posted
True- it seems like everyone dealing with these illnesses is a walking experiment. No healthy person truly understands what this is like. Gets frustrating when you feel alone in this.
Posts: 95 | From new york | Registered: Jan 2012
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posted
True- it seems like everyone dealing with these illnesses is a walking experiment. So frustrating that there in not one solution for all the problems that go along with this.
Posts: 95 | From new york | Registered: Jan 2012
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posted
It's probably worth stating twice...wish the healthy people and doctors would see it!
Posts: 539 | From NW Arkansas | Registered: May 2003
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I had a sudden onset Bartonella herx last night. This has never happened to me before. Normally symptoms build up slowly. Last night I went from normal to feeling awful in the space of three minutes.
The symptoms were all neurological, and it was the worst Bart herx I’ve ever experienced. The level of physical agitation was incredible. I simply couldn’t sit still.
I’ve never herxed like that before.
For lack of a better option I went to bed, and I was able to pass out, waking up 11 hours later.
Today I’m experiencing a similar symptoms. Albeit slightly less severe.
Many patients have reported a spike in their symptoms around day 12, and around day 22. So this matches the other case reports.
[ 08-23-2019, 06:34 PM: Message edited by: Charles12 ]
Posts: 146 | From Virginia | Registered: Mar 2010
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posted
Took my first dose this morning, 125 mg. Didn't drop dead. I felt some muscle twitching after a few hours in places that I normally don't get them, which I do when I herx. A little sleepy also.
I plan on taking another 125mg on Monday.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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quote:Originally posted by mariel21: Oh God- feel better.
Thank you Mariel.
I’m feeling better today.
Posts: 146 | From Virginia | Registered: Mar 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I just discovered your posts about this drug and I am astonished it is working so well for those of you using it.
I have been sick for 13 years, fooling myself for five of them that feeling the way, I do was just getting old.
Now I really want to try it!!
-------------------- 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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quote:Originally posted by nefferdun: I have been sick for 13 years, fooling myself for five of them that feeling the way, I do was just getting old.
You’re sick for so long, you forget what normal is like.
I’m on day twenty something, and it feels like I’ve gotten my brain back. I do have some strange and unusual herxes though. And my evening routine is, come back from work, and go to sleep. I feel awfully tired.
But this is far and away the most effective drug I’ve taken. My brain has never been this clear.
Posts: 146 | From Virginia | Registered: Mar 2010
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posted
I decided to take my second 125mg dose this morning instead of waiting til Monday. Feel tired and neck has become stiffer than usual.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
Getting your brain back is one of the most encouraging reasons to take this. When you say clear do you mean feeling connected to reality or memory getting better? Can you specify as it would help me.Thank you.
Posts: 95 | From new york | Registered: Jan 2012
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quote:Originally posted by mariel21: Getting your brain back is one of the most encouraging reasons to take this. When you say clear do you mean feeling connected to reality or memory getting better? Can you specify as it would help me.Thank you.
Well, I'm funny again, I do think faster, and my memory i better. But most of all, I just feel like myself. My old personality has reemerged. It's been really cool.
I realize I keep on saying this, but I think we should all be on Atabuse, yesterday.
I tried Dapsone, and it helped with my inflammation. But that was it, and I realized very soon that was all I was getting, a potent anti inflammatory.
With this, this has been different. The brain fog is gone, and I guess I'm the person I was before I got sick? Brain wise at least? That's incredible.
I do appear to be in some kind of herx cycle though. Currently it's the running nose phase, which means I'm due for another round of eye pain shortly.
It is absolutely worth it though.
Posts: 146 | From Virginia | Registered: Mar 2010
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posted
I woke up this morning with a runny nose and some eye pain. Also some muscle soreness and stiffness which surprised me since I haven't done anything physical that might otherwise cause this.
Also had some anxiety last night for a few hours. I am in this for the long haul, but I know I am going to be in for some rough days with this drug due to the herxing.
I have read some accounts of people having success with this drug at low doses (below 500mg a day), and that might be the route I have to take after seeing what 125mg has made me feel like.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
I made a list of the Sx and tagged them as Existing, Existing Exacerbated, Old Reactivated and New. Existing I don't pay attention to. Existing Exacerbated and Old Reactivated I think of as a legitimate Herx. New is probably a side effect of the drug. Not a perfect system but it works well enough for me.
Most of the current Sx are in the Herx category. I have a couple of new Sx such as increased appetite and depressed mood which I think are side effects of the drug.
Posts: 539 | From NW Arkansas | Registered: May 2003
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good, good, good!
I've just added this link to the Treating Lyme website in hopes it will help others.
