Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
As some of you know, my LLMD has declared my wretched Lyme & friends "in remission." Now I'm in maintenance stage (with no abx...unless you count Mesosilver).
Anyway, I'm having a really hard time accepting that Lyme & Co just goes into remission (we knock the numbers down with abx, herbs, immune boosters, etc) and they go back into their "cages."
I guess what I'm asking (and saying what bums me out) is: why don't those cages have permanent locks on them? Better yet, why can't TBD's totally be wiped out of our bodies?
Must we accept that REMISSION is the best we can hope for and just be prepared for the stressors in life that may bring them out of their cages in the form of flares or relapses?
Please forgive me, in advance, to those of you who would jump for joy to hear the word remission. I'm just thinking of long-term answers for all of us.
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
After reading and reading and reading for years and years and years.......
Our bodies are a teeming mass of other organisms!
And the immune system, our faithful warriors, have their job to do. Born to fight, so to speak.
Think of all the ickies you have breathed and ingested in your entire lifetime....it was the immune system that fought the valiant battle! Many ickies are still hiding in there, in small numbers
Bless the body, bless the immune, and be good to it!
I think there is a lot more than tbd's in remission in our body! And the body will try to heal itself.
Our job is to help the body do its job!!!
However, I do think that this specific "battle" was more protracted than a simple virus or whatever. The body, I think, will take a longer time to come back to full health. The trauma of years of illness makes us fearful,distrustful, I think, and hesitant, in the beginning.
Goooooooo Warriors! (the battle cry!)
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Thanks, Azure Wish. Excellent points on all fronts.
I've had TBD's since I was a child and wasn't diagnosed until my 30's so I think your metaphor to cancer victims is a good one for me to remember.
I need to stop thinking in Black and White and accept gray. It's probably an important lesson for life, in general, anyway.
I appreciate your kind words and am sending healing thoughts your way!!
Melanie Reber
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Member # 3707
posted
Remission is a lovely thought...embrace it! Posts: 7052 | From Colorado | Registered: Mar 2003
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northstar
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Member # 7911
posted
OK, this is a personal secret. I truly kept a print of this in my sight and visualized it as my immune system. It is a little on the silly side, for such a serious question, but please,
May I introduce you to My Personal Immune System:
[IMG] more cat pictures[/IMG]
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
I LOVE it, northstar!
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
I heard Dr B speak briefly at a support meeting -- he said that if you don't relapse within 3 years you won't relapse. His words -- not mine.
Start the clock ticking. LOL
Can hubby switch places with you -- remission is not even in his vocabulary I don't think.
After 7 years of disability he is still stuck in the quandry of "What if I have some undiagnosed progressive degenerative neurological disease and it is not Lyme and Babesia and Bartonella that are making me sick?"
Loved the cat picture Northstar.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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adamm
Unregistered
posted
The LLMD's I've talked to say that you can, given the right
conditions, completely clear the
organism with time--others say you can't.
I don't think anyone knows for certain, and I, for one, am not going
to lose any sleep over the issue. We can live with
many potentially dangerous bugs in us without falling
ill from them.
Let's say non-pathogenic colonization is all that some can hope for--
even in their cases, could not Bb come to enjoy the same status
as Staph, C.
Diff (for some),
and Yeast? We
can go unaffected by them for virtually our entire
lives. I don't see why, given the right environment, Bb wouldn't
be able to become essentially commensal as well.
You've been through enough already; there's
no need to stress yourself worrying about questions like
northstar; loved your friend; we needed much humor!
I'D LOVE REMISSION! it's like bea said, would you want to exchange places with her husband, me, or any of us.
as melanie r said, EMBRACE THE MOMENTS ...
BettyG says ...ENJOY LIFE TO ITS FULLEST minute by minute, hour by hour, day by day, week, by week, month by month, and year by year!
personally, i wished i was walking in your shoes right now! my husband of 33.5 plus years has NEVER known me healthy. it was my wish to get into remission so he could learn to know the person i once was!!
