posted
I am getting depressed. Been 13 monts of abx, and I am better, but not there yet. Am I going to battling this for the rest of my life? I wake up evry morning around 5 nauseous as can be..then the fatigue etc. Need some encouragement.
I feel like I'll be on abx forever.
Posts: 561 | From eastcoast | Registered: Aug 2006
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posted
I wish I could say you were just around the corner and who knows, maybe you are. All i know is you cannot ever, ever, ever give UP or give IN!
Stay strong!!!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
Funny, I was just about to ask the same question.
I too have been on 12 months and feel very discouraged. Every now and then, we need some uplifting.
On the bright side, I have done many searches on this site. I see people who posted back in 2004 and 2005 who we don't hear from any longer.
I like to think that it's because they have gotten better and Lymenet is something that they don't visit any longer.
Maybe it's a reminder of how horrible they felt back then. Either way... if they dissapear it's got to be because they have gotten better. I like to think so anyway.
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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I am no expert on lyme, except I remember how depressing it can be to have priceless energy and time taken away day after day.
I have not been to this site since May because I consider myself a success story.
The best advice I can give is allow yourself to heal and believe that it will happen. While still sick and on docy/ceftin for 12 months, I had the arrogance to try to do everything I did before I was sick and thought I could still recover from lyme. I finally made a commitment to healing and took some vacation time to heal--not to go away, sit on a beach, or go sightseeing. But to meditate, practice yoga, reiki and rest (actually some of that time was spent on the beach ;-). Putting the same energy into healing, as I did to the rest of my life was the turning point for me. And believing that my health was worth the time (and lost income/spent savings) Fortunately, my husband, children, family and friends were very supportiive of my "healing time."
Carolyn Myss' Anatomy of the Spirit offered me great insight into healing and the power of faith over fear. (Guiding principles I had all but forgotten over my 2 1/2 year battle with lyme.)
I wish you all the best positive energy and healing.
Posts: 15 | From Rhode Island | Registered: Oct 2006
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ByronSBell 2007
Unregistered
posted
My LLMD tells me it can take up to 18 months to see any signs of improvement on ABX for the people that have had lyme for a while before diagnoses. Keep a chart of your pain and how you feel and see if around every 3 months if you are improving.... some people say they can feel a tiny bit better every month, some not so fast
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echostef
Unregistered
posted
Please, someone respond "yes" to this question, because I am losing hope myself.
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
I am quite a bit better -- much better after 15 months on abx and anti-malarials, but I am NOT 100% well yet.
I was very very sick when I started treatment last July, so I am thrilled by this progress! But if you saw me at 12 or 13 months, I still felt pretty sick. I think my current regime of plaquenil, bicillin shots, and minocycline is helping me progress after the past year on high dose amoxy, some zith, and malarone. However, I probably need IV to address some long-standing neuro issues from years of non-treatment for TBDs.
Just read in that great Lymenet Europe forum that one llmd, Dr. D, said for those of us who went years without any treatment, it can take 2 years or more. We need alot of patience with this treatment.
Have you been on IV abx? It is the standard treatment for bad neuro and cardiac symptoms.
Posts: 2557 | From home | Registered: Aug 2006
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quote:Originally posted by tennisplayercc: While still sick and on docy/ceftin for 12 months, I had the arrogance to try to do everything I did before I was sick and thought I could still recover from lyme. I finally made a commitment to healing and took some vacation time to heal--not to go away, sit on a beach, or go sightseeing. But to meditate, practice yoga, reiki and rest (actually some of that time was spent on the beach ;-). Putting the same energy into healing, as I did to the rest of my life was the turning point for me. And believing that my health was worth the time (and lost income/spent savings)
I just thought this was worth repeating!!
I have been in treatment for 10 months for Lyme/babs/bart. I was 15% when I began treatment in January and I am 85% today!!
I had a bad two months when I started bart treatment late last summer, but am finally pulling out of it. Treatment definately has it's ups and downs.
