posted
Is there any hope out there!? I know there is, but what does it consist of??
I was diagnosed and treated 13 yrs ago. Since then I have been up and down, ill and not so ill, sometimes even totally fine.
Now I am just plain ill. So my MD is trying to figure out what is wrong. (recognise the story??)
Anyway; my point here; after 13 yrs should I count on living with Lyme? I am a bit confused as to wether I will have my symptoms in varying degrees the rest of my life, or is there hope that it can be totally gone from my system at one point?
Posts: 155 | From Norway | Registered: Jan 2006
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I have had this most of my life and so have been like a monster, or feeling like one.
Also, I believe there are the physical part of the illness. The emotional part, which is stemming from physical, but also from life situations.
The mental part which is where the potential for turning around a thing at a certain point, with the help of the spirit and soul.
So from a great weakness can come strength.
Today I am into 6 months of antibiotics and have just started flagyl combo bicillin and realized I have bartonella coinfection.
Today I realized I could actually die from this disease and its medicine.
No doubt, I felt it in my heart last night very close to death knowing the medicine was in me doing what it does and it felt as if too late may show up and I end up in the ER dead from how it is in my heart. Also some strange in the brain sensation plus panic waves which is separate from the physical heart.
But, however, I have also life circumstances that are external to the internal lyme disease that need to be addressed and looked at.
So what I am saying is that YES it is possible to heal this diesease but it is not with antibiotics alone. For me it has become clear the antibiotics were indeed necesasry. I was throwing myself into things and lost my mind.
So, I am on the verge of healing no matter waht and nothing can take that from me, I will not relapse and it is all in my heart that tells me this.
Does this mean I will be symptom free? That is something I cannot say. But I will be healed even if I do continue to have symptoms.
With the symptoms, I am not sick, but well. Not weak, but strong. Learning to trust the divine will and live within it with courage...
Sounds pretty I know. It is very ugly on the inside of it. From that, comes beauty.
Now let me see if I have arranged my paragraphs so Betty and the rest of us neuro lymesies can be sure to read it.
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi siggy
There is always hope. Hope has kept me going now 20 years with lyme.
You might want to look into herbs or rife. Not to say a person has to totally go off abx but can mix these in combonation to them. I am planning to ween of abx VERY slowly by adding these alternatives.
Do a search up top on herbs & rife and there are MANY sucess story's posted here.
If the process is too overwhelming you might want to look into getting a good herbalist or homeopathic.
I just bought the "Healing Lyme" " By Stephen Buhner. I got mine at amazon.com.
There is also a good book on alternative treatents "When antibiotics fail..Lyme disease and Rife machines" By Bryan Rosner.
Both I think are a must read.
I am planning on taking my week off and tackling the reading of both books.
I have a hard time reading...But I found if I just go paragraph by paragraph and take notes ..It's alot easyier digest the information.
take care and hang in there LOL.
Read the top link under the newbie section about the first ever research center for chronic lyme in columbia-opening its doors in April!!!!!!
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
13 yrs, but how long did you receive TREATMENT? It's very possible you were not given enough treatment, and therefore you probably have alot of room for improvement.
I've had Lyme for at least 47 yrs and was not dxd and treated until 5 yrs ago. I'm doing VERY well now, but I'm stil considered "chronic" and always will be.
It's the quality of life we chronic lymies are after. It WILL happen if you get the proper treatment.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
I believe chronic will be having to monitor my health carefully forever. My quality of life is very good with no neuro symptoms, minimal pain occationally, and no disabliity.
posted
Well, it looks like my goal is going to have to change from getting well to staying alive.
Posts: 8430 | From Not available | Registered: Oct 2000
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bettyg
Unregistered
posted
Painted Turtle, A+ on your wonderfully written, shortened paragraphs! LOL. A lot of heart-felt meaning behind what you wrote.
I too have been wondering about myself lately especially after my 2-9 major herx from flagyl I posted about, I'M OK, police checked up on my health.
My heart hss been telling me I have less than 2 years the way I am now. Misdx for 34 yrs. On antibiotics since 8-04: doxy & biaxin plus diflucan & trental.
Total of 19 rx meds I'm on. LLMD put me on flagyl; PCP stopped me after herx. LLMD wrote that NOTHING is helping me at all; he doesn't know what to try next. That's discouraging.
Oh, are you folks getting copies of ALL your LLMD appts., blood, xrays, etc? If not, ask for them. I learn more from the things they do NOT tell me, and I get ALL ERRORS correctly promptly.
This is because it took me 5 years to get my SSDI, disability paperwork approved. There were errors galore in my 6" plus of medical records submitted on my 2 files; but they weren't corrected in a timely manner since I never SAW/RECEIVED the.
