posted
Im thinking of going off abx because I have not really had much improvement. Still have to be on narcotics for the pain and sleep 12 hrs a day. I have tried mepron and azithromycin and ceftin and azithromycin and plaquenil and artemusinjn with abx and cryptolepsis and abx and doxycycline and zithromax andplaquenil and biaxin and plaquenil and coartem and so you see I've tried alot and been on these abx for four years with 10% improvement. Less headaches that's all really. So looking for some advice or new treatment to try...guess im a tough case or I don't have Lyme disease. Met a doctor who doesn't believe abx are a good treatment for chronic Lyme only acute because of damage they cause and bugs are too smart. Im starting to believe what she has to say.
Posts: 723 | From boston,ma | Registered: Jan 2011
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
I am in the same boat, tried a ton of ABX & even more so than you have.
All that I have managed to do was to create more & more Lyme symptoms as treatment progressed. I will say that ABX did help me a great deal & I would have had to blow off my head otherwise.
The problem I have is that if I get off ABX within 2 months I get to a very bad stage, so it does keep the buggers still & quiet while I am taking ABX.
I say try to find a herb that you can take long term. Maybe Cryptolepsis or Banderol & Samento to see if that keeps you in check.
Posts: 2087 | From NY | Registered: Oct 2011
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Change your diet and cleanse your body. Maybe that will change everything. You never know.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
I also tried almost every abx for Lyme and cos but without success for 8.5 years.
Salt/C, garlic/ginger, and, recently found, iFlora are more beneficial.
Although I feel that abx are somehow beneficial, but probably not due to killing of Lyme and cos pathogens, rather due to controlling of other bacteria overgrowth as a result of the weakened immune system we have.
Right now I am only on iFlora and fermented vegetables and feel better, even I don't know how far I can go.
Posts: 1078 | From Fairland | Registered: Apr 2006
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Katrina-I understand why you are ready to throw in the towel.
I don't think it is you...I think it is time for a new LL.
I just want to say...
I have tried WAY more combos and abx than what you wrote...in just 11 months.
Looks like you don't have any round body busters on your list...
Sounds to me like you need to find a more aggressive LLMD. One who keeps trying and trying.
I've had lyme 13 years, rebitten, reinfected Nov 2012. Lots of cos.
Been treating 11 months now, very aggressively burrascano-style, and am seeing serious improvementchro
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Whatever you need to do-please don't give up.
There is hope for us chronic lyme.
Even if we get to 70%,
That's still awesome. Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
There must be something else going on, I'm thinking....
As another poster mentioned - yeast could be an issue.
Also could be parasites, mold, etc.
Do you detox? That is vital to our wellbeing.
I agree please don't give up! Sounds like you found a better dr. for you, too.
Posts: 1761 | From USA | Registered: May 2006
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I don't blame you for being frustrated. I would be too after 4 years on antibiotics and want to try something else.
I wasn't progressing quickly on oral antibiotics. My doc has me doing IM bicillin LA and I started to notice big improvement after that.
The leader of my support group didn't progress on orals either. It wasn't until her 7 month on IV rocephin that she saw progress.
Hang in there. I'm allergic to 1/2 the things the OP listed and probably wouldn't have progressed on just those either.
I'd get a second (third or even fourth) opinion.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Going off antibiotics that are not working is not "giving up."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I agree you should change doctors - not give up. You can get tested to see how bad the yeast is. Maybe that is a big part of it. Do you have a lot of yeast that you notice? Diflucan is the best drug for it and it is also effective against borellia.
You might have protomyxzoa. It can cause a lot of body pain but it usually causes insomnia and you are sleeping 12 hours a day. That would eliminate bartonella too.
Borellia pain is usually one sided and it often migrates so if your pain is all over, it might be something else. Babesia pain is usually in the large muscles like the thighs, buttocks and back. I got bad cramps with it. Protomxzoa pain is in the bones, joints and muscles. It can also cause stabbing nerve pain.
Sometimes doctors leap to conclusions or follow recipes. I went to one that told me she always treats "lyme " first. She refused to address the fact that I had treated borellia and was experiencing bartonella with babesia emerging. What she gave me was worthless.
-------------------- 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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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I agree Lymetoo.
Those antibiotics tried barely touched what is available though for chronic lyme.
By giving up, I meant, accepting chronic and not treating anymore. Period. (abx, herbs, rife etc)
I had zero results from some of the abx on that list as well, but my doc kept trying until we found the ones that work.
If we didn't, I would have went to rife, I think Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Im on my 3 1/2 yr mark on abx. I know how you feel. Taking a break to treat yeast and I'm going to do a phone consult with a ZYTO. Hopefully get some answers from a different kind of testing.
Hope you do too!!!
Posts: 908 | From Albany | Registered: Nov 2008
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Jlcd1- what's ZYTO?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Do not overlook mold. This is why many people remain sick.
Posts: 845 | From Northeast | Registered: May 2011
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Just have to add- I had plateaud and still had fatigue twitching and muscle aches. I went off abx, and everything got worse.
My LLMD thought maybe it was yeast..but diflucan didn't help. I was ready to give up. Then we tried sporanox and herbals for yeast...holy moly. I thought I was in major relapse.
Now I realize it was yeast...after a month of horrible herxing, my twitching went away, and I've had some normal days.
I never believed yeast could cause such a problem Posts: 1276 | From maryland | Registered: Jan 2009
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
PARASITES are the missing link. ABX does not address them.
If you are looking for new protocols, send me a pm. I can give you great info about a protocol that kills lyme and parasites and bacteria and candida and viruses....
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
It's a kind of ART testing done by a Dr. K trained practitioner that you can do over the phone, using the ZYTO hand cradle. I don't know too much about it yet, my first appointment is next friday.
Seems pretty awesome and the guy who does it works very closely with Dr. K I guess. From what I hear.
Posts: 908 | From Albany | Registered: Nov 2008
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
No offense to Dr. K, but I am highly suspect of any kind of energetic testing done over the phone--no matter what kind of cradle.
I believe accurate energetic testing has to be done in person.
Have you tried photon therapy. There is a good thread on that and it has helped many.
However, I would kill yeast and parasites first.
This is just my opinion.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8879 | From Illinois | Registered: Aug 2004
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
jlcd-neat! can't wait to hear how it goes Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Thanks Greta and I know I am skeptical as well as excited to see how it turns out. Its not too expensive $120 so thats why I'm going through with it.
Im treating parasites now with just salt c and actually seeing huge worms. Wish I knew how to post a pic on here.
Posts: 908 | From Albany | Registered: Nov 2008
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Catgirl
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Member # 31149
posted
I'm with Tick battler, go after parasites (key).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Perhaps it is time to look at other causes than Lyme. Yeast, foodallergies and sensitivities, leaky gut, thyroid, adrenals etc. To keep going after Lyme with antibiotics when Lyme may in fact not be what is now in the for front could be making your symptoms worse.
Posts: 1748 | From United States | Registered: Dec 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
RC1 is right, mold is another one to look for (along with parasites). All the abx in the world won't fix it with these two going unaddressed.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
zyto is a type of EDS testing (electrodermal screening). I believe it can be done via distance so long as the zyto machine can test you. I don't know much about it but it's different from the other EDS testing machines since no practitioner skill is involved in the testing - I think you put your hand in the cradle and it tests your acupuncture meridians automatically. The other EDS machines use a probe that touches your meridians on your fingers and sometimes toes. Both can find out which infections your have in different parts of your body. Similar to muscle testing. Just another form of energetic testing. I actually like it better than muscle testing. It has helped us so much in this journey.
Please let us know how it goes!
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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