I have taken the same philosophy of "this is my job." I do all I can to detox, rest, exercise, eat right, etc. My family all know that my "job" right now is to heal .... and it's working.
I'd rather take the time off completely now and focus on getting better than do it halfway and take twice as long to heal.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
My son developed severe neuro symptoms three years ago. He has a postive western blot at IgeneX and a positive urine antigen with a positive reverse western blot on that.
HE IS FINE!!!!!! He took 4 months of cefdiner orally and now takes garlic and circulation P. He doesn't smell so good but travels all over China on business, flies to NYC etc - works 16 hours a day just because he loves it.
I know another woman who just got married and goes dancing etc after years of Lyme. She got well on the Marshall Protocol.
I think a big part of getting well is finding the right antibiotic and the only way to do that is trial and error.
It would be helpful if everyone like yourself would post exactly which antibiotics they have tried and how they responded. Then people like me could post suggestions on WHAT ELSE TO TRY.
I wish you the best, and keep up hope.
Paula Carnes
-------------------- Paula Carnes Posts: 23 | From Las Vegas, NV | Registered: Jan 2007
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Bit June 11th 2006. Saw my Dr the next day-since I didn't develop a rash, she said I was fine. Started having weird symptoms-ear pain, dizzy-still said I was fine.
Collapsed Aug 3rd-racing heart, dizzy, nausea. Started doxy August 23rd, Iv for 4weeks sometime in September. Then saw a LLMD-4 weeks mepron/zith, 3 months rifampin/zith/doxy, 1 month malarone/biaxin, the 5 months bactrim/zith for bart/babs again.
Started to wean off-symptoms came back-so here I am back on bactrim/zith. My adrenals are shot, my stomach is constantly nauseous and I still feel so tired.
I also got POTS from the babs, which I pray goes away. I'ld hate to think I'll have it forever.
Also on supplements for the adrenals etc.
Posts: 561 | From eastcoast | Registered: Aug 2006
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posted
I too have had my days (who am I kidding, I mean months) of thinking I will never get better and questioned how I would live the rest of my life like this. For that reason, I did some networking outside of any Lyme support groups/message boards realizing that only those of us that are sick live in the world of Lyme. Since I live in an endemic area, finding people who know of people with Lyme wasn't too difficult.
I have personally spoken with 5 different people that all had CHRONIC Lyme (one woman was sick for 20 years and was literally almost dead before getting her diagnosis). One person 'only' had neuro symptoms, another primarily joint pain and the other 3 had multiple systems hit. Anyway, they all have been in remission for anywhere from 2 years to 13 years (and counting).
Only 1 of the 5 people were better after 6 months of treatment (lucky lady) and the other 4 were treated for about 15-24 months. They all said it still took a little while for their bodies to re-adjust and feel 100% post-antibiotics.
Unfortunately there are people that do not respond to antibiotics but that is not the majority of people with chronic Lyme.
Keep at it...
Posts: 561 | From mass | Registered: Jul 2007
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posted
Thanks-that is encouraging
Posts: 561 | From eastcoast | Registered: Aug 2006
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All--
Yep you can get well again--I have -
I have had Lyme and Babs for 21 years-
Now after about 3 yrs of Good treatment I feel 95% well-and the only symptom that I still have to any large degree is insomnia - and it is getting better also -
It did take about 1 year or so before I felt any better- and it was just a Tiny bit better -
3 yrs ago I was really sick and I figure I was about 2 months from being dead-
Its Not Easy and sure No Fun but You Can get Well again--
It takes Hard work -a Lot of Pain - some good luck and doing Everything you can do to get your health back--
You have to Eat Good - Take your medicine on time and dont miss Any doses-
You Must drink Gallons of Tea or water Everyday to wash the bad stuff out - do what ever you have to do to Detox- Its Important -
You have to keep your spirits high and your will power strong --
You have to Rest as much as you can and get rid of as much stress as you can-
( dont worry about mowing the yard it will still be there when you get Better-)
Try to Laff at least once a day- the more the better -
Get a hobby that you can do from a chair to keep you mind bizzy -
Get a Good LLMD that you Trust - and then fallow what they say and then do 50% more -
Get Hi speed internet- its worth it-
Nothing about these diseases is fast - easy- or fun -
If I can get well You Can Too
3 yrs or so ago I wrote a post that was just like the post that started this thread-
So I know where you are coming from -
Hope this Helps you --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Yes. I am much better and have been for over a year now.
