posted
Or at least close to it? I have been treating since November and am feelign anxious about not wanting to be on abx the rest of my life. I need to hear some positive stuff, please...
Posts: 200 | From Boston | Registered: Sep 2010
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sixgoofykids
Honored Contributor (10K+ posts)
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posted
Me!!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I have been in treatment with Dr. H in NY for just over a year and was treated by another llmd 1 year before.
I am about 85-90% back to normal. Many more good days than bad these days. Dr. H wants to go a 2-3 more months and then he thinks I will be at or very very close to remission.
I am cautiously very optimistic. Even just 4 months ago I didn't think I would ever feel this good again.
Hang in there!
Posts: 186 | From colorado | Registered: Jul 2010
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posted
I was undiagnosed for a year,followed by high dose oral ABX treatment for 2 years and 4 months, followed by Samento,banderol for 3 months.
I have been off the abx for 6 months now and I am back to normal (90-95%).
I am hoping to be officially deemed in remission when I see my LLMD in a couple months.
When I taking ABX, I did not really feel much significant improvement until the very end of my treatment. It seemed to happen within about a 6 week period.
Cautiously optimistic captures it well. I don't want to think about relapse but at least I know I could deal with it if it happens.
Keep at it!
Posts: 41 | From Victoria, BC Canada | Registered: Jul 2009
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Me!! 6.5 yrs now
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
In April, it was 6 years since I completed my lyme treatment, and I am still symptom free, enjoying my life.
I had undiagnosed lyme disease (and babesiosis and bartonella) for at least 10 years.
I have at least 3 friends who also got rid of their lyme and have not had any recurrence. I sent them all to a doc in our area who follows the Burrascano lyme treatment protocol. None of these people ever posted on LymeNet.
So, just know that people get rid of this disease.
There is also Dr. Burrascano himself, and Pam Weintraub (the author of "Cure Unknown") and many others.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I am glad to see this post. I am in the middle of very heavy IV antibiotics and just want to cry everyday, well I do cry everyday but anyways. The thought of not getting better is terrifying. I also was pregnant four years ago and have to consider what steps to take regarding my son this really sucks! Thank you for sharing your success and optimism. It really does help.
Posts: 253 | From CA | Registered: Jun 2011
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posted
I was told I am in remission after 5 months of treatment but not feelign like it?
I think my llmd and I need to talk very soon.
Many have been cured of lyme so keep the faith.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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posted
Did you all treat parasites? TF, did you and your friends treat parasites specifically?
Congrats to all of you!!!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Yes, parasites were a big part of my illness. So was mold toxicity. Also, Lyme, bartonella, and babesia. I likely had Lyme and bartonella for over 30 years, but think I got babesia from my tick bite 8 years ago or so.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Remission, to me, means 100%. It doesn't seem like most folks get there...most, it seems, have some sort of lingering/permanent issues from lyme and co.
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Really, Tri? So if you had bone cancer and your doctor came and said you would not die, you were in remission but you'd always have a limp, you wouldn't accept the diagnosis because of your limp? Really?
For myself, I can taste the "remission", it's so close. But actually, I'm going for "cure." I am going for better health than in my healthy days.
When I got sick I took 3 months of doxy and then 9 months later found an LLMD. I treated for 13 months on abx. and made the most progress when treating Bartonella and Babesia at the same time.
Then I changed to Cowden herbs and Parastroy (for parasites) for 4 months until I got to Germany for Bionic treatment.
In Germany, I was diagnosed w/ lyme for 15+ years plus 5 other infections.
The Bionic has gotten rid of lyme. At the moment, I am in a 4 week detox phase and mild Bart and Babesia symptoms have appeared, alternating. I will treat Bart and Babesia as soon as I am able.
Then probably treat parasites again and then see if I have to deal with metal and/or mold detox. My house tested high for mold so I'm sure that issue will come up eventually.
What I have learned thru all this is that a good attitude containing hope got me much farther than fear and grumbling ever did.
I'm far from perfect in this regard but my heart's desire is to trust the Lord when He says in Jeremiah 29:11, "For I know the plans I have for you,� declares the LORD, �plans to prosper you and not to harm you, plans to give you hope and a future."
Living with hope versus living with despair takes a conscious decision. Last fall, I chose to take hold of hope with both hands and not let go.