"marrying in sickness and health" ... he's honored his vows well with me, and i to him!
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
For a long time, I refused to believe anything other than I was going to be CURED, no room for any other thoughts.
Mid August marks four years since diagnosis for me. I now feel pretty certain cure is no longer an option for me, and I use all my hoping energy to wish for remission.
Compared to the way I have lived for the last four years, I would welcome remission if even for a month.
A couple months ago, I had this one good day. It was so wonderful, it has kept me going even still. I am still thinking of that one good day, and how awesome it was to feel normal, walk five miles with a skip in my step, feel like the person I used to be, only with immeasurable gratitude.
I dont' think many cancer victims get that one good day, or that one good week like Shandy just had. I see that as the gift of Lyme.
We get these little breakthroughs, these good days, good weeks, and if we are lucky enough, the oasis of remission.
I now live for the dream of remission. And when it comes, I will revel in it, even if it is just one day.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
You guys are absolutely amazing and incredibly self-LESS. All of your sentiments have brought tears to my eyes because you're a bunch of the kindest people I surely will ever know!
I guess when you've suffered with Lyme & Co off and on your whole life, you're just waiting for the "other shoe to drop."
I was pm-ing a fellow lymenetter and explaining how I feel like I'm in purgatory because I'm not back into life yet but I'm not SICK in the true sense of TBD's anymore. I'm just scared and it's holding me back.
So I'm obsessing over "what if"s" (probably just to protect myself from any further diappointment). I'm in therapy trying to UNLEARN those terrible thinking patterns that, ironically, helped me SURVIVE and cope all of these decades.
I'm also very sensitive and feel such empathy for all of you still fighting but I pray that my being in remission gives you HOPE because I truly think I was a congenital baby. If I can get better, ANYONE can.
Thank you over and over for your loving, funny and supportive remarks (love the cat, too, Northstar).
posted
Waiting for the other shoe to drop is a hard way to live. I know that because when I feel well I am always waiting for it to happen.
Enjoy your remission. Embrace it and love it.
Remember also that if your symptoms come back you know what it is. You won't have the waiting and worry game we all have played with many ducks.
I believe that is worse than being ill. Not knowing what is wrong makes everything so much work.
So, keep your eyes open but don't be waiting for a crash.
I am so happy that your feeling well.
Have faith and enjoy your life...kit Posts: 655 | From Pennsylvania | Registered: Jul 2006
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
I know how hard it must be to make any kind of plans and move forward even if you are in remission, that is what is probably holding you back, but that is understandable as so many times you have moved forward started leading your life and WALLOP its taken away again.
Your so strong to have gone through treatment and I just know you will move forward and at the moment your new to feeling better, so just go with that for the mean time until you gradually add more things in to your life.
Personally I feel you should go and train to be a councellor or psycotherapist for us Lymies as you are so knowledgebale and empathetic to so many on this board.
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Clarissa,
Well, if remission is feeling good, healthy, normal and not-sick -- that's not so bad, right? And if it is a long-term remission; say the next 60 years or so, even better!
Love the picture Northstar! I do visualize my immune system as kicking butt!!!
Posts: 2557 | From home | Registered: Aug 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I think most people with chronic Lyme would accept remission over their ongoing daily pain and feeling unwell.
Yes, I believe that remission is likely the goal today. There is no "cure" or full erradication possible with what we have today. If that ever comes, I think it will be from energetic options not from chemical options like antibiotics.
Remember, we all carry a slew of herpes viruses as an example. HHV6, chicken pox (zoster), EBV, etc. They never go away, but they can stop affecting you....
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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ByronSBell 2007
Unregistered
posted
It could be possible to fully eradicate it but that would take years of IV antibiotics and putting the body in extreme temperatures for long periods of time... but then that might kill the patient as well.
Remission is a good term to use and there are ways to make sure you stay in remission.
