Topic: I'm off of antibiotics, 1st week after 4.5 years...scared.
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I'm feeling so good right now that I am not enjoying it knowing that Lyme could come raging back. I had a 30 year old infection. Then finally got diagnosed and started treatment with ILADS doc. With a great new ILADS doc now.
I started treatment 5 years ago in July. I didn't do a PICC line because I've been working full time. I have made it 3 months symptom free finally. I would get close and then bart feet would appear or fatigue would show up.
I've slowly peeled back malarone, rifampin, cefdinir, minocyline, tindamax, valtrex and plaquenil. What is my pharmacy going to do without me?
Slowly added in more maintenance herbs and supplements.
My oldest son, 22, has been on maintenance for a year now and has been symptom free. Can I do it too?
Any advice is welcomed.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
YES!! You can do it!! Get lots of rest, keep a good diet, etc!
I stopped abx 11 yrs ago and never looked back. (well, sorta )
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Yes. There comes a time when abx are not your friend anymore for many
Maintaining on herbs often works better
Its good you have the experience of your son maintaining on herbs
I thought i had it hard not getting dx for 15 yrs. You must be a fighter
I had fiur kids-gave it to the last one thru placenta and breast milk
The others all got infected on their own
They arecall doingvwell now...funushed college, married, working
It seemed i was fighting forever to get them tx but it paid off in the end
You can do this. Use us for support. Theres a lot of experience here and ppl wo care
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Very happy news, I'm glad your feeling well!!!
Enjoy life, you missed out in a lot in the past years.
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
you can do it!!!!
I did and I know how scary it seems. my current dr doesn't believe in abx for this becasue he treats with herbals, but I didn't want to let go of that . when I did I was happily suprised that I felt better in many ways and I *could* do it- to live without abx forever.
I sometimes get worried about getting rebitten or a relapse or whatever else could happen, but I tell myself if I need it down the road then I will deal with it then. and decided to try and live the best I can in the now.
I am a constant worrier and battle anxiety (recently found with my genetic testing to be quite a bad area for me!) and so I know how this can mess with your head and all that.
my advice is to put the positive thoughts foremost in your mind and focus on that.
good luck and blessings!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Thanks everyone. I've come a long way but was never as sick of many of you. I was more like a sort of bad case of lupus.
It just stinks that I am well and 19 year old struggles so badly!! I would easily switch places. Hard when I gave it to him and somehow I get to get better.
Today I am cramping in feet and hands. So I wonder if from weather change or a "sign". I think with time I won't be so sensitive to my body and know I am OK.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
I stopped the antibiotics 3 years ago because I could no longer tolerate the drugs. Soon I noticed that I was feeling a little better, very, very slowly. It really helped to not be thrown about by drug reactions, hurting intestines, etc., and I have been able to chart an alternative course through my health care issues.
The improvement has continued to this day. Hope you have the same results.
Posts: 705 | From WA state | Registered: Jul 2011
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
You will do great, I feel it!
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Great to hear, Kari. So happy for you and your eldest son.
I've been off abx since Thanksgiving, but went on them again in February for just a month after getting the stomach flu.
I am following up (maintaining) with Byron White Formulas A-L for lyme and A-EB/HHv6 for viruses. I'm no worse than when I was on abx.
I do have some candida after 7 years on abx, and I'm working on that with just herbals although my doc did give me an RX for antifungals. I've lost my desire for sweets, so I know I'm going in the right direction.
It was scary for me to go off abx, and I know exactly how you feel. I have some abx on hand in case I get sick or extra stressed, and that back up gives me peace of mind.
Just maintain on herbs like Byron White Formulas, and don't think about it.
Good luck!
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
I think turmeric is very good to take - it's anti-inflammatory. I'm not taking any antibiotics now and turmeric is treating - takes down pain in muscles and joints, and I feel it working fairly too.
I get turmeric in bulk powder from the healthfood store and dip empty 00 size capsules into it, I take a couple a day.
