posted
Just wondering if there really is anyone out there who has 'recovered' from chronic Lyme? It' my understanding that one cannot really be cured (right?), but there's got to be some people out there who would consider themselves to be in a remission of some sort?
And if this describes you, what treatment protocol did you follow?
I guess what I'm getting at is... are the drastic treatment measures really worth it - is there that much relief to be found, and is the relief actually common among people who have been treated?
Thanks for any input!!
Posts: 12 | From Pennsylvania | Registered: Jul 2009
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posted
I'm getting close. I don't think treating the bacteria alone is enough. It takes a lot to rebuild the body so it's strong enough to fight on its own. We can't get rid of every single bacteria, so your body has to be able to keep the bacteria from wreaking havoc again.
There are so many issues - deconditioning, parasites, metals, KPU, diet, exercise, vitamins, minerals, etc.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Hearing that Six is so tough for newer patients. You've hit this disease with EVERYTHING but the kitchen sink and still are fighting it to a degree.
It sounded like you had the very best and aggressive LLMD treatment available, Bionic 880 treatment, lymph massages, and endless treatment protocols designed to help.
I know we're all different. It's just hard to stay positive knowing years of treatment at the highest level didn't wipe out this disease.
There are so many variations to Lyme treatment stories (i.e., TF did aggressive treatment and was cured in a year, others doing this for 7 years and not healed, etc.).
There just has to be more to this complex picture than we can see. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
I wish someone would do studies on the people who did get well and see what the difference in their boieds is with ours that don't? Maybe dna testing would help.
posted
Hi. I have been treating since October 2008. Since cycling 4 days on abx and 3 days off, it seemed to get rid of a lot more. Now granted I'm still taking abx but I feel like I was back where I was.
I take 2 minocycines a day 2 bactrim a day a really good probiotic I got from my health food store B6 Immunity Boosters w/beta glucans Multi-vitamin.
Now that I'm able to exercise I have been riding my bike, swimming, walking, and lifting weights.
Now the big question is, will this last?
I had lyme for 7 years that went undiagnosed. So not sure if this is chronic lyme or not.
Good luck. Lyme sucks
Posts: 46 | From NE Ohio | Registered: Nov 2008
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
happytoes,
Can't claim I'm cured, but I am in remission for over a year now. I was in tx for five full years and about 2 more off-and-on until stabilized. Here's the real kicker... I'm a congenital case and was almost 50 years old when diagnosed.
YOU WILL GET BETTER, BUT YOU MUST BE FAITHFUL WHEN IT COMES TO TAKING YOUR MEDS AND ABOVE ALL... IT TAKES T - I - M - E!
It was at least 3 years before I even began to start to feel better, then another 2 years until the extreme fog cleared. I do have damage from the Lyme and likely from the abx tx, but the alternative was death. ABX ARE THE TX OF CHOICE FOR LYME, PERIOD!
My Lyme was very neuro and I was on high doses of Mino (400mg+), then Mino / Flagyl flip. Took a bit of Azith during a real arthritic period and Diflucan is a must, along with probiotics and Mg+, but that's about it. Careful with the Flagyl; start with low doses if you've been on primary abx for a while, you'll likely have lots of cyst buildup.
Keep the faith and try not to get too discouraged. The sun also rises...
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
I'm closing in as well, just purchased and received my PE1. So the duel is on Six to see who declares victory first, haha!
I agree with six about the number of issues though. It is the disruption the disease causes, but if I were just starting out trying to make a plan for lyme.
Get an asyra test done before seeing anyone. It's relatively cheap, quick and will tell you alot about what is you have to fight. I would take the report to the LLMD or LLND you will eventually see. I know Cowden uses an asyra or EDS oriented device for his assessment. My LLMD required one of me.
While your waiting for results from asyra, I would make a one time investment in the following products to make sure you know of any vitamin or mineral deficiencies.
I would then see a biological dentist to assess the mouth and prepare to remove any mercury fillings loving called by the ADA as silver fillings. Check out any cavitation / tmj / root canal issues.
The mouth is the gateway to desease and any future disease. You just can't get well with a compromised immune system until the mouth is in good shape.
I would also change the diet. Lymies don't detoxify well. Lots of chlorophyl in the diet is extremely helpful also lots of probiotics build up the flora. Start this right away. If you need to take ABX getting a head start will only help.
Some others might have some view points on this as well.
One thing to keep in mind, how to budget this disease. One area as lymies we don't do well is work together. Create a group of lymies to share precious resources. Resources to create our own herbal tinctures and teas for example. We could save lots of money doing this alone. Getting more organized might help us save money. Money we could use for other expenses.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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posted
Seek, true that I went to a great LLMD for 20 months (still am a patient, but he only monitors thyroid at this point), now have been doing the Bionic 880 for 10 months (treat once monthly now).
I also exercise, get lymphatic massages and work on detox (herbs, liver cleanses, juicing).
In addition, I'm doing KPU (vitamins and minerals) and have treated parasites (and plan on using Humaworm again).
I have had Lyme for 36 years, I have been functioning at 100% much of the time, and 90% some of the time for many months now. I've been treating for under 3 years, so I don't think that should take away hope, I think that should give hope. I do expect to reach remission, hopefully, soon, I just think it's going to take a while to eliminate the toxins/build health.
And honestly, as I've gotten better, I realize that everyone, whether they have Lyme or not, manages their health. I don't know that anyone feels 100% day after day unless they're a child. I will always take herbs, supps, etc. to maintain my health.
Please have hope and continue the fight! It will take more than just taking meds though .... and I don't take as much as you probably think. I'll post my current protocol on my blog today.
