Topic: The lessor of two evils - my experiment on cutting back on abx
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
2 years I have gone full force on abx 2 or more at one time never missed one day in 2 years and living in hell to be honest. I had good days that were very good, but the bad are very bad.
I decided to take my abx down a notch to see if I felt any better, I never went off but settled at very minimal levels of just one oral.
2 weeks now and it is funny, my neuropathy is almost non-existent (it comes and goes mildly) on more abx my neuropathy is very bad most of the time.
I am in pain, but I have more "normal" pain, more describable pain. It is widespread still and still not good, it is a "different" pain TOTALLY than when on more abx -- just more easy to describe.
On abx I feel neuro pain, indescribable sensations, cognitive brain fog, word searching, emotional roller coaster, severe widespread pain.
Things that aren't as bad..neuro pain is nearly non-existent, WEIRD I am use to living with neuro pain daily, cognitively I am clear as a bell,this feels great to have normal emotions and clear thinking.
But I have proven I am not close to being finished w/treatment - pain is there always, but manageable on mono therapy and I feel more "aches and pains" rather than full on excruciating pain, like I am plugged into an electrical outlet. Fatigue is MUCH worse on low doses but my sleeping is VERY deep and long. Very restful sleep on mono therapy.
I truly believe I have been in a 2 year herx.
I guess my experiment has proved I have actually improved, before treatment I felt a thousand times worse than this.
This I would describe as chronic fatigue with fibrous tissue aches and pains - where as higher doses I would describe as excruciating, unbearable and so much nerve pain.
I think its time to take it back up...so hard, but I am nowhere near well yet I know that. Bummer...
posted
Why take it back up when you're doing better??
Yep, a two year herx is quite possible!
Progress... ah, progress!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymeHerx001
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Member # 6215
posted
I did the same thing with my Biaxin. In fact I tried to go off about 4 times.
The first time I tried to go off was the summer after I got the damn chemical sensitivity and vertigo from it (or the herx)
That summer was terrible. I was off it for 2 months and nothing improved.
I had much more neuropathy when I went back on it at first.
The last time I tried to go off it was this past winter. I made it about 6 months of no Biaxin and just Flagyl.
I finnally gave in because I wasnt able to move my legs, also my feet hurt like they were in a VICE!!!!!!!!
When I went back on the Biaxin I herxed alot and then felt a ton better!
How the heck can one still be herxing and then feeling better with the same antibiotic 4 years later.
Also how come when I went off it, my vertigo and chemical sensitivites did not abate at all!!!!
I did notice however that when I go back on the biaxin that my sinuses dry up and I will have episodes where (if I take too much) where even normal scents give me migraines!
Imagine that all you ducks!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Answer my questions ducks~~!
I still say that the government should be paying me for expirimenting with my health and with their bio-engeniered super strain spyrochetes.
Thats right, I should have a paycheck in my mail box for being a test subject.
Call me parinoid or call me crazy but please do call my physically sick! Posts: 2905 | From New England | Registered: Sep 2004
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daise
Unregistered
posted
Lymebytes,
I wish you the best!
TuTu,
quote: You wrote:
Yep, a two year herx is quite possible!
Full two years? Ugghh ... I hadn't realized. Boy am I lucky.
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Lymetoo - am I doing any good though on just one abx? So early it was drilled into my head "herxing hard is good", but you know I read about your doctor saying "the turtle wins the race". IF it were possible to get well on this low dose - I'd continue, I just don't know if it is.
Lymeherx - Biaxin is the drug I stayed on through this experiment. I wonder if I went off it, if my neuropathy would return? Although it seems to return w/other abx.
quote:I still say that the government should be paying me for expirimenting with my health and with their bio-engeniered super strain spyrochetes. Thats right, I should have a paycheck in my mail box for being a test subject.
I COULDN'T agree more!!!
Daise - Before I started treatment I had so much pain, there was no more room for pain OR SO I THOUGHT!! I absolutely believe as soon as I ramp back up and add another abx I will be back into my steady herx...can't wait The fatigue I feel is almost like a "stoned" feeling. I am so fatigued since stopping the other abx..my body is probably saying "wow, not as much agony, time to sleep now instead of fight". I mean I feel hammered w/fatigue..when I never felt that way on full/multi abx...strange...no its the ehrlichia I can't get rid of.