On there already are notes I've taken from some patient advocates and Lyme treating doctors too.
Maybe something you'd like to know or that can help you is on there?
The posts are sometimes spread apart, so to not miss something please scroll down even if you think it is the end of the page.
JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
Anybody home? I have had trouble posting, sorry for the delay. I honestly do not know if my symptoms are the same as before I started with this protocol. However, whatever is happening has me rehearsing for a new Zombie movie. Bad neck pain (but I do have horrible cervical arthritis), muscles twitching like I am a crazy man, napping every 30 seconds, sleeping LONG hours. Body temperature fluctuating through the night, etc. Other that those issues, a lovely day in the neighborhood. Still looking for that damn tick that bit me... 25 years ago.
Oh yes, I upped my dosage to 375 from 250...(started with 125 over a month ago. I have taken a few 3 day breaks as well. Did they help? Have no idea.
TINNY! So good to see you and your cup are still around! I miss you all!
Peace, Love, and Wellness JRW
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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posted
I have only taken 3 pills three days apart, 125mg each time, and I also feel like a zombie. I am having a stiff neck with pain, stiff and sore muscles, incredible fatigue, muscle twitching, and pounding headaches. My body just feels heavy, like I am carrying a hundred pounds around on my back whenever I walk. As noted by Digby above, I too am having a depressed mood with this drug.
All of which I take as a good sign that I am stirring up these trailer trash free loading spirochetes that have been squatting in my body for way way way too long.
It's me or the keets now, I am in this til one of us is no more. The party is over for those buggers one way or another.
I am not taking any other drugs, but I am drinking 4 to 6 cups of decaf green tea a day. I have read that green tea has compounds that are antimicrobial as well as reading published research that says green tea enhances the effectiveness of certain antibiotics.
With the way I feel, I have no idea how I would ever be able to tolerate 500mg of this stuff. Right now I am taking encouragement from a LLMD comment in the link on Disulfiram Treatment that Tincup posted above:
"LLMD Comment
I have heard from several who have used DSM.
All have had to start on tiny doses, and because it has a long half life, can start with twice a week!
Seems to take a VERY long time to be able to raise the dose- months!
But by the time they can tolerate a full dose, and maintain it for 6 weeks, they seem go into a full remission."
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
Wow- this is very encouraging. JR- it's good you can still maintain a sense of humor while going through this.
Posts: 95 | From new york | Registered: Jan 2012
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posted
I am dosing 125 mg every third day. I herx pretty badly on day 2 and by day 3 I am feeling better, when I dose again.
The process makes me think of people who go through chemo. The difference being chemo is seriously toxic, while DSM isn't. They both kill their respective targets, so the analogy helps me with staying positive through the worst of it. Maybe it will help someone else.
Posts: 539 | From NW Arkansas | Registered: May 2003
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quote:Originally posted by no_lyme_in_florida: I am having a stiff neck with pain, stiff and sore muscles, incredible fatigue, muscle twitching, and pounding headaches. My body just feels heavy, like I am carrying a hundred pounds around on my back whenever I walk. As noted by Digby above, I too am having a depressed mood with this drug. remission."
I also had a few days where I felt heavy. Perhaps two or three.
Regarding depression, I wonder if that's connected to Babesia die off? To make a connection. Are the Mepron Blues Mepron, or is it atovaquone hitting the Babesia?
Posts: 146 | From Virginia | Registered: Mar 2010
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JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
Mariel...the choice is either I laugh when possible, or walk in front of a bus... sooooo... I choose humor. Where are you in NY?
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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quote:Originally posted by no_lyme_in_florida: I am having a stiff neck with pain, stiff and sore muscles, incredible fatigue, muscle twitching, and pounding headaches. My body just feels heavy, like I am carrying a hundred pounds around on my back whenever I walk. As noted by Digby above, I too am having a depressed mood with this drug. remission."
I also had a few days where I felt heavy. Perhaps two or three.
Regarding depression, I wonder if that's connected to Babesia die off? To make a connection. Are the Mepron Blues Mepron, or is it atovaquone hitting the Babesia?
Right now I think the depression is mainly a side effect of the drug and also possibly part of the herxing. I have experienced drastic mood changes like this before when taking other antibiotics.
About ten years ago I took Malarone for 4 or 5 months, and afterwards my night sweats and dark urine stopped completely, so I have always been optimistic that I have cleared the babesia from my body. Those were two symptoms that my LLMD told me were consistent with Babesia.