Initially I got better with just alternative care under an ACAM doctor. Then May of this year, I was bit again and went down quickly. Since I knew this was a recent infection, I went to an LLMD for the more traditional abx.
How surprised I was when her P.A. told me it has been this doctor's experience (ILADS LLMD) that until you heal the gut and clean up the parasites, metals etc in the body, there is not much good in going after the lyme.
Thanks to my year of doing just that, Dr was able to jump right into treatment. First she treated the adrenals and H. Pylori. That alone put me back into what felt like full remission. 100%. Not 95%, not 96%, not 99.9%.
She assures me we aren't done yet as I still have Babs and other parasites. Currently she is giving me IV's of herbals to clear the parasites and the lymph glands.
I'm fully functioning and feeling even better than before this tickbite.
Yes, you can get well. I totally agree with the doctor though that if you are not addressing your gut and parasites, metals, coinfections, then you are reducing your chances of healing.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
Yes, it's possible to get better, for sure, at least for me. Others here do report they get better, but not all post on "success stories" thread. Keep on going, it's amazing to see how ALL those lyme symptoms just fade with right treatment.
Luvs, we do have similar stories. I got reinfected in May, same date as your tick bite! Then fell sick with babs again, bart, mycoplasma... I attacked these new critters agressively, and the old ones together (borrelia and bart were the lingering ones from previous infection).
Now I'm MUCH better than before this 2nd infected tick bite, I believe in remission since about beginning of September. I dropped all herbs for lyme (only astragalus is 'testing'), not doing anymore the KMT, drinking wine socially, eating some 'bad' food in between good meals, and I feel fine.
No more sensitive to EMFs like before, no more fatigue from recent re-infection, even sex drive is back to stay (knocking on wood). I can even sniff chemical glues, paintings and plaster dust for weeks without feeling sick. Not a good thing to do, but I couldn't stay away from helping on our house reconstruction.
The only lyme treatment I'm on for the moment are homeopathic borrelia nosodes LM4 that I take about once every 2 weeks or once a month. Sometimes I add Aurum arsenicosum too.
What is difficult in these last phases is to create a 'protocol' as symptoms disappear, but it doesn't mean the disease is totally gone, critters may be just hiding.
So it's difficult to target what to do, and to know if what we do is on the right path as no symptom is 'improving' like before. A few people are on these maintenance phases here in lymenet, a few for years, so it means, yes, it's possible to get better!
These people usually post less or come only sometimes.
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I am better. Much, much better.
Not all better, but my worst days now are so much better than the best days I could hope for a year ago.
I continue to make progress in my treatment, and I'm enjoying my life.
I still have some fatigue and pain, but it doesn't stop me from doing most things I want to do.
My goal is to do some good skiing this winter, and at this rate, I don't see why not.
There is hope! You can get better! You can get well!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
Yes! I was sick for over 5 years before finding out I had Lyme. The same story as many people. I was told I had Fibro, probably MS, Lupus, RA.... so many specialist and many medications for symptom management but I kept getting worse. So much pain and little hope.
I found a LLMD and started treatment 22 months ago.
I am off (and have been for about 6 months) all pain medications and other symptom control meds. I am working fulltime, hiking, doing yoga, living my life.
I still have an increase in symptoms around my period. It is nothing like what I used to be like all the time but it still happens.
I have started the Cowden protocol in hopes of phasing out abx and just doing the herbs.
I exercise, detox, eat no sugar, organic.... the whole nine yards. I went that route before finding out it was Lyme just in hopes of helping control my symptoms.