How is that possible to herx this long on abx? How can we herx and herx and herx and herx...I mean hadn't I dropped it down a few notches, I wouldn't know how I felt off (or nearly off, very low) abx! If I am to remain on abx until I am symptom free and that is determined by staying on abx...I have a loooonnnggg way to go!!
Some virulent, insane bacteria's we are dealing with! Wow!
Sometimes it's hard to know what to do. I know what you mean, yet I haven't had anywhere near the level of prolonged herx that you've had.
What I know is that antibiotics work in partnership with our immune system.
I'm sorry, I don't remember if we've had a converstation about this, so I'll go ahead.
1.) High or low cortisol means our immune system will work poorly. Cortisol is a hormone produced by the adrenals. Lyme can be hard on the adrenals.
High or low cortisol directly affects our cells.
I imagine living with horrible herxes for so very long can also be hard on the adrenals.
2.) Hypothyroidism is important as it affects every cell in our bodies from the tip of our heads, clear down to our big, right toe.
Important: It needs to be treated optimally, especially with a disease and most especially with Lyme/TBI's.
One of the symptoms of hypothyroidism is infections, as when you are low thyroid, that affects your immune system.
Lyme can attack the thyroid.
3.) PCOS--a disease of insulin resistance (of females.) It puts our cells in chaos, for a number of reasons--so how can we effectively fight Lyme/TBI's?
PCOS has been called the mother of all hormone illnesses.
PCOS is a direct cause of diabetes.
4.) Having sex homones out of balance affects our cells.
All of the above are hormones, all affect our cells where Lyme cysts reside, and all affect our immune system. Antibiotics must work in partnership with a working immune system.
Hope that helps.
Also, how is your GI tract? What I'm getting at, is any aches or pains or disturbances?
Maybe you know about all of this. I'm sorry. Thought I'd mention it. Well ... it's here for the newbies!
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
lymebytes I feel as you do.
With abx I feel bad and without I feel worse!
Posts: 2905 | From New England | Registered: Sep 2004
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Interesting. I have just read CURE UKNOWN, by Pam Weintraub...Excellent by the way.
Here is how she cured her Lyme after many, many years of treating. She was told to treat this way by Dr. Burrascano as it was the way that he cured his own infection w/Lyme.
They took Ceftin until they were feeling relatively good and tghen went off. They allowed Lyme to relapse in full force.....not just little symptoms, but send you to the bed symptoms.
They would then go back on Ceftin and begin to feel better and go off again until Lyme symptoms returned full force.
They did this (3) times and after the third time symptoms did not return.
Same drug used w/EVERY re-treatment. Monotherapy only.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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just wanted to add really that (after 10 years undiagnosed) the first 20 months of treatment were one long herx for me, never-ending.. I couldnt understand when i heard people saying that herxes would just last a few days etc as i felt like my body was full of toxins, etc all the time. I tried a month off about a year into treatment after being on IV Rocephin for 5 months and relapsed completely, within days of stopping the antibiotcs. now though, i had to stop antibiotics again 20 months in because of stomach problems and unlike last time the symptoms did not come back. after a few weeks off the abx i started a herbal protocol and have been doing really well. I guess my point is that it will stop eventually, it just seems like it never will!! A few things that helped me over the last few months (and i believe are a big part of my improvement) to deal with all the toxins and give me energy were epsom salt baths (I actually had a lump under my arm from, i believe, lymph toxin build-up and they got rid of it) and D-Ribose. the D-ribose has really imrproved my energy levels and that seems to make all the herxing easier.
I hope you find ur way soon and get to feel better. I really sympathise with what ur going through as i felt like i would never improve, it just seemed like the herxing would go on forever and now, over the last few months i am herxing so much less and have so much more energy. am even planning on working full-time soon as i get a position. hang in there, you will get to feel better, hopefully its just around the corner!
Posts: 45 | From PA | Registered: May 2008
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posted
I think you've found your answer, but if you continue on one abx at a time, you'll also know if that is not working.
If you continue to feel better, you'll know it's OK. I never took two abx at the same time!...except flagyl and whatever I took it with.