Posts: 13116 | From San Francisco | Registered: May 2006
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
It's July, and I started relapsing the end of May. At first I thought it was herxing on GSE. I stopped the BWF's and went on Cefuroxime Axetel and nystatin again. I'd feel good and bad on some days. Now I'm almost into a full relapse. I'm sorry I discontinued the abx for 3 months. I felt okay at first, but then symptoms were slowly creeping back.
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
I'm sorry CherylSue. This disease is a real source of pain and suffering. Are you going to continue treatment again, or go
with herbals ect?????
-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
No, I'm back on cefuroxime axetel, generic Ceftin. Also,on Nystatin. No herbals at the moment. They don't keep the devil at bay long enough for me.
Had a really rough night last night. Burning skin. What can I do for that? I had to use wet towels to calm it down.
Yes, I am now in a full relapse.
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
The only think that made my burning skin go away was treatment. I'm still on month ten of treatment.
But my skin used to burn ALL the time and it traveled around. If you want me to mail you a list of supplements my LLMD has me on, and the ones I choose to take on my own private message me.
-------------------- Lyme flare June, July, August of 2013. Diagnosed September 2014 Lyme, Bartonella, Mycoplasma, Mono Posts: 595 | From Texas Crossroads | Registered: Oct 2014
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I relate to your feeling. I was on treatment for 5 1/2 years and 16 months of that was IV.
But when I was going to stop all abx, I too was scared silly.
As others have mentioned, it may help you ease in to the cold turkey by taking an herb or two.
Get plenty of rest and eat a healthy diet and focus on living again. It's so hard to visualize yourself all better, but you CAN do it.
I had a lung surgery that knocked me out of remission, but I'm BACK in remission and moving forward. Good luck to you.
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
Congratulations! You can do it! Believe! You went through a long treatment process. Be well. Enjoy.
I am feeling better, improved greatly, maybe at 75% on best days. Then, a little voice enters my mind, saying it won't last, I'm going back sometime to illness. I think it's a type of PTSD, from the trauma that this multi-faceted illness has played on my life.
I have found that counseling with the right person, who understands chronic illness, is helping me. That healing emotionally is also an important part of recovery from Lyme & Co. That for me, yoga and mindfulness meditation are also a part of the healing process.
So, whatever you may be comfortable with in the realm of emotional healing, I'll cheer you on in that direction.
And stay on whatever maintenance program is best for you, too.
Best wishes on your recovery! Hopeful4
Posts: 873 | From WA | Registered: Dec 2005
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Thanks everyone for your replies. I haven't been on in a while.
I'm still hanging on in remission. Taking my herbs daily with extra vitamins thrown in there. I'm afraid though that now that my job has become unbearably stressful, I will be in trouble soon. Nothing I can change. I'm stuck as I am holding insurance and husband has cancer and is on disability. How quickly life changes. I've got to keep working no matter what.
I did start with a therapist as Lyme, PANS and now incurable cancer are bit much to manage. I'm doing well considering!! Maybe yoga will be next.
My oldest son is now weaning off of maintenance therapy at age 22. He went a full year on maintenance with no symptoms. He even graduated with an engineering degree from OSU and has started a new job in KY. Even the stress of all that didn't stir anything up in him.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
When I came off abx I had a few side effects. I felt dizzy sometimes, I think this was a side effect from Zith and mepron. But after awhile it went away and never came back. I do all the normal things I did before. I drink wine when ever I want and no problems at all! I exercise and try to get as much sleep as I can. Give your body a break, take a phamacutical grade vitamin everyday and stay on the probiotic for a few weeks to build up your good flora. Let your body's own immune system kick back into gear, it will take over. Do some light exercising and eat good and healthy meals.
Good luck!!
Posts: 160 | From somewhere | Registered: May 2010
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Kari,
Everybody's body is different. Remember, Dr. P talked about maintenance abx once every other week and eventually one week a month. He told me that he still took abx once a month to keep himself in remission.
Or, you could be like me who went off for 3 months. Felt okay for the that time, and then symptoms came roaring back. Took a few months of abx to get myself out of this latest relapse. Byron White Formulas weren't strong enough.
I am battling a cold right now, and I think it stirred up some viral things. Fatigued.
Good luck!
Posts: 1954 | From Illinois | Registered: Aug 2007
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