One thing I will add, even with the bad herxing, I have had several hours each day when it lets up and I can almost remember what it felt like to be normal. The mental clarity and sense of calm during those times are something I haven't felt since maybe before getting bit. And those moments have been almost pure Heaven after being sick for so long.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
JR- in Connecticut now. Yes you are right. Thanks for making me laugh again!!!!!!!!!
Posts: 95 | From new york | Registered: Jan 2012
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JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
In CT? I was bitten in New Caanan. Upper class tick.
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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quote:Originally posted by DaveNJ: No Lyme where did you find that awesome , encouraging LLMD quote?
Dave
Dave, scroll up to the post by Tincup and click on her link. She has a page for Disulfiram Treatment and if you scroll to the bottom there are several LLMD quotes.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
Tincup, if you see this, I think the link you have on your Disulfiram Treatment page ... "LymeNet Post By Patients On The Disulfiram Protocol" is not working properly. It doesn't go to this thread but to another unrelated one. At least it does for me.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
Update... short one... I slept like a log last night... one that was facing a sawmill.. Actually I had really fun and vivid dreams... but they ended well. Ah yes... to quote the Greatful Dead... "What a looong, strange trip it's been..."
I am currently taking 375 mgs of disulfiram. I have been wondering... na... well... OK... should I take a break and give myself a chance to clear all the deletrius, or (since I sleepy well and had 90% Rotten Apple rated dreams, stay the course?
A Lymie's choice... to dose or not to dose.
And now there's this microplastics ting.. waddamWegonna doo?
As an aside, or front or back... did youze knows dat washin polyester, or other synthetic fabrics leads to microplastics leaching into the wadda and, because demo knuckleheads at do sewage plants not having filtration that can trap did stuff, letting this crap back into our rivers, stream, lakes, oceans and even puddles in da street? Gonna have to call for a meetin' wit da fife families again.. oh boy, Vinnie is gonna be pissed...
I am mostly vegan, but once in a while like a nice piece of wild salmon... or organic chicken breast... very rarely do I break my routine.
Peace, Love, and Wellness, JRW
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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posted
JR, I remembered seeing a comment somewhere where a LLMD recommended taking periodic breaks while taking this drug to give the body a rest and time to deal with the inflammation caused by the Herxheimer reactions, but right now I can't remember where I saw it.
I understand the desire to get better, though, and to keep with the treatment.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
I found this on the 'Disulfiram for Lyme' Facebook Group that Tincup has linked on her Disulfiram Treatment page.
It is a post from August 15:
"Dr. H. talks about Disulfiram for Lyme in this great podcast at minute 31 if u haven't heard it yet. He says it's now the number 1 drug regarding the strong herxheimer reactions, dapson is nr. 2!"
You can listen to the podcast of Dr. H at this link if you want:
posted
Major herxing for me as well. I am going to skip taking a dose over the weekend coming up to give my body a chance to recover a little.
I also don't want to be major herxing if Hurricane Dorian causes the power to go out for any extended period of time in my part of Florida.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
I have not taken a pill since last week, and probably will not for a few days more. The three pills (125mg) that I had taken three days apart gave me a herx like I had never had before.
This weekend was unbelievably miserable, all I did was lay in bed and hold my head to keep it from shaking. I slept like a baby last night, though, and woke up this morning feeling better.
I have decided not to push it, I am not going to try to go to fast and overwhelm my body with bad herxing. If I have to take 125mg once a week for 6 months , that is what I am going to do.
I have not been able to see my LLMD (Dr. C, Midwest) for many years due to financial and other reasons, but I have always remembered him telling me that the majority of his recovered patients told him the same thing..."low and slow was the way to go".
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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JRWagner
Frequent Contributor (1K+ posts)
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posted
Yikes.. I know what a disulfuram herx can do. Perhaps you can try halving the 125 three times a week?
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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This is not in itself usual. There have been periods over the last ten years where I've tried to keep up with it.
You can't get well without excercise
I remember being told that.
It was always painful though. I could never get enough air. And muscles, they felt leaden. My legs would often just dangle, spastically, from my body. I seemed to have little control over them. And so they would clang together as I ran. On the best days, I couldn't handle more than a mile or two, and I did them slowly.
This run was more than a little painful. I am out shape, and I was huffing and puffing. But there was something remarkable about yesterday.
It felt, it felt the way it used to. My legs worked, moving in unison with arms. My muscles. Breathing came easy. And when I finished, there was just that wonderful rush, that feeling of elation as endorphins coursed through me.
I can run again.
Posts: 146 | From Virginia | Registered: Mar 2010
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You too Posts: 146 | From Virginia | Registered: Mar 2010
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JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
JUST 500 mgs... yikes. I can't fathom taking that amount... wish I could. Some consider 125 mgs too much. We are the Guinea pigs indeed.