Bob and I have been both struggling with the straggling Lyme issues and racing to the finish for quite some time .... but that doesn't mean we're "sick", we're just sticking around because we understand ... we're a part of this community.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I've been off abx for almost 5 yrs. It was well worth the 4 yrs of treatment!
I got the most help from Biaxin.
WELCOME!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I also got better and I believe, healed. I know Bb can come back again, but it doesn't matter if I can live my life back to 100% and even more.
I'm getting more of abilities I never thought I had (like now getting a picture of geography and space in my mind as I never experienced even before lyme), barely taking any remedies and only working with body energy (breathing techniques, some yogi positions).
Since I moved here 8 years ago, I could never climb a few streets with my bike without getting dead tired even BEFORE lyme. Now I can climb the SAME streets in mountainous Switzerland without being totally breathless (and NOT consistently training...). Not at all.
Six and Bob: most people that are still very sick even after years or decades of lyme treatment can't imagine it's possible to get our lives back, to get OUT of lyme treatment... they think we are probably inventing stories.
I let them thinking what they want. They think being healthy = being without infections. It's a narrow view of what health could be.
I'm still learning how to manage all the energy I get in a day. I'm still AMAZED to see HOW MUCH one person can accomplish in a single day. I had forgotten it was possible to fill a day in with activities one after the other, be these intellectual, bureaucratic, physical, or just for fun. And not be tired after for days on!
I had forgotten one could be creative in every single moment of the day. I now get bored after 10 min talk with boring topics. I can only stand 5 min talk with someone boring. I get impatient. I can't wait for things to happen, I have to fill my time with anything else pleasurable.
I'm back to watching films, listening to new music, playing instruments, singing, creating stories, drawing, working part time, planning trips or weekends, organizing my moving, re-contacting people I had long lost contact, creating a website about healing, reading books only for pleasure ONLY, not anymore for finding lyme treatments...
My German is better than it ever was, I'm amazed to see I still have memory and I don't need phenomenal effort like before! It just comes to my mind again, like before! I thought I lost the ability to learn languages due to age or lyme or whatever. I was wrong!
I am starting to learn some Corean now and excited about it!
This disease had taken from me my will to live. I had only will to survive for years on because the treatment was soo complicated, because toxins and herxes made my life very difficult. Then my daughter caught lyme, on and off again. Then she caught TBE...
My will to live is though back. It didn't come back in a day. It was a process. And it still is.
And I'm profiting from it every single moment, it's almost like if I see all the minutes pass and that I could even count each minute of my day!
this is sooo different from my days of energy ZERO...
Coming back to life is as difficult as fighting chronic lyme, for those who are in this phase.
I have my physical energy back for quite some time, but now I'm getting my mental strength back, my inner self back, my self respect, my concentration back.
Lyme destroyed social connections, affected self respect, made me feel so vulnerable to death and illness, it turned me into a hypochondriac, terrorized by ticks, afraid of the sun, noises, EMRs, mercury, pesticides, it made me forget I could enjoy something truly.
I'm learning to enjoy things again, from a simple book, from contact with my daughter, husband, good friends, family, sun, garden, music, good quality films...
I discovered I now have the ability to keep memory of facts, of geography, of things that happen around me, but this is still new.
I still have this big hole in my memories, when I didn't have a good memory due to lyme, so I still try to remember some people's names, faces or events that happened during neurolyme...
... but it's like these things that happened then are now covered with a veil, foggy, not of real substance. While things that happened AFTER lyme are now much clearer, they leave an imprint in my memory with clear images, names and feelings.
It is very uncomfortable to live with such gaps in memory.
I start to learn what are "proportions" or dimensions again, for feelings, events, relationships, joy. Lyme made everything flat, tasteless.
Even the taste of food, I remember when I got that back, I almost cried as I didn't think it was possible that a fruit could taste SOO GOOD. I had forgotten!
My memory before lyme and my memory of recent events (after lyme) are so clear, but my memory during all these 4 years with lyme, acute and chronic, are very foggy and unequal, and I wonder if most events were EVER imprinted. I'm searching for events, faces, feelings, during these years and get that blank sometimes...
So my healing from lyme disease now is not anymore concentrated on the physical level, but mostly on the mental, emotional and social side. I feel like a child learning again.
I truly arrived where I wanted to arrive during my most sick days. That's why I say I'm healed. But I'm still working on my own "reconstruction".
A bit like building a whole LEGO city again, brick by brick, that had been ravaged by a tsunami.
In some ways, I'm even better than before lyme. I don't have GI symptoms that I had for more than 20 years much before lyme, and I could manage my first winter without skin infections after more than a decade. I think most of it is due to heavy metal detoxification, and other energetic treatments.
Many people get better from lyme, and abx is absolutely not the only way.
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
All I can say is we need to share success stories even if its a symptom free day because NO ONE without Lyme has a clue how monumental that is!!!!!
Feeling better is a high that only someone with Lyme or a similar chronic illness can understand.
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
I'm really close too. I had undiagnosed Lyme for 2 and half years before starting treatment. I was on oral abx and antimalarials for close to 3 years.
I got a Rife machine about a year ago and used it in conjunction with abx until about 3 and half months ago, when I quit all abx and began just using the Rife.
I'm functioning at about 90% now, which is incredible!! If this is as good as it ever gets I'll gladly take it.
There IS hope!!
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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CherylSue
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Member # 13077
posted
This is a wonderful post. Please keep it going.
Thanks!
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
You might not be able to totally eliminate lyme, but you never totally eliminate mono, strep, HHV6, EBV, and many many others. Heck everyone of us has cancer cells in us but do we have cancer? No.
There is plenty of hope in getting better and/or well, right now it is just hard getting there because testing is still poor, alot is still not known, and treatment takes much longer compared to other illnesses.
Posts: 458 | From Miss | Registered: Mar 2009
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