I think everyone's goal here is to feel 100% healthy which can happen, but you have to realize... if you can reach remission then keeping it in remission will be 5x's easier.
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ByronSBell 2007
Unregistered
posted
My goal:
1. Reach symptom free 2. Get normal blood tests 3. Get off ABX 4. Keep immune system strong and do random lyme/co-infection tests throughout my lifetime to make sure everything is staying undercontrol.
This disease is so similar to cancer, the only difference. Less life threatening.
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I've been there, and now am on a relapse.
Living symptom free, not taking things to kill, not herxing, is EXACTLY like having a healthy life.
Exactly, it's not that we feel a bit well, only. No, it's LIKE being free of borrelia and friends FOR GOOD.
When borrelia gets in the cage , there are no symptoms, there is no fatigue, there is no disease, no pain, no feeling down, no feelling cold, nothing. You feel healthy! 100% again.
So the only difference lies in the possibilities. The possibility to fall sick again.
I stay for a couple or three months totally symptom free, then if something very stressful happens, I relapse. Fortunately, only borrelia is coming back, no bart, no other awful critters. For the moment, at least.
It is wonderful already, not to feel sick AT ALL, for days, then weeks, then months. I wish I could stay well for years. And if that happen, that's for me the same as cure. I don't matter what people call it.
Hope you don't relapse and that you get back all the energy you lost fighting this disease!
good luck! Selma
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
Hi, I've been "in remission" for 5 years. I would be cautious though about the 3-year cutoff for relapsing.
I initially got Lyme in 2000 and was "supposedly" treated and cured. Well, 3 years later, another tick (not a Lyme tick) attached itself to me, and it's like the little B. buggers came out of their cage like it was a big party. I think if you get another tick or something stresses your body big-time, I do thing a relapse is possible, even after 3 years. As long as we have them in us, I think we're in danger of relapsing, but as long as we keep ourselves healthy and we get no more ticks on us, we're probably okay.
Posts: 39 | From Massachusetts | Registered: Jul 2006
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posted
Oops, I think I got my years wrong here. Lyme brain is still there, but physically in remission. I've been in remission for 3 years.
Posts: 39 | From Massachusetts | Registered: Jul 2006
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Since there is no test to prove lyme is eradicated fully from the body, one must assume it is not. We cannot donate blood or organs either.
Once you are no longer symptomatic you could remain that way forever or have a "trigger" set it off again.
I would avoid triggers such as all vaccinations (even flu shots), corticosteroids, anything that you can control. Lyme has been known to be "set off" again w/a death in the family, divorce or other stressful events that sky rocket cortisol and set it free.
Even other infections can bring it on...staph, flu, you name it.
I agree w/Byron on his plan - symptom free, test neg, etc. I do not agree this is less life threatening than cancer. I simply don't believe it. There are many more forms of cancer, cancer is recognized where LD is not, so the stats may falsly appear higher, but we have no idea how many heart attacks and other causes of death are caused by Lyme, there is just no way to know unless every autopsy required a biopsy for Bb. Also, Bb seems to become more and more virulent through the years and w/the co-infections much harder to eradicate. If you look at pictures of Bb in 1981 it looked even less threatening than it does now. It will continue to morph through time..that is what bacteria does, it learns to adapt.
I think it could be more lethal in my opinion if we could only truly know how many deaths are attributed to lyme we don't know about. I think Ld could be a cause of cancer too, who knows. There just isn't enough known about this disease to come to any conclusions.
We can only hope that Bb are done wreaking their havoc on you for good.
you don't want anyone to get what you went thru all those years of hell, do you? i don't!
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Dear Friends,
Melanie, Bea, Vermont_Lymie, Ssmillik & Scott:
You're all so right about embracing remission and now I realize that is the ultimate goal. There must be a million other organisms in cages that stay in our bodies a lifetime without ever rearing their ugly heads. Focus on building the immune system and feel blessed for each healthy day.