New International Version (NIV)
Isaiah 43 Israel�s Only Savior 1 But now, this is what the LORD says� he who created you, Jacob, he who formed you, Israel: �Do not fear, for I have redeemed you; I have summoned you by name; you are mine. 2 When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. 3 For I am the LORD your God, the Holy One of Israel, your Savior; I give Egypt for your ransom, Cush[a] and Seba in your stead. 4 Since you are precious and honored in my sight, and because I love you, I will give people in exchange for you, nations in exchange for your life.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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sixgoofykids
Honored Contributor (10K+ posts)
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posted
Good points, 17Hens. I have found that it takes a while to heal from Lyme. An example, I had a locked up shoulder with Lyme. It didn't hurt, I just had a smaller range of motion and I thought this was permanent damage. Would that have meant I wasn't 100%? BTW, it's starting to move again, slowly.
Also, I had mold issues when I was sick. I dealt with Lyme and coinfections but ignored the mold issue. I finally decided to go after it. I've said all along that I knew I still had toxins to deal with, this is what I was talking about. In between rounds of mold treatment, I feel fine like I normally do though I am not enjoying the toxin releases when I go after it.
This is a natural healing process of a person who was extremely ill and likely near death. Lyme does leave damage behind and it does take time for the body to heal after the bacteria is dead.
All this being said, I feel great. I get up in the morning after 7-8 hours sleep with no alarm. I teach 12 hours of pilates per week, plus I work out 4 hours per week myself. I care for a family of six (two children have moved out). I lead an active lifestyle.
It's so hard to even say what 100% is. I KNOW I'm healthier than MOST people my age.
I have an acquaintance who had cancer. She was told that she would not be back to normal after she got to remission for however long treatment was, ie, if treatment was six months, it would be six months post-treatment before she felt normal again even though the cancer was gone. I am finding this to be true. I had three years of treatment. I only have minor damage that is still healing. In one more year, I anticipate that it will be like I never had Lyme.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
I'm at 90%.
I think when I'm done with treatment, I'll be healthier than I would have been had I never gotten sick.
I eat healthier, I exercise, I take supplements, I avoid gluten, alcohol and most sugars. I don't touch processed foods or fake sugars. While I still drink coffee, I limit myself to 2 cups and afternoon it's either water or tea.
There's a whole lot of sick I jsut don't get anymore. While I still need the occasional Advil for neck pain and very weird inflammation/fever thing that comes and goes, I no longer suffer from sinus infections, ear infections, debilitating eye pain, vertigo, ear ringing, loss of concentration. My mind is still recovering from short term memory loss. But, who doesn't call their kid the wrong name? Sheesh, I can't be too hard on myself.
I'm not there yet that lyme is a gift, but as I watch my children get better, I suppose I'll be grateful one day.
Godspeed with your recovery!
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
It is sooo encouraging to see positive posts like these! I know it's easy to fall into negative thinking (I am guilty of this too) but I agree with you, Hens, thinking positive gets you further! - I am trying hard to do this! Thank you guys for responding! Hopefully, more responses will follow !
Posts: 200 | From Boston | Registered: Sep 2010
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fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
Beautifully said Hens, We are just walking through the fire right now, and He is with us! Faith ! I believe in my Dr. I believe in my treatment.
sixgoofykids, You are such an encouragement to all of us.
apljack , I agree most of us are even healthier after treatment, I want in that club, lol
Faith Baby! Lets hug each other when we are feeling negative !
Undiagnosed my friend, keep your chin up.
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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posted
I just wanted to thank those of you who are well who still visit the forum to encourage the rest of us. You could be getting on with your lives and forgetting about Lyme but you still come here and give us your time and encouragment. It means a lot.
I'm struggling with the Flagyl lately and it is disheartening to feel so horrible. It helps to read positive outcomes.
Posts: 41 | From Somewhere over the rainbow | Registered: Apr 2011
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posted
Awesome positive thread!! Thanks for this. I believe there is light at the end of the tunnel. )
Posts: 96 | From USA | Registered: Jun 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Someone asked if I treated parasites. I did not, and obviously didn't have to. I got well just taking meds for lyme and coinfections. I also didn't get my metal fillings taken out of my teeth. I asked my lyme doc about the fillings and he said that obviously, in my case, I didn't need to remove them.
One of my friends sent me her complete lyme protocol (she had lyme, babs, and bart like me). She also never treated parasites.
I don't know about the other friends. Never got into the details of their treatment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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What did/are you doing to go after the mold toxicity? Please let us know.
T
Posts: 10 | From USA | Registered: Jan 2009
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
man i wanta be in that number, when the lyme winners go marching on.. sickofthis, and flagyl (parasites).. and anyone with the feeling of leporsy... fight back, there is an answer.. kill the beast
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
that is one scary looking beast, payne! at least he's got rhythm!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
yeaha its a tickster... great to see the responses here, VERY ENCOURAGING... lead on.. wayne
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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merrygirl
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posted
Thanks to those of you who are well that come here still. Hugs to you
Posts: 3905 | From USA | Registered: May 2007
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posted
First of all.....I echo merrygirl. My mother just mentioned the same thing to me the other night.
