Topic: I'm now on 6 Meds and Tolerating, How is this, when I couldn't before ?
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Here is what I'm currently doing:
IV Rocephin daily IV Z-max daily IV Flagyl daily Mepron 2 x day Plaquenil 2 x day Artemisinin 2 x day
I've had 5 days of everything the way it is above without any problem. Prior to the current changes, I was only doing:
IV Rocephin daily IV Z-max every other day Mepron 1/2 tsp daily
My Dr. thought I was ready to dive in and knock this cr*p out.
I must admit, the new regimen is giving me some stomach upset and very loose stool, but I am not Herxing the way I was before.
No headaches, Nervous system is not going bezerk, No crying.
Anxiety is kind of up and I'm a bit irritable during the day. I'm sleeping better than ever and not waking up so crazy.
What I don't get is that I had to stop IV Flagyl just 3 weeks ago b/c of Severe headache, anxiety, and crying. I'm only having some Anxiety that is mild now. How is this ? The Mepron made me nuts too and I had to back down to 1/2 tsp. but now I can handle the full dose. How is this ?
Does this mean I'm getting over the hill, or am I creating a Sunami that hasn't hit land yet ?
Something else I've noticed. The Mepron makes me feel a little Euphoric. I can't explain it except it feels like I've taken a nice tranquilizer about 30 min. after I dose. I can't find any old post with this. The Mepron also makes my heart rate come down to Normal and even a little low as in the 50's. Havn't seen this since prior to being told I had POTS.
Appreciate any thoughts.... Oh and I am getting out now everyday, just have to be close to a bathroom :-)
** edited to removed dosage details **
[ 07-09-2010, 12:36 PM: Message edited by: sixgoofykids ]
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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massman
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posted
Praying for your liver and your intestines.
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posted
Perhaps some of the anxiety symptoms were from herxes.This often happens in treatment ,where symptoms and die off seem similar.
Are you doing anything to help your body detox from the herxes?Clay, chlorella etc? and you should be taking high doses of probiotics
.Antibiotics will kill everything, including good gut flora or will throw off the balance of the flora in your gut.Probiotics such as acidolphillus will help restore the balance in the gut and hopefully relieve the diarrhea issues.
You should take them two hours before and two hours after your doses of antibiotics.You would be wise to search for a product that has 12 to 20 billion units of acidolphillus in a capsule
You can also take pectin.This will act both as a toxin binder to absorb toxins from herxes and it will help firm up stools
mepron/zith is a combination that goes after babesia as is artemesia and plaquenil.It is found that taking artemesia with grapefruit juice, and alpha lipoic acid helps activate the artemesia to make it work better Plaquenil is also an immune system modulator.It may stop you from herxing
Remember that lyme has a replication cycle of around 4 to 6 weeks, so you may only get herxes once a month after being on the antibiotics for a while.
the other thing to be aware of is that long term antibiotic use may throw the lyme bacteria into cyst form to protect itself from being killed by antibiotics and so you may have less symptoms because the bacteria is in a dormant state
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I'm on Florastor and P-Biotic w 20 Billion good bacteria.
I thought the Flagyl I'm taking is supposed to break up the Cysts. So anything I'm pushing into Cyst form should be handled by the Flagyl.
I also read the Plaquenil changes PH and makes the meds work better.
I'm having bloodwork every 2 weeks and everything is o.k. thus far. I'm not turning yellow either :-)
I just don't understand how I was going crazy on these same meds just a few weeks ago and now I'm not. I don't feel well by any means on the abx, but I don't feel deathly ill either.
My anxiety is the biggest issue for me, but even that isn't as bad as it has been.
Perhaps some immodium for the stool problem. Pepto doesn't do it.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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massman
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posted
Bloodwork for liver stress is not too accurate.
So even if the blood says it is OK it really may be highly swtressed.
And oh, your liver is your most important organ.
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BackinStOlaf
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Member # 23725
posted
Massman: so how do you know you are safely taking meds? you wait until it is too late?
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Every organ I can think of is imperative to health and life. Keeping the Liver healthy is very important, but so are the kidneys, heart, brain, etc.
Exercise, eating well, etc. is all important.
I don't know how you test for Liver Stress either. If the liver is being stressed, your numbers should be elevated. This is what I know as an RN. Even so, you keep treating right ?
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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nenet
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Member # 13174
posted
Are you taking Actigall? I recall reading here many times that is was very important to be on that when on IV Rocephin, to protect and support your gallbladder.
IV Roceph can be very hard on the gallbladder.
Just a heads-up in case you weren't already aware.
You should also let your LLMD (and other docs if applicable) be aware of the stomach and loose stool problems. Best to not let c. difficile get a hold, and loose stools can be a sign of that.