As Byron wrote: "If you can reach remission, then keeping in remission will be 5X's easier."
Such a good point and one I should focus on now. I admire your tenacity, Byron, and always look forward to your responses.
AzureWish & Northstar: I already mentioned my gratitude but, thanks again, and the kitty does ROCK!
I wish remission for every single one of you...much sooner than later!
Brussels: You'll make your way back to remission, I'm certain. If I fall off the wagon, I know I'll have my friends here to pick me up again...hope you know we're all here for you, too!
Adam wrote: "You've been through enough already; there's
no need to stress yourself worrying about questions like
these."
This touched me deeply as you validated how much pain I, and ALL of us have suffered. Enough already! You're absolutely right and I thank you for pointing out what should be so obvious to me.
BettyG: I'm sorry your dear husband has never known the "real you." Maybe this IS the real you...look what you do for this board? Look how much you contribute and look at what a love affair you're experiencing with this man. You got one of the very few good ones!
Tracy9 wrote: "We get these little breathroughs, these good days, good weeks, and if we are lucky enough, the oasis of remission." That should be our daily mantra...incredibly prophetic and a quote that I will keep in mind often.
KitKat: Thanks for relating to the "shoe-dropping" fear. It IS a horrible way togo through life and I'm desperately trying to shake it...if you only knew HOW many shoes I've dropped in my life, I could open up an entire store.
But you're right, knowledge is the key, it is the power we here on Lymenet have that so many others do not have the great fortune of having and they just struggle blindly. We are blessed with out knowledge.
Lymebytes: You're so right about staying away from triggers. It was JUST the other day that I read that the Flonase I was using has cortico steroids in it. Sheeesh! If you guys EVEN knew how anal I am about my regimen, you would realize how SHOCKING it is that I didn't research that product that was helping me breath. My brain is so tired.
Rianna: You know me so well as you eloquently put into words with what my mind struggles. I was so complimented by your suggestion of becoming a counselor for Lyme victims. Honestly, that would be my DREAM job, totally.
I fell into Advertising very young and was drawn into the crazymaking world of pretend (hmmm...I wonder why?) It will not suit me now. I need something more meaningful than convincing people why they should buy a Nissan or drink Fris vodka.
I think I'll talk to my psychologist about the steps I'd have to take to pursue this kind of career because I REALLY want to do it.
If anyone has any suggestions on how I could start contributing/helping in the Lyme community, please let me know, because you're right, Rianna, I am so empathetic and Lyme victims are my peers.
These are the people I want to comfort and help.
I'm truly in awe of all of you. Sorry I'm being such a sap but I'm feeling melancholy and you've all really helped me through this day of reflection.
If I left ANYONE out, please forgive me...every single one of you gave me an ingredient for a wonderful recipe for remission and I thank you from the very depths of my soul.
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Clarissa! Love to see your posts.
My LLMD says once they get to remission, SOME people will have to take abx courses every few yrs. However, he has it himself and certainly has a full life (bursting at the seams practice for sure!). So maybe not too bad?
But maybe you're not one of those people!
Posts: 3528 | From US | Registered: Apr 2007
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bettyg
Unregistered
posted
quote:Originally posted by Clarissa:
BettyG: I'm sorry your dear husband has never known the "real you." Maybe this IS the real you...look what you do for this board? Look how much you contribute and look at what a love affair you're experiencing with this man. You got one of the very few good ones!
If anyone has any suggestions on how I could start contributing/helping in the Lyme community, please let me know, because you're right, Rianna, I am so empathetic and Lyme victims are my peers.
These are the people I want to comfort and help.
I'm truly in awe of all of you. Sorry I'm being such a sap but I'm feeling melancholy and you've all really helped me through this day of reflection.