People do get better.
I am 90-95% better nearly every day.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
cant say,, been sick since 14. At 22 drank too much and was severelly depressed while eating anyting.
The lyme then yeast grew and now about 7 years later Im still trying to get rid of it.
Still cant excercise to much yet. Still just eating veggies. watching my diet.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
I have 2 children with Lyme. My son is 27 and my daughter 18.
After 2 years of treatment my son is better. He is still on abx but has not felt this good since high school. He is back to work full time and able to exercise. He was married this past Spring. He has his life back.
I am now praying that my daughter recovers soon.
Posts: 488 | From NY | Registered: Oct 2004
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hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
I forgot to say my little one got totally well, in her case I believe she's cured. She was only 2 years old when she fell sick after 3 tick bites. She was treated immediately though, and it took her still 4 to 5 months to get better with mixed treatments (abx and alternatives). Co-infections had to be targetted!
But I think she's cured, as she's been a year thriving, even with a tick bite in between.
She'll be turning 4 soon.
Posts: 1086 | From Switzerland | Registered: Oct 2005
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quote:Originally posted by shoney: Collapsed Aug 3rd-racing heart, dizzy, nausea. Started doxy August 23rd, Iv for 4weeks sometime in September. Then saw a LLMD-4 weeks mepron/zith,
Sounds like you could use more treatment for babesia. It took me months and months and months to clear it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I had been sick for at least a dozen years before my diseases were diagnosed and I started treatment.
At my worst here were some of my symptoms: crippling exhaustion numbness in my right foot, arm and in my face cognitive difficulties
I had two bouts of full-body paralysis and periodic seizures. I literally couldn't remember where I lived and twice had to call home for directions from about a half-mile away.
My first winter on abx, I could NOT get warm or stop shaking. I had never felt so depressed.
I barely left the house for about 18 months.
After being in treatment (under care of LLMD) for 2 years, 5 months, I'm working fulltime (more, actually...since I have a parttime thing I do, too).
I'm also walking regularly, averaging about a mile a day.
When I was at my sickest, I tried to keep up my spirits and my hope, but in my more candid moments, I would have told you I wasn't sure I was going to survive this.
I'm always hesitant to post as a success story. I'm actually still on all three abx but have started cutting them all down.
Am I 100%? Heck, I'm not sure I'd even know what that would look like at this point.
I just want to echo what others have said to hang in there and keep fighting---with all you've got. Thankfully, my LLMD had warned me it would get much worse before it started getting better, and that was definitely true for me.
And you're right: there are people who posted and got better and just don't drop in that often anymore. For whatever reasons.
I hope this gives you some hope!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
Thanks everyone! This thread is so encouraging to me and I need that so much right now. We need more threads like this here . -Despin
Posts: 163 | From Cleveland, OH | Registered: Sep 2007
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Do most of you have to stop working for a year or more?
I am having more and more difficulty with brain fog with decreasing ability to concentrate; has dramatically worsened since antibiotic treatment started.
I just stare at the computer trying to remember what I was just doing. I forget seconds after and have to constantly go back to figure out where i left off. Is this normal??? What is normal? No one can tell me.
I am worried about keeping my job. But, I should not have to spend day after day worrying about it. Why can't I just stop working? I am struggling.
I feel that it is inevitable I will have to quit working. The stress of trying to "hang in there" is impairing my healing.
Any input is appreciated.
I would like to make a request for any member of the group that would be willing to talk with me on the phone about the disease and their experiences to please email me personally.
I really could really use the support and comradary, get some answers. I feel so lost. Family just doesn't understand....
I would like to thank CobWeb for her hilarious humor with her Home Health Nurse K antics. I came home from the Doctor just learning I would have to have IV abx. treatment. I was so depressed and angry.
I went to the IV thread and I laughed so hard like I never had before. Webby, you should be a stand up comic!!! You are hilarious. Thanks so much! If you only knew what it meant to me that day...
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