Apljack-
Your earlier post is the kind of post that we need to see around here more often. We're all in this together, and the positivity can be contagious, especially if one is ready to receive it. :-)
I'm hoping and praying that I am about to turn a major corner in my own fight against Lyme disease. Sometimes I lose the optimism for a few moments, but I always come back to it.
It's no doubt a hard thing to do.....staying positive....particularly when you are herxing, or when the treatment just seems to go on and on and on, without much improvement. It's even harder when Lyme Rage is factored into the equation (you're upset, but the Lyme rage makes you even more upset!!).
Hang in there everybody. SO much easier said than done. BUT, HERE ARE SOME WAYS TO COPE:
*Stay as close as you can with loved ones and friends, and let them all know just how bad it is, so that they understand better and can help you. Hopefully most of you have people in your lives who ARE understanding, and who ARE willing to help.
*For those who don't (and even those who do), stay active on this website, join a local support group, have an LLMD who is empathetic and available, and try to find a therapist who has some understanding of Lyme disease (or who at least is willing to listen to you, and hopefully do a little research on it during his/her office hours).
God bless everyone out there!
jedidano
Posts: 116 | From North Carolina | Registered: Apr 2011
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by tahoma94: Six:
What did/are you doing to go after the mold toxicity? Please let us know.
T
Currently I'm using oregano oil and Dr. Natura cleanse. Dr. Natura has many herbs I've seen recommended for mold. Two years ago, my LLMD prescribed Diflucan and cholestyramine. That was right before I went to Germany. I took the Diflucan, but couldn't take the CSM. I think the oregano and Dr. Natura is a similar idea (kill the mold and get it out), but herbal.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
six--interesting. I'm on oil of oregano too, but I thought it was for yeast. Yeast/mold/fungi are all pretty much the same thing?
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
I am cured, considering I will be getting rid of neurotoxins for the next 20 years. This is what science tells us - it takes 30some years to get the neurotoxins out of the body long after the infections have been eradicated, the exposures to metals under control, dental toxins no longer a problem; the list goes on. The toxic metals and environmental gatherings are leaving rather uneventful when the body is again working fulltime.
It clearly shows me that a small percent of the problems that sent us into turmoil is due to the Lyme - a much larger part is due to the lifelong accumulation of toxins influenced by our lifestyle, who we are and where and how we live, all a part of the Five Levels of Healing. That is what I learned from Dr. K. and that approach helped me to get well again.
posted
anyone else now that it has been a couple more months? Would love to hear some positive news today! Posts: 200 | From Boston | Registered: Sep 2010
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posted
I would consider myself in early partial remission. Been infected 10 years or more. Mostly neuro symptoms.
A very long and bumpy road that has not always been linear. Many other factors to consider in my healing such as chronic mold expsoure, parasites, yeast, leaky gut and food allergies. Some of which were caused by lyme and some not.
I have been off of abx.s for close to 4 months now. LAst time I got to 4 months I got reinfected and needed to go back on.
I am back to running and hiking and training for triathlons again. Working part time, taking care of a pretty big house and property, and doing pretty much normal every day things. My energy levels are better then they have been in well over 10 years. I remember when just going from the bedroom to the bathroom felt like a marathon. This is a very humbling disease and I do not forget the rough times..
I still use my IR sauna and still working on detox and still treating for yeast and parasites but each day I feel stronger and stronger.
I still have a few symptoms that may or may not be lyme ( I have another neuro condition) and I always have my relapsed radar out. I know if I do not pay attention to all aspects of my healing I could go down again.
I did oral, IV, and towards the end pulsing my meds along with natural supp.s'. ONce I was well enough to start exercising again things really took a turn for the better. Never give up hope....
Posts: 151 | From North East | Registered: May 2011
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I am 3 and 1/2 years into oral antibiotic treatment. I feel that I am very close to remission, but I rather call it "cure". I only have a few minor symptoms left.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I feel I am in remission, as of March of this year. I had been in treatment herbal/abx sporadically for 5 years but this last round of abx(7mo) with herbs(OLE, Salt/C, lots of supplements) seemed to push me to a new place. Starting LDN is what truly did the trick though. My symptoms slowly disappeared over several months and I have been pretty much symptom free since. (I say pretty much as once in a while I will notice *something* but it doesn't slow me down and it doesn't last.) I am back running races, and living my life. Incredibly grateful for this life, too. Hang in there...