Someone mentioned grapefruit juice as a potentiator for certain drugs. Please check with your LLMD etc. before using grapefruit, as it can interfere with many prescriptions.
I'm very glad to hear you are seeing some modest improvements finally!
posted
Maybe you've just found a combo that works for you. I did best on a heavy dosage of meds.
I herxed on a similar protocol on day 24, so you still may herx.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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massman
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posted
Keep treating ? Wouldn't that be further stressing an already stressed organ ? Wouldn't that be like beating a tired horse ?
There are different ways to assess organ function. EDS or Electrodermal Screening evaluates stress through acupuncture points related to specific organs. Some organs, like the liver, can be palpated (felt) for inflammation, tenderness, and hard spots.
Symptom surveys can be done for specific organs.
Yes ALL organs are important BUT some like the liver are more important. What specific organ, if half of it is removed, will grow back ? Yup, liver, liver, liver. No other organs will do that. Hmmmm.....
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lymetwister
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Member # 19590
posted
Massman, you've lost me. Hopefully this won't happen, but if my Liver enzymes get high than I will have to reassess things with my Dr.
For once in this entire disease, I don't feel like I am being stressed. Still symptomatic, but not struggling to hang on like I was / had been.
Not sure how we got into this liver discussion.
The body is being stressed by the Lyme & Co. and the treatment. If you don't treat, then you don't get better.
I only wanted to know why IV Flagyl 500mg was killing me and I had to stop after 5 doses and now, I'm toleratiing it just fine.
The same with Mepron and now tolerating it again, just fine. I added Artiminisin 200mg 2 x day and Plaquenil and I don't feel sick from it, nor do I feel like I am Herxing.
My anxiety is up and I'm irritable. These are my two worst symptoms since diving into this all out treatment.
Other symptoms persist, but are tolerable and I do feel like I am living. I am getting out and doing things again.
I'm not complaining by any means, just trying to figure this all out.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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massman
Unregistered
posted
All those drugs stress your liver A LOT.
Liver enzyme test SUCKS.
LIVER IS MOST IMPORTANT ORGAN IN YOUR BODY. This is proved by liver can actually REGROW
Lack or reduction of symptoms may not mean you are REALLY getting better.
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kidsgotlyme
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Member # 23691
posted
Gary,
It seems like something is finally working for you. I'm so happy for you. I know you have been through so much.
I hope things keep going well for you so you can get on with life!!
God bless!!
Christie
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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MariaA
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Member # 9128
posted
Hey Lymetwister, I'm not on IV antibiotics but I'm in a similar boat as you- was on lots of antibiotics this spring, had lots of side effects and herx issues, and now I suddenly turned a corner and it's all tolerable (incidentally our LLMD- I go to the same one as you- backed me down from some of my meds when I was having a lot of side effects. I have since then added them back in without telling him (yet) because I could tell that I could tolerate them).
I think it's just part of what sometimes happens with Lyme treatment- you have an easier time tolerating meds when your body is doing better. I wouldn't worry about the tsunami.
-------------------- Symptom Free!!! Thank you all!!!!
lymetwister
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Member # 19590
posted
Thanks Maria.. :-;
Massman, I'm not getting your posts. Assuming your correct about the liver being the most important organ, are you suggesting you don't treat b/c of this.
Again, the heart, lungs, brain, liver, etc. are all essential organs. Just because one regrows doesn't make it more important. Lung cancer patients can live with one lung. Dialysis patients go on without kidneys.
I'm missing something in your posts, or maybe I'm not
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Pinelady
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Member # 18524
posted
It would not hurt you to double up on probiotics.
I take Prescription Creon and if I was doing all you are I would not hesitate to.
You may want to try the Cholestyramine also to pull the poisons. I love it.
Good Luck=hope it kicks the bugs butt.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Sounds to me like maybe you've knocked the bugs back a bit and you've found a combination that works. Great to hear!
My husband did heavy combos of IV antibiotics without destroying his liver. He did take NAC and milk thistle though. Also undertreated Lyme and coinfections were extremely toxic for him worse than any side effects of the antibiotics.
Posts: 984 | From San Diego | Registered: Nov 2006
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massman
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posted
The most important of ALL the essential organs is the liver.
Haven't you seen posts here about docs stopping treatment because liver enzymes were really high ?
Guess we went to different schools. Did you know that chiro college has more hours than med school ?
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sutherngrl
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Member # 16270
posted
Gary, I'm not getting Massman's point either. I mean you have to treat LD, no question about that. I mean whats the other alternative, stay sick the rest of your life, or worse. Keeping a check on your liver enzymes is the best you can do.
Glad you are able to handle all your meds and hope this gives you a speedy recovery!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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lymetwister
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Member # 19590
posted
Thx Sutherngrl,
I was beginning to think I was really missing something.
I'm not having Liver problems, so not sure why the emphasis keeps being made.