I got well 4 yrs ago and all this really heavy dosing has been in the last 4 yrs. ( though some were doing it before then, I'm sure )
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Daise - thank you. I have had all my hormones tested (possibly all) cortisol runs normally, DHEA was one point off and I can FEEL how this run with hormones...it is crazy. Thank you for your input. Oh, yes thyroid...all good. Isn't it strange all fairly basic tests are normal tests for viral, lyme and ehrlichia still showing positive. Very appreciated!
Feelfit - This is so IRONIC! At my forum a woman who just read this book is really emphatic how important it is to read. She mentioned that Burrascano and the author did 3 treatments, she didn't say which drug. OF COURSE I am allergic (or was years ago, mild reaction) to the cephalosporins. Did they mention any other abx that could be used? AND were they co-infected? I gotta get this book...this is a sign ..you are the second to mention this! Funny that Burrascano used this method, I wonder if he was experimenting on himself??? Hope they go into great detail, I SO much want to know more about this "cure" they used. Wow! Thanks.
Lymeherx - I know - isn't this crazy? I am so sick of it, I can't express it here....it would be a rant!
Lymetoo - You never used more than one abx at a time? WOW!! See when I walked into the lyme world 2 years ago, I will never forget the first forum I joined - everyone cheering me on that I was herxing to the death, I do mean to the death! I kept thinking, this will end soon and I will feel GREAT! Yeah right...never happened. So after 18 months+ of this brainwashing, that is when I did some research, questioned people here and learned herxing is not good...I started to understand much better what happens in the body when herxing occurs, it ain't good! (Yes, I know improper English) So...I started to do dual therapy at lower doses, more tolerable herxing. Interesting you should mention I will know if this oral is working...I am more confused now that ever about it! I felt AWFUL this morning and better after I took it..but I don't know if that was coincendence or because I had to take something for pain about an hour later - my pain was very high today - so I think I am going to do a Bicillin shot today. I love your LLMD...I like his thinking and you got well after years of being sick. How many different abx did you do before Flagyl and was it Flagyl that got you well in the end? Your LLMD said he has had people "sliver" flagyl 4 days per week and get well! Love it.
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Pam Weintraub was co-infected w/ babesia and Erlichia (I think). I would have to go back and look for the Erlichia to be 100 percent...
But Babesia for sure.
Burscanno...don't know about co's, it did not mention any.
The book is awesome, for me the best that I have yet to read....or rather, read yet.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Feelfit - I just ordered the book...I am convinced I need to read it, can't wait to get it now. Thanks for bringing this up.
I wonder why they chose that specfic abx...isn't it only a lyme killer?
If you think about it, it makes sense! If you treat and relapse - then the spirochetes come out of cyst form and are active again and then get hit again. I seriously have wondered if pulsing month to month - one month on abx - one month off- would kill it.
And even more interesting - babesia resolved in her??? My LLMD thinks that if the lyme load is lowered, your immune system can kick the co-infections - later Burrascano said pretty much the same thing in the video Bartonella - a clinicians viewpoint.
Again..thanks, I am excited about reading this book.
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
A friend who used to post here did 18 months of various antibiotics via picc line all in a row. He felt terrible and had many more symptoms cognitively while on the drugs. Now that he is off them he has been free from all symptoms for several years except a bit of arthritic pain. So, it does make me wonder how much the drugs do affect the brain.
I like the idea of taking breaks or using monotherapy if one is doing antibiotics.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8887 | From Illinois | Registered: Aug 2004
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
considering Bb's reproductive cycle, to me, it makes more sense to pulse abx. It seems that our systems are being totally saturated w/abx even though Bb may not be active at the time.
Also, giving our bodies and immune systems a break and time to recover and act as they were meant to.
Just my 2. I am not pulsing, but would prefer to....just makes more sense to me.
Lymebytes, money well spent, hope that it arrives soon.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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The fatigue I feel is almost like a "stoned" feeling. I am so fatigued since stopping the other abx..my body is probably saying "wow, not as much agony, time to sleep now instead of fight". I mean I feel hammered w/fatigue..when I never felt that way on full/multi abx...strange...no its the ehrlichia I can't get rid of.![[kiss]](graemlins/kissing.gif)
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