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Happy to hear from those of you that are so much improved. Would you please share some of your treatment, struggles and how long etc..
or to take a look into Polysans from sanum. They do something deep concerning 'clearing' old toxic load from infections, not very expensive and wonderful treatment, in my case!
I'm trying to build up cardio (jogging, biking), trying to apply the Peak 8 type of exercise Mercola suggests (impossible if you have lyme fatigue!!), doing Taichichuan after 2 years of pilates and yoga, and still fighting chronic candida on and off!!
I had chronic candida at least 15 years before I fell sick with lyme. While lyme is gone, candida still comes back from time to time. ----------
My daughter is also in full remission for about 1.5 years.
And we are STILL getting bitten by ticks (she had 2, possibly 3 bites this summer, I had 4 bites)!
she's only been treated with AI (allergie immun) and with heavy metal detox stuff, on and off.
We're doing everything to be better than before lyme, so that we don't fall so sick again!!
After lyme got dormant, we took a LONG break in treatment, as we were FED UP OF TREATING!
Now we're back, slowly, but as preventative!
Keep on going!
Posts: 6200 | From Brussels | Registered: Oct 2007
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posted
I suppose I am almost there, I was just retested and IGENEX test stated on first sheet IGG= Negative-Negative, the igm sheet Negative=Positive Then I got another one fromQuest Diagnostics: All negative with one band 41 positive. I still feel like I have it but I also have a strong case of candida, so I have been fighting that first. I also have Scleroderma (CREST) which was doing better on minocycline but they had to pull me off due to the yeast. The symptoms from yeast and sclero are so similiar to lyme that I really don't know, only what the tests say and they are not accurate.
-------------------- 30 Supplements Awaiting new protocol Diagnosed 2nd time 9/08/2011 with positive western blot No co infection Posts: 74 | From Pine Island, NY | Registered: Sep 2010
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Very few i read reach 100% is that because of the damage left by lyme? But the infection is in remission
-------------------- Posts: 215 | From California | Registered: Sep 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I have been free of Lyme, bart and babs for over a yr. Just on the last leg of getting rid of the smaller Filarial Worms. Got rid of a TON of larger parasites incl a tapeworm and everything pictured on www.lymephotos.com 5 yrs ago.
Did 4 yrs of abx incl 6 mos of IV rocephin, then switched to antiparasitic herbs and salt/c, and this is what turned the corner for me after being infected for over 30 yrs.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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lululymemom
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Member # 26405
posted
I don't believe anyone ever gets back to 100%.. I think the best you will do is 85-95%
I really hope those who say they are completely cured aren't giving false hope to those that aren't.
Long term abx use will also result in long term issues such as yeast or other immune issues. Sorry but that is the way I see it and speaking as someone who has dealt with this for a very long time.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I'm 100%. Seriously. I'm doing a 25 hour per week pilates training program. I am totally keeping up with my 23 year old daughter, who is also taking the program (not bad for 48). People who meet me, can't believe I was ever sick. My massage therapist told me several times last week that he can't believe how far I've come, I've been going to him since 2009. I'm 100%. There is hope.
But getting rid of borrelia isn't enough. You have to detox. You have to exercise. You have to get your vitamin/mineral levels right. It's not just treating borrelia.
And I did have to treat fungal issues. Mine were more mold-related than candida-related, so you are right, lululymemom, on needing to treat fungal issues. They are as bad as the Lyme.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I have been in remission almost 1 year now. See my signature line.
I feel really good, despite some other issues such as TMJ and spurs on my cervical spine area. I can pretty much do most anything.
As part of healing and regaining my brain back I do sequential processing activities to get my brain working again. Over 30 years of lyme really stunted my learning and processing so... I'm trying to get smarter even tho I'm in my 40's. I need to be smart for my kids. Be well.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
A couple days ago I felt 60%.
Today I feel 95%.
Tomorrow, who knows? I will just keep trying everything out there until I find what puts me into remission.
-------------------- 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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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I personaly will always stay on a maintenance of herbs and salt/c. Given the fact that there are cysts from borrelia and or parasites eggs that may be dormant, it only takes one egg or an awakened borrelia cyst to start the cycle all over again.
I think you can get to FEELING 100%, however, I think it's because of a state of remission not cure. I think this is why people relapse even yrs after remission. Best to be prudent.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
I am doing pretty darn good. It has been so long that I was sick that I have no baseline to compare to. All that said,I am SOO much better.Good luck and prayers to all those still suffering.
Posts: 342 | From northern california | Registered: Dec 2010
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