I will keep focused on all of my organs while I treat. Plaquenil can cause vision problems. Z-max can cause problems with the ears. Yada Yada Yada....
I could see the excessive posting about the Liver had I said I was having Liver problems or turning yellow, but none of this is the case.
IV's are Dripping now... ahhhhhhhhh
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sutherngrl
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Member # 16270
posted
I don't think ppl aren't taking the liver serious. We all know the risk of treatment and do what we can to avoid them as much as is possible. But to some of us the benefit of treatment outweighs the risk, since killing the ketes is the only way to get well.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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kidsgotlyme
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Member # 23691
posted
Massman, why are being so sarcastic?? People are just trying to do the best they can to get well.
If my chiropractor had your attitude, I would never go back. Fortunately, she understands that you have to do something, like TAKE ANTIBIOTICS, to get better.
If you don't agree with Gary's treatment, that's ok, but...geez...leave the man alone.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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massman
Unregistered
posted
My whole concern, as I stated in plain language, was overstressing the liver. Others kept posting that they did not understand me.
seekhelp
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Member # 15067
posted
Massman, if you have no life anyway, what's the risk? Gary was living in torture based on his posts. Would you really bet your LIFE on an EDS machine? Seriously?
I see your point about stress and I can't imagine that wild combo doesn't come with big risks. That's a LOT of drugs.
I personally am starting to believe these damn bugs don't go down unless WWIII exists. Well, maybe with AI therapy. Are you doing that?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Pine lady what is creon by prescription? Thanks.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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springshowers
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Member # 19863
posted
Gary This is what happened to me. I could not toleration anything orally and I started The IV with INtegrative supports though and IV Ozone and UVB and Nutritional and LOTS OF DETOX>. And then. I ended up close to what your doing. IV FLagyl Daly 750 2x aday and The IV Zith and IV Rochephine and IV doxy and Mepron and and and... Plaquennil and Minocycline and then.
Bamb it all started to work. But after 6 months my body gave the signal it was enough. I pushed it ot the limit and I had no life before so.. so what.. ya know. 10 years of no progress and ready to give it all up.
It is what turned the whole corner. Not to say I did not get sick and get sepsis and could have died too.. I mean it is risky.
But I say do what you feel is right.
Make sure to DETOX> do enemas and Baths and Foot baths and Water and lemons and Welchol or Clay or whatever you can fit in to detox.
Even rife if you have one did wonders for me. Then now to insure no regression I use rife.
Off abx and doing well.
I posted a post about stress only because I had a few weeks of family issues and was having a hard time keeping my body in balance through it but its getting better and better as I try to at least remain closer to home and my own environment and support from affair instead of in other peoples environments.
Anyway..
Good For you because i remember having the same AH Ha moment and saying OH THis iS HOW A HERX IS SUPPOSED TO FEEL>>
LIKE A NORMAL HERx where you FEEL Worse and CLEAR IT OUT and then FEEL BETTER and then do that again in layers and each time feeling better and then it keeps going after you stop the abx or reduce them down or taper them or whatever you doctor prescribes.
Its quite a liberating feeling and Do not let people discourage you.
Easy for some others to make it sound so simple as you should do this or that but only you know what you can or want to do and how you feel..
I know whats its like to feel like its over or useless and there is not going to be a life anymore.
At some point you have to take risks and go it and if you are handling it it may just take you through the wall I always talk aboiut.
Good Luck And Good For you...
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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Hoosiers51
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Member # 15759
posted
I wonder if it's because it is summer.
I normally am much better in the summer. So I am having similar effects as you guys (lymetwister and Maria). Though I am not GREAT, I am definitely feeling improved lately.
I don't know if it's more Vit D, or if it's just something with the position of the Earth and the sun.....whatever it is, it helps me.
Posts: 4590 | From Midwest | Registered: Jun 2008
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MariaA
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posted
Well, I was certainly not doing well last summer. I do think there's a lot to Vitamin D and all that, of course.
-------------------- Symptom Free!!! Thank you all!!!!
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Its a prescription probiotic. It has kept my tummy and pipes good for 17mths now.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Thank you. I guess that would be good for me bc of antibiotics, crohns, etc. I will mention it to my dr.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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My guess is that your brain inflammation has improved with the IV Rocephin and also your overall body burden of infections is coming down. I also think treating multiple infections at the same time is key as well.
Hubby never could tolerate multiple antibiotics until he got rid of his babesia.
Great to see you doing better, but please be vigilant as to any worsening of symptoms -- hubby just spent a week in the hospital. Very low dose Tindamax did him in and he had been relatively stable for the last 9 months. Will post more details in another thread.
Unfortunately with these illnesses, things can get totally out of control very quickly -- especially for those patients with mainly neuro symptoms.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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