Chronic lyme research center, you'll see my last post that they don't accept brains/body for autopsies for 1 year since they are just opening up. I want my brain/body to HELP others NOT go thru what I have gone thru these 35 years of hell.
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quote:Originally posted by lou: Well, it looks like my goal is going to have to change from getting well to staying alive.
that shouldn't be funny but i can't stop laughing Posts: 731 | From Humble,TX | Registered: Feb 2005
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Hi lou,
So sorry to hear your prognosis has become so bleak. I truly hate this disease.
brent, yeah, funny in a gallows humor kinda way, I agree. This disease hangs over us like the sword of Damocles -- we never know when its gonna fall, and we keep re-defining how much of it we can live with. We keep re-defining what healthy is.
Alive, yeah, as Richard Pryor once said -- beats the alternative.
Siggy, I guess the responses you got say it all. To me, "chronic" means never taking my good health for granted again. I don't think of a cure, since no one can prove that all the bacteria are gone. I think of remission.
I never thought I'd get this healthy again, and I am guarding my health by reducing stress, eating healthy, exercising regularly, and continuing to read. yet part of me knows I could relapse, so I am making lifestyle and vocational changes with that in mind.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
I've been sick 15 yrs as of Dec 2005 and I have to say , for myself, I no longer look for a "cure" and haven't for a few years now.. What I do look for is a better quality of life because for the last maybe 5 years my own quality of life with this damn disease has been worse than a heart bypass patient...
posted
Your answers all got me thinking in a different way about having lyme. It is frightening not knowing what will happen next. Every day waking up not knowing how one�s health will be.
But still. We are alive. And that is something worth fighting for. Life has suddenly become even more precious. Strange, little things make life better. Things I didn�t pay attention to before. (i.e. nice weather, people who care etc)
What made my life worth living before has to be different now. Now I have to find out what my body can handle in a new way. I feel like a little child trying to find my way in a new place. It takes time, but eventually I might get the hang of it.
Nobody knows how well one will get. Or how ill. One day at a time and enjoy what can be enjoyed each day.
Maybe this ought to be a poem? Sounded pretty nice Posts: 155 | From Norway | Registered: Jan 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I was sick, undiagnosed and mis-treated (read steroids) for over a decade before starting abx for Lyme.
Since June I've made a lot of progress and continue to keep getting better.
Maybe I'm too new at this and havn't had my hopes completely dashed, but I'm banking on a full recovery.
Like shaz said, though, no matter how I feel, I'll NEVER take my health for granted again!
Betty, I'm sorry your news isn't better; I really am.
Andie
[ 19. February 2006, 03:43 PM: Message edited by: Andie333 ]
Posts: 2549 | From never never land | Registered: May 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Siggy -You are a poet !!
here's one little ditty
"roses are red violets are blue I am sick but getting better too."
LOL Siggy
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Keep an open mind about treatments. The Rosner and Buhner books are great. Work on healing body, mind and soul. There is always hope for a full recovery but short of that, work towards quality of life as others have said.
We are the lucky ones. There are many who will never know what is wrong with them and thus will never have a chance to heal.
Hang in there and never give up the hope of recovery. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I think the answer to your question is different for different people.
Posts: 8430 | From Not available | Registered: Oct 2000
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bettyg
Unregistered
posted
Andie, thank you for your comments & thoughts; I do appreciate it.
Yes, I'm very thankful still for:
I'm in a loving relationship w/hubby of 31 years; we are independent still; I can still dress myself; feed myself;
doing the basics of life; my lyme brain fog still lets me REMEMBER many things vs. Alzheimer's/dementia patient can't remember and most of all ENJOY;
I don't have ALS; where my mind works but the rest of my body doesn't work at all.
I can still go in city events since I can't travel further than 30 minutes.
The outstanding wellmark/BC/BS retiree health insurance benefits my husband got when he "retired" vw. my leaving work after 30.5 years of service with NO BENEFITS!
Outstanding drug benefits; $250 max for 1 year. January's meds totalled $800, but my cost was a little over $100 so in March, my deductible will have been met!
I don't mean to brag over those with NO health or drug coverage; I just am so appreciative of this since Dad's rx were $500+ a month.
Also living each day to its fullest as we never know what tomorrow will bring us. Later, Bettyg
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posted
plenty of hope! natures best abx are silver and oil of oregano. I should have been dead about 3-4 years ago. Not cured yet but i gots me a fighting chance. ditto on the above statement, most have no idea why they are so messed up. least we know and can do something about it.
Posts: 731 | From Humble,TX | Registered: Feb 2005
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
There is also the future to look forward to. I truly believe that , if we can keep the pipelines to research open, that Lyme treatment will be quite different 10 years from now from what either IDSA or ILADS are doing right now.
Although I do think that ILADS is a lot closer to the heart of the matter than IDSA is!
In the future, our kids won't have to suffer what we have, because we persisted.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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