If I left ANYONE out, please forgive me...every single one of you gave me an ingredient for a wonderful recipe for remission and I thank you from the very depths of my soul. Love,
wow, clarissa, can you write and touch our hearts with God's lovely words in writing!! A pure talent!
thank you for your lovely compliments to me and my very dear hubby!!
you mentioend helping others...
are you actively involved in the political scene on our 2 bills in congress:
S 1708 and HR 741 ... calling DC offices daily or emailing them and your state's FEDERAL SENATORS/HOUSE REPS?
you are a gifted letter writer; above is a wonderful example. to reply to the good articles and to write REBUTTALS ON BAD ONES and show why they are wrong.
have you contacted your local support group leaders for your state?? what do they need help with.
YOU'RE GREAT WITH P.R.!!
these are my thoughts off the top of my head since we have a willing volunteer who has gotten her life back together BEFORE lyme!!!
posted
My LLMd says the same, you can only put it into remission.
My daughter's psychiatrist reaffirmed his stand and said since lyme is a cousin of syphilis and there is no cure for that, there is no cure for lyme.
My 14 yr old daughter has had it since she was 6 1/2 yrs old and he said she needs IV antibiotics and believes her psychological issues are coming from her late stage lyme.
He believes she is not in remission yet. I have to say that after reading the many posts here..I agree with them.
My LLMD said that any trauma or sickness can start it all over again. My son was stung by a bee and even though he was on antibiotics for lyme, the area became inflamed, swollen, and the redness started to streak up his leg toward his heart.
The LLMD quickly changed his antibiotic and said the lyme was suppressing his immune system. After switching antibiotics, the sting got better, but his lyme symptoms came back with a vengeance.
It has taken me a very long time to accept you can't get better either. It caused me great distress and depression. I've finally accepted it and just hope one day my kids and I will reach remission.
Take care,
Posts: 56 | From Downingtown, PA | Registered: Jun 2007
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jamescase20
Unregistered
posted
NO NO NO.
Dr B killed his, that he had for MANY yrs many many years.
Ceftin, high doses, until he was symtom free, then stop, then he waited until he was all the way to the bottom of the pit, as bad as ever before.
THEN he took ceftin AGAIN, same way, until no sign of disese....SAME again, TANK to the bottom. ALL the way. Then he stopped again.
3rd time!!! Ceftin AGAIN, same way, then till comp systom free, THEN...he never got sick again.
THATS how he did it. THis is in the new book out. And I believe it. He said the key is to TANK to the bottom, and its very scary. OMG, I scard now.
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
A story for you, JamesCase:
I remember sitting on the floor of a bookstore with my best friend. We were both 20-years-old and we were rifling through books about genital herpes because she had just been diagnosed with this "forever" disease.
She had tears streaming down her face and I had my arm around her, trying to comfort her but thinking silently, "wow, this is really tragic...what will happen to her lovelife, will she ever find a man that will accept this in her and risk getting it himself? Is she doomed?"
She went to support groups and eventually started taking daily zovirax as a preventive measure. Each new man she met and considered being in a serious relationship with, she told the honest truth, leaving him an option SHE was never given (as her infected partner was not truthful with her).
Not one man left her. Not one man contracted her disease. She's been married for ten-years to an amazing man (who never contracted genital herpes) and they have two healthy beautiful children.
The IRONY of this story is that day in the bookstore, I felt LUCKY. My life would be a breeze compared to the pain she would endure. Cut to 20 years later, and yeah, well you guys know my story...TBD's, no husband, no kids.
But that's NOT the point of the story. The POINT of the story is that she still carries this wretched genital herpes as we ALL know herpes is forever and her life totally rocks!
Her herpes is in REMISSION because she takes Valtrex daily and it's OKAY.
I should have told this story to myself before creating this post but I couldn't see the forest through the trees.
Remission is not only okay, it's great and it's livable. Leave the black and white behind and head towards the gray. There are no true guarantees in life so I suppose it would be unrealistic to expect complete purity after a hurricane such as Lyme Disease.
There's always an aftermath after tragedy but it doesn't have to be permanent or fatal. It's all perception, and that's what I'm learning each day.
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