posted
Was wondering what lymies do when they cannot tolerate the antibiotic treatment?....I was on a variety of antibiotic cocktails when I was first Diagnosed with Late Stage Lyme of the CNS in 2002...the first antibiotic I was put on was Tetricycline which I couldn't tolerate at all....Didn't have any problems with all the others I was on over the course of 3 years including 1 month of IV Rocephrin (with the exception of a Severe case of Candida at the very end of the 3 years)....Got off all the antibiotics in 2005....3 weeks ago, I made a decision to go back on antibiotics....I started on Ampicillin (1st time on this med), Clairthromycin (previously used with no problems) and Hydroxychloroquine (previously used with no problems. After weeks of torture, with severe diarrhea, nausea, loss of appetite, cramping, dizziness, inability to walk, inability to sleep. etc. totally crippled....I have made a decision to stop them due to an upcoming 2 month trip to Florida that would have to be cancelled because I just would not be able to travel....Please Help....what hope is there for me?.......Queenie Pie
Posts: 59 | From NH, USA | Registered: Oct 2004
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
It is possible to cut the doses back?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Queenie, you say that you tolerated many of the abx early on so why not try others that you have used before?
If you were sick enough to get back on abx, then some of the sides you describe could very well be herxing.
Steer clear of Plaquenil initially. That drug can cause all sorts of wildly different sides.
Biaxin should be OK. You could also try Tindamax. You have to mix and match to see what feels best sometimes.
How are you feeling off abx? I can't imagine traveling for 2 months when I feel like hell.
Good luck.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
May I suggest that you start one med at a time, rather than going on all of them at once?
That way you can isolate your reaction to each of them.
Start one, wait a few days, start the next.
Even if you've previously used some of them, your body has changed since 2005 - and what worked then may not work now.
I also agree that if you're feeling bad enough to go back on abx, you are probably having a herx.
Hope you feel better soon.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Maybe start reading the rife threads? Do lots of reading and research. Maybe that's your road?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Detox has helped me tolerate abx. Without that, I have never been able to tolerate abx except one that did not treat lyme.
As others have said, you could be dealing with a die-off reaction. Detox can help tremendously.
There are many threads here about various detox methods if you search the archives.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
O.K. Are you taking diflucan/nystatin daily as well as your antibiotics. Sounds like that is a MUST for you.
Also, I found I was better able to tolerate meds I did not think I could after years of trouble with them once I began using a "binding" medication to remove toxins. Take the binders several hours after morning meds, and at least 4 hours before evening meds.
I use Welchol. There are other binders in this drug category.
So....nystatin/diflucan for yeast, and binders for detox.
I bet that would help a lot, and of course all of the previous suggestions are very concrete and necessary.
Hope that helps.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
You might try cutting the doses and maximizing their effect with HBOT and hyperthermia. Possibly grapefruit juice/grapefruit seed extract - I think there's some research on that multiplying the effectiveness of certain medications.
On a different note, has anyone ever seen any research on the effects hypothermia on BB? I know they have an upper limit around 106 but have never seen what their lower limit is for survivability.
Posts: 98 | From Maine | Registered: Jul 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
David, I recall Groovy2 saying his temps got to 90-91 deg with Babs treatment. Lucky he didn't die, but he's symptom-free now. I wonder if that lower limit hurt Bb? I'm not even sure Lyme was his issue though. I think Babs was.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Consider homeopathic remedies & nosodes, herbs? You need a good LLNaturopath for this.
Posts: 228 | From Mass. | Registered: Feb 2009
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posted
You could check out herbal protocols - many who can't do abx are treating with herbs.
the Buhner herbs - Buhner wrote a book, "Healing Lyme". His site is www.planetthrive.com, also a yahoo group, Lyme_Aid_Buhner
The Cowden protocol
The Zhang herbs
And I've even heard of more herbal treatment by herbalists from around the world.
Posts: 13116 | From San Francisco | Registered: May 2006
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
I am going to suggest For your trip:
Metagenix Candibactin-AR and BR Dr Zhang's Allicin (6 daily) www.hepapro.com
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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Sauna. Rife. Salt and vit C. Colloidal Silver. herbs. diflucan.
Posts: 347 | From sweden | Registered: Feb 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
You might try difulcan, which kills yeast and is also affective against the cyst form of lyme. To keep the active forms of lyme under control TOA free Cat's Claw was effective for me. I bought it in capsule form and took 1500mg a day divided up into three doses. You can also try teasel root and andrographis which is very powerful. Buhner gives recommendations in his book. It is important to take herbs 3-4 times a day to keep the concentration high in your blood. If you have co-infections you need to take something else for that. But nothing seems to work for bart.
Work on detoxing your body and building up your immune system with really good diet and necessary supplements. Be sure to take magnesium and B12 which are depleted by lyme and help with healing, muscle and nerve function etc. Take 600 mg alpha lipoic acid which is a powerful antioxidant and detoxer, and 1200 acetyl L Carnitine which provides energy, converts fat to muscle and helps with brain fog. If you are going south bask some in the sun. Otherwise take vitamin D3 as it supports the immune system and I believe it is one reason why we tend to become sicker in the winter.
When you start drugs, start very slowly at least at half strength and slowly introduce each drug so you allow your body time to adjust to each new thing and see what the side effects are going to be.