Hope you are cleared... the herxes are horrible.
I took 250 yesterday... staying awake is not easy... and sleeping too much is not good for your heart.
Lovely.
Peace, Love, and Wellness, JRW
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I ordered DSF which should be her in five days. I thought I was having a relapse of bartonella but the doc's nurse called yesterday to tell me I am "very positive" for Lyme Disease but not the co-infections.
That is surprising because one of my symptoms is sore soles of feet in the morning when I first get out of bed. Other than that my primary complaint is complete exhaustion.
I also get frequent headaches that are relieved by imetrex, but only imetrex. Does this sound like Lyme to you? I hope the DSF works on me.
The doc prescribed Bactrim which was making me nauseated so she cut that dose into a quarter and added Biaxin. I tried Biaxin years ago and could not tolerate it at all so I don't know if I will even pick it up.
I used Bactrim for 9 months in 2010, and then five more months in 2014, and I was not cured. In addition I was given Doxy, Biaxin, Zithro, Levaquin and Ketek plus Mepron, Malarone and Coartem for Babesia. That does not include all of the herbs - tons of them.
I believe whatever lived through those assaults are now resistant to to those drugs, so what is the point of taking them again and just killing off all of my gut flora, stressing my liver and giving me side effects.
I always get to a point where I cannot tolerate ABX and need a break. This time I could only take the Bactrim two weeks before it was making me vomit. It seems like a good idea to try the DFL before I can't tolerate any drugs again. So that is what I plan to do.
-------------------- 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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JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
Big problem... was in the shower earlier and started slight shaking in my entire body a d felt like I was getting Vertigo. I had to sit down in the shower... got out and basically collapsed on the bed.
Stopping antivuse. Neck is still and painful.
Be careful. Some of can could react to disulfuram alone... not sure if this was a herx.
posted
I would guess herx. You don't read about these symptoms with alcoholics.
Can you tell me what your pills look like? Out of curiosity?
Mine are white powder and say OP 706.
The bioavailability of DSF varies by manufacturer. I'm curious if that's a factor.
Or if it has more to do with bacteria load, the strain of bacteria, gender, and genetics.
Posts: 146 | From Virginia | Registered: Mar 2010
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posted
"The bioavailability of DSF varies by manufacturer."
Tacking on to this. There was a discussion in the Facebook group about the quality of the pills coming from different manufactures. Bioavailability varies wildly, and two pills of equal strength, may not actually be comparable. This may explain some of the different responses, and why some people are reacting more strongly than others.
The most bioavailable form of DSF is an effervescent tablet, think alka seltzer.
Posts: 146 | From Virginia | Registered: Mar 2010
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posted
My Antabuse is by Teva Pharma and are effervescent tablets. Maybe that is part of the reason why I had such a strong herx. I am also in a pretty bad way physically with my Lyme, not completely bedridden before treatment began but close.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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quote:Originally posted by no_lyme_in_florida: My Antabuse is by Teva Pharma and are effervescent tablets. Maybe that is part of the reason why I had such a strong herx.
Bloods levels were two to three times higher with effervescent tablets. So that makes a lot of sense.
Eating a light meal also increases absorption.
Posts: 146 | From Virginia | Registered: Mar 2010
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posted
Charles, thanks for posting this information. I don't feel so bad anymore, I was starting to think I would never get better if I couldn't even take starting out with 125mg.
I also had a small meal of some oatmeal and a little yogurt before each dose.
I am feeling much better today, the herx is definitely settling down, I think I am going to take 62.5mg my next dose and see how I do.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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quote:A comparison of the bioavailability of disulfiram (DSF) after administration of non‐effervescent Antabuse® tablets (CP Pharmaceuticals, UK) and Antabuse® effervescent tablets Antabus® (A/S Dumex, DK) has been made in two cross‐over studies.
The first study included 6 volunteers who were given 400 mg DSF after an overnight fast. The bioavailability of DSF after administration of non‐effervescent was found to be only 27 ff/o of that achieved with effervescent tablets.
The second study included 24 volunteers who were given 800 mg DSF after a light standardized meal. The relative bioavailability of DSF after administration of non‐effervescent compared with effervescent tablets was found to be only 34%.
In addition to the difference in bioavailability of DSF after administration of the two preparations, a considerable difference was seen between the two studies. A light meal seems both to increase the bioavailability of DSF and to reduce the interindividual variation. A two to threefold increase in the bioavailability of DSF was found.
