the coin..
Long term use of antibiotics increases the risk of cancer:
The authors of the study found that antibiotic use was associated with an increased risk of breast cancer. The more antibiotics the women in the study had used, the higher their risk of breast cancer.
One explanation that has been offered before is that using antibiotics weakens the immune response against cancer.
Other explanations suggest that antibiotics kill gut-friendly bacteria that help digest food and nutrients that protect against cancer, or that it is the conditions that lead to the use of antibiotics that cause the increased risk of breast cancer.
Yes, there are DANGERS associated with encouraging the use of long term antibiotics.
Go ahead and shut this thread down, because anytime the truth is told the controversy is too much for some..
quote:Originally posted by lululymemom: Go ahead and shut this thread down, because anytime the truth is told the controversy is too much for some..
Controversy isn't a problem here. There are many times that things are discussed in a respectful manner/tone. The problem happens when people come on and are abrasive to members and question their integrity. Eventually those people go too far and end up banned. Yes, you can read a threat into that comment, the implication was intentional.
BTW, I stopped abx. You aren't creating any controversy for ME other than accusing me of still being sick. I got well by another method because I didn't want to stay on abx any longer.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I think that we all know that there are risks associated with long term antibiotic use. It's why it is soo hard to find doctors to properly treat us.
Most of us are willing to take on those risks for the possibility to improve our quality of life.
I had been treating with abx for 7 months. And had seen many improvements.... But, now that I am taking a break from them, unfortunetly I am starting to see the symptoms coming back.
We all wish that there was a wonderful, cure all pill, that we could take in a single dose and be done with this horrible disease.
But, there isn't one.. (or at least not that I am aware of)
We all have our own paths to follow on this long Lyme journey. LymeNet is here for us to be able to support each other.
The mom in me wants to say... PLAY NICE!!
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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posted
I didn't read lululymemom's comments as abrasive or disrespectful. I think that the notion of a "new normal" is a very important topic about which we should banter honestly and candidly.
I, too, wonder what it means to be 100%. I know that a "frozen shoulder," for example, was a symptom that came on for me as a "Lyme" symptom, and it has since gone away with treatment. So, I would believe that, if my frozen shoulder remained or returned, it would be evidence that I'm still suffering from symptoms of Lyme. I also know that a frozen shoulder may not be perceived as a Lyme symptom by, say, a tennis player who injured his/her shoulder while engaged in play.
lululymemom's comments raise the important issue: should/do we expect "perfect" health (whatever that is?!) upon "completion" of Lyme treatment? And is there ever really "completion"?
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Each of us has to find our own way in this journey. Everyone must make their own choice... right or wrong it's their choice.
I'm always interested in hearing new info so I encourage open communication. I am still learning as I search for MY cure.
God bless!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Thank you so much, landerss... as well as others who have pm'd me I never meant any disrespect with my comments and only speak from personal experience..
I do believe this is a very important topic that needs to be addressed.
posted
No one is forcing anyone here to do long term antibiotcs. It's your choice.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I haven't been on here too much lately. I just wanted to say I do understand your thought process here. I wish you the best with your journey to 100% health. Sometimes, it's all perspective. The saying one person's trash is another's treasure. Well, it applies for many different things. My comment was driven by the hell I live in day to day. I WOULD kill to drive, to work a full-time job, to be able to take my young daughter out once on my own w/o severe anxiety, etc.
That said, others would just be happy to be out of a wheelchair, see again, etc. You get the idea. PERSPECTIVE.
Again, good luck.
quote:Originally posted by bcb1200: First...a disclaimer. I need to update my signature because I doont think I'm at 95%. I thought I was, but looking back I wasn't. I'd say I'm close to 90 on average with some days more and some less. Lately less.
Regardless, I don't like the comment implying I should be thrilled with where I am since "many would kill for it." Yes, I do live a mostly normal life now. I'm thankful for that given where I started out. but I'm definitely still sick and have some issues. I'm not going to settle for that. We all deserve 100%. Period.
I'm not trying to pick on you personally, seek. I've heard the comment from many others and don't like it.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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I, too, wonder what it means to be 100%. I know that a "frozen shoulder," for example, was a symptom that came on for me as a "Lyme" symptom, and it has since gone away with treatment. So, I would believe that, if my frozen shoulder remained or returned, it would be evidence that I'm still suffering from symptoms of Lyme. I also know that a frozen shoulder may not be perceived as a Lyme symptom by, say, a tennis player who injured his/her shoulder while engaged in play.
This is why each person has to be looked at individually.