-------------------- 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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Coffee Enema's, FIR Sauna, Rife
Posts: 379 | From Sydney, Australia | Registered: Nov 2008
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
my friend took her 14 yr. old to a doc at hershey medical center yesterday for help with lyme pain. the doc (pain management) had had lyme (3 different times) and kicked it each time with vit.c & salt. he recommended this for her son and she is buying everything today. he told her to check out www.lymephotos.com which i read and it sure is interesting... and today i've seen it a few times on different threads here. maybe it's something for you?
-------------------- "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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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
I can NOT emphasize ASEA enough...whatever you do....it is Cornerstone. (In my experience)
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Is your candida resolved now Troutscout? How much does ASEA cost monthly? I'm glad it's working. Did Dr. C recommend it?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
What is ASEA?
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
My Candida is finally going away...changed things up....
Because of my families story and my maultiple speeches throughout the United States last year, I was flown out to see the Companies Headquarters as a Guest... absolutely the best thing I have seen.
I get mine at TnK Health Food Store in waterloo, Iowa
There are several Practitioners of varyiong degrees using it in Missouri...I have sent information to many Practioner's...we'll see.
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Troutscout, can you confirm you are not a salesperson or profit from this product? I'm sure that's not the cause, but I just want to make sure. How long does 2 $75 bottles last?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
I order mine thru the local Health Food Store....you are not sourcing it thru me.
They say one bottle a week the first month....then two.
Seekhelp......that's the last I'll say of the product.
I don't like being led in circles when asked about my integrity.
Call the Company direct...I Googled them for you...
801-973-7499
I'm tired of everyone on here thinking that someone is always out to make a freakin buck on them....
REPEATING WHAT I PUT UP TOP>>>>>>>I WAS A GUEST!
Because of my families story and my multiple speeches throughout the United States last year, I was flown out to see the Companies Headquarters as a Guest... absolutely the best thing I have seen.
I get mine at TnK Health Food Store in waterloo, Iowa
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I have always felt I couldn't tolerate abx either. But, it isn't that I cannot tolerate them (as hideous and scary and sick as I get) it really is that I don't want to becaues I can remain dysfunctionally functional on low doses.
What you describe sounds like herxing and with each herx and detox, you should make progress.
I have always said to really get well it seems we have to go to bed for a year, put up with intolerable herxing and then we'd likely make progress, but many of us want to settle for less, a ground we know and don't want to make any worse. When in truth ultimately, it should lead to wellness.
Lyme treatment is hard, we have to put our lives on hold and really depend on others to take our place while we go through the worst of it.
When the solution is worse or as bad as the problem, many will choose to do nothing.
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I have always felt I couldn't tolerate abx either. But, if I am honest about it, it isn't that I cannot tolerate them (as hideous and scary, torturous and sick as I get) it really is that I don't want to tolerate them because without abx or on low doses I can remain dysfunctionally functional and likely never get well...but hey, I can limp through life gritting my teeth, that seems easier than being layed up from a horrendous herx for sure. Most of us need/want some level of being functional and can't or won't put our lives on hold. So we settle for much less than what we could achieve.
What you describe sounds like herxing and with each herx and detox, you should make progress.
I have always said if each of us coud afford to hire a nurse, a cook and someone else to take over all the things we do and take care of us and rest in bed for a year, be willing to put up with intolerable herxing, do the high dose combo's, then we'd likely make big progress, but many of us want to settle for less, it is just easier.
We prefer to remain in an "area" we know and are familiar with, knowing exactly how bad it can get, we don't want to experience the unknown and how utterly bad it will surely get and none of us want to make ourselves feel any worse. It's a nightmare disease.
In truth ultimately, if we pressed on through it, it should lead to wellness.
Lyme treatment is the hardest thing ever, we have to put our lives on hold and really hope and depend on others to take our place while we go through the worst of it.
Even natural treatment can be absolutely intolerable. These are rotten bugs and I have yet to hear of an easy way of getting rid of them.
When the solution is as bad as, or worse than than the problem, many will choose to do nothing.
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
If it were me, I'd treat the yeast FIRST.
It is very possible your 'return of symptoms' could actually just be yeast, which is tough to treat and the dieoff just as brutal.
-------------------- 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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WildCondor
Unregistered
posted
Try starting one med at a time...adding the additional ones at 1 week intervals so you have a chance to see how you react. Keep a log of what you are doing. You sound overwhelmed. Try taking a small break, then starting one at a time. Make sure you are on probiotics and Florastor to protect your gut. You will be okay, just take things slower.
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
I am currently nebeulizing Nano-ized Sivler....wow!
ACS-Brand
It rocks...and yes...treat the yeast....treat the yeast.
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Queenie Pie,
I can't read your post but, addressing your question, you may want to compare and contrast the various links at this thread:
posted
BUMP
Posts: 88 | From Toronto | Registered: Nov 2009
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ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
posted
Since you are in New England, you could see a premier drug allergist at Brigham and Women's Hospital. She can help you to tolerate a treatment. email me if you want more information. Artist
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
just in case this might help someone i want to tel you that i am doing well on buhners herbs-but because i herxed so much i had to make a tea from them-a very weak tea-and build up. that way i only herx 2-3 days and it is very tolerable. gradually i make the tea stronger and take more. ate 4months i am staring to have som really fantastic clearheaded painfree days. i still have osteo arthritis that i bllieve started in my 30s from Bb. i just deal with that the way non-lymies do. so i will probably always be sort of disabled---but it is so wonderful to have my brain back and get away from th nerve pain
i could email the directions for the tea if any one wants them---i don't think i know how to put them on here
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Have you been tested for the HLA-DR4 gene? This gene can makes it more difficult for some to detoxify after antibiotics.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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