Thus, the bioavailability of DSF appears to depend on both the formulation (preparation) and the mode of administration. A lack of bioequivalence between the two investigated DSF preparations was found.
posted
Hey gang...just wanted to say thanks for all the updates. Very helpful.
i will throw my two cents in for those of you getting crushed by the drug. Sitting on the sidelines listening to everyone's bizarre flare ups it couldn't be any more clear to me that these are herxes. Take solace because it appears this med is killing something we have been unable to reach for a long time. i know when your in the battle its so hard but it seems to be working.
keep in mind you will all have to keep me sane in October when i start.
week 4 on anti-inflammation diet and i'm having herxes from yeast die-off all involving the brain. But it is a text book herx...so what i'm doing is working. so i'm going to stick to it.
keep the faith
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
Charles, Alvogen the make of my Disulfuram. I have stopped taking Disulfuram as of my horrible reaction yesterday. I will wait until 120 hours+plus have elapsed and re-evaluate with my Lyme Expert.
quote:Originally posted by DaveNJ: Sitting on the sidelines listening to everyone's bizarre flare ups it couldn't be any more clear to me that these are herxes
I think so too.
Posts: 146 | From Virginia | Registered: Mar 2010
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quote:Originally posted by JRWagner: Charles, Alvogen the make of my Disulfuram.
Thank you!
Mine came from Duramed Pharmaceuticals.
I’ve asked my local pharmacy to make me compounded effervescent tablets.
Posts: 146 | From Virginia | Registered: Mar 2010
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Hey Charles12
Could you take your disulfiram with Alka Selzer antacid and pain relief?
Basically effervescent formulas are made with sodium bicarbonate and citric acid, which this Alka Selzer product has. Also would help with herx's. Thoughts?
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
I have been monitoring everyone's experiences and think I will try it. On IV now for the 10th time and need to find another way out of this nightmare.
Posts: 95 | From new york | Registered: Jan 2012
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If you start this drug, the one thing I would tell you is to not be afraid to go slow at first.
I would urge you to re-read the LLMD quote in my post on 8-28 at 3:13 pm.
Also, if you haven't already done so, click on the link in my post from 8-29 at 10:24 am and go to about the 31-32 minute mark and listen to Dr. H talk about how Disulfiram is the No. 1 drug for Herxheimer reactions, and how he has to start his patients on very small doses.
Again, good luck and be patient with this drug as it does it's thing.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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The herxes come in waves, and as I've discovered, it's important to have some food before taking my Antabuse. Otherwise the blood level drops too low and nothing of importance gets accomplished.
Right now, my left cheek feels a little numb, old symptom, and my neck feels like someone planted rebar through it.
I realize that sounds severe, but given that nothing I was taking, and nothing that I've taken in years has caused any major herxing, it's a good sign.
Some days the herxes are powerful. My sinuses can swell up, and my neck tightens. I also get acute eye pain.
Other days, I have this pleasant burning sensation in my skin, especially around my ears. It feels like sunshine.
There are days when I feel tired, and all I do is sleep when I get off work. Other days I get insomnia, and it's hard to fall asleep.
My eyesight is all around better, crisper. I can also run again, and it feels normal. I don't have the old exercise intolerance issues.
My personality has also come back, I can be funny the way I used to be. And there are days I really do feel like me again.
Posts: 146 | From Virginia | Registered: Mar 2010
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quote:Originally posted by mariel21: I have been monitoring everyone's experiences and think I will try it. On IV now for the 10th time and need to find another way out of this nightmare.
Be well, and bon chance.
-
I'm not a particularly cautious person, but I would echo what others have said. It may be good to start slow and see how you react.
Posts: 146 | From Virginia | Registered: Mar 2010
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quote:Originally posted by Bartenderbonnie: Hey Charles12
Basically effervescent formulas are made with sodium bicarbonate and citric acid, which this Alka Selzer product
I asked the pharmacist, he said that wouldn't work unfortunately.
Posts: 146 | From Virginia | Registered: Mar 2010
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JRWagner
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Member # 3229
posted
I can't even begin to tell you all how wrong you are. I just had a long conversation with Carol Fisch, who worked under Lyda Maitman, PhD, Lyme researcher and much more. Our genetics determine how we react to ABX as well as disulfuram. What I went through was NOT a herb but a r r action to the drug itself. It all has to do with methylation pathways and the immune system. Herxes have never been proven as more than a theory, with a bit of science thrown in. However, when I discussed the entire issue with Carol,I was like discussing graduate astrophysics with a high school intro physics student... and I have a biochem degree and two years of med school.
I will compile a list of suggestions and resources for everyone tomorrow.
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