I had a lot of muscle atrophy, mostly left sided, so my body was twisted. I had SI joint problems in my right hip, and shoulder problems in my left shoulder as a result of the lopsidedness (as diagnosed and treated by a chiropractor). These issues didn't come on until later in treatment as a result of my muscular imbalances.
As the musculature has evened out again through exercise, the SI joint is completely better, and the shoulder is almost there. There is no pain, just limited range of motion.
If it were my left knee, on the other hand, I'd be worried. My left knee hurting was the first sign of infection for me. It has not hurt since I was a few months into treatment.
I actually thought the shoulder was permanent damage. I was surprised when I started regaining range of motion.
Was my body damaged from Lyme? Yes. Am I infected. No.
It takes time after treating the infection to correct some of the damage.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
quote:Originally posted by Lymetoo: No one is forcing anyone here to do long term antibiotcs. It's your choice.
When Dr. B's Guidelines recommend treating with abx until 2 months past being symptom free, that indicates the potential use of long term abx.
quote:Originally posted by Lymetoo: No one is forcing anyone here to do long term antibiotcs. It's your choice.
When Dr. B's Guidelines recommend treating with abx until 2 months past being symptom free, that indicates the potential use of long term abx. [/QB]
- Sounds good to me.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Wow..this thread has gotten interesting.
OK..everyone has a right to their perspective.
SEEK...I'm not upset with you. THere is no need to clarify, etc. The comment you made, which others have made, is just a bit of a pet peeve. Just because I'm doing "ok" now (versus terrible), doesn't mean I should stop here.
Lulu..that is your opinion, and you have a right to it. I'm glad you expressed it...but wish your approach wasn't quite as abrasive.
There are risks to any treatment and many here feel the risks are worth the potential reward. In my case, if I do end up getting cancer down the road, at least that is recognized by the mainstream and there are usually decent treatment protocols that are covered by insurance.
Just my $0.02
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
I've had fleeting stretches where I've been better than my normal so I know that it must be attainable with the right combo of medicine and magic.
Nevertheless, the illness is a complex mystery to overstate the obvious.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
I read some of these, not all. Gotta fix supper.
I had a nasty chest cold/pneumonia for 6-8 months a few years back, started with an ear infection and ended with an ear infection. Last treatment was doxy, which after I was done I was 100% for the first time in nearly 15 years. Lasted about the month of July, by August I could barely use my right arm.
I saw a LLMD in Sept 09 I think, started on heavy abx that just shut me down. I've hit really close to 100% a few times since, about 6 weeks around Feb of 2011.
Even tho I've been dealing with Lyme for 20 years, my 100% is very different than it was when I was a kid, I can still tell when I'm 100% and when I'm not. As mentioned above, for those of us with long term problems, 100% is going to be very different than it was when we started 10+ years ago just because we're getting older.
That being said, 100% for a brief time at 32 is much better than were I was in "remission" and thought I was 100% at 25.
-------------------- Ticks suck. Posts: 140 | From Alabama | Registered: Aug 2009
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
quote:Originally posted by Lymeorsomething: I've had fleeting stretches where I've been better than my normal so I know that it must be attainable with the right combo of medicine and magic.
Nevertheless, the illness is a complex mystery to overstate the obvious.
scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
I must be missing something b/c I don't find what lululymemom said to abrasive? I see a person who is passionate about her point of view and has the need to express it. If we don't agree with it then move right along. I wouldn't want you all to agree with me all the time or I wouldn't learn anything new!
Maybe I'm used to it since I have 3 sisters... if you want to see abrasive then come on over!
=================================== BoxerMom,
I don't know about hitting ON James, but I have cyber hit him w/ a 2x4 before! I think he might still be mad at me over that.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Thanks, scorpiogirl.. you're right I do feel passionately about this subject.
Bcb.. I am sorry you don't like the way in which I express my comments, but fortunately I am not here to please you but rather to state the truth as I see it.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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James1979
Unregistered
posted
quote:Originally posted by BoxerMom: And I think we all should hit on James.
Yeah, well... I just don't think it was appropriate for Brussels to be proposing to me on the "Medical Questions" forum. You know what I'm saying? I mean, at least try to confine it to PMs, or maybe even the "Off Topic" forum.
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fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
Confession : I have to admit, whenever I see James post my hear skips a beat. Either I know I am going to laugh.... or maybe it is the Mepron. Either way James is a refreshing part of my Lymenet stalking.
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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posted
If a doctor told me to find the new normal, I would probably go nuts. When I thought CFS and Fibro were what was making me feel sick, I thought about settling for the restrictions that the illness caused.
Once I found out that Lyme was the real issue, I actually found hope. I know that whatever function I get back, is more than I have now.
You bet I want 100% back. I also know it is going to take a long time. Baby steps and progress will keep me going.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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