posted
Sorry- have had that too.
Posts: 95 | From new york | Registered: Jan 2012
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Dig a little deeper folks and read the warnings about Lyme folks needing to go very slow with this product.
You are not going to win this race by herxing and overwhelming your body.
What are you doing for outstanding liver support during this?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
quote:Originally posted by map1131: Dig a little deeper folks and read the warnings about Lyme folks needing to go very slow with this product.
You are not going to win this race by herxing and overwhelming your body.
What are you doing for outstanding liver support during this?
Pam
What Pam said bears repeating, so take heed.
I say this as the mother of a recovered Lyme patient from "ten plus" years ago -- although she didn't have the advantage of antabuse back then, of course. Nevertheless, the basic principle is still the same, no matter which therapy protocol you are following.
The body needs adequate time to process and to detox the toxins which are released during Herxheimer reactions, and if you try to fast-forward through this slow and tedious process, then you are simply adding injury to insult.
"Impatient patients are their own worst enemy." That used to be our old motto. This same motto will keep you out of trouble, too, if if you practice patience and proceed slowly and cautiously.
"Haste makes waste" is another good motto to keep in mind, too.
Repeat those mottos like a mantra, if necessary, in order to avoid the mistake of trying to speed up the process and then experiencing those inevitable setbacks.
One more mantra: "Slow is fast, and fast is slow."
Posts: 4563 | From TX | Registered: Sep 2002
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My head is clear and I feel vaguely feverish most days. The gains in cognition are amazing. In retrospect, I was in pretty bad shape. The flu like symptoms. Those are really manageable.
Every seven days or so, I have a flare of what might be Babesia symptoms. Not air hunger, but pain.
I do think this is working.
I’m going to set some phone reminders, so I can take stock at 30 days, and 60 days. But for now, I just think I’m getting better.
Posts: 146 | From Virginia | Registered: Mar 2010
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posted
Charles- do you have neuropathy- burning nerve pain?If so is that better? Thanks.
Posts: 95 | From new york | Registered: Jan 2012
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Thanks for the update...so encouraging. i also indicated on an earlier post that i was going to start this protocal. I decided that i would put in 2 solid months of strict diet and see if i could get my body better prepared as truth be told after 13 years i've just been ignoring this illness and eating and doing what i want. A form of coping i suppose but not one that i recommend.
I am two weeks in : no sugar , no carbs , no dairy and no caffeine. Trying to get my inflammation under control. (which is working)
I plan on starting Antabuse on Oct 1st.
I look forward to being a guinea pig. If it helps me it will help anyone ..cuz i'm a mess.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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Thanks for the update...so encouraging. i also indicated on an earlier post that i was going to start this protocal. I decided that i would put in 2 solid months of strict diet and see if i could get my body better prepared as truth be told after 13 years i've just been ignoring this illness and eating and doing what i want. A form of coping i suppose but not one that i recommend.
I am two weeks in : no sugar , no carbs , no dairy and no caffeine. Trying to get my inflammation under control. (which is working)
I plan on starting Antabuse on Oct 1st.
I look forward to being a guinea pig. If it helps me it will help anyone ..cuz i'm a mess.
Dave
Dave, I am in pretty much the same situation. I am 17 years in and my life is pretty much destroyed, and the depression that has caused has resulted in me not giving a damn anymore about a lot of things, including diet.
I knew it was going to take me a little bit of time to get this drug, so about a month and a half ago I tried to go on a strict diet as well to prepare myself for the rigors of treatment. I have lost 15 lbs and inflammation seems to be down.
One thing I have done is to drink 4-6 cups a day of decaf green tea. I swear I have herxed on this, and my lyme symptoms have subsided noticeably since doing this.
Anyway, I am still pretty much a mess, lol, and feel like this is either going to cure me or kill me. We'll see I guess.
Good luck to you on beginning this drug on Oct. 1.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
Have not tried diet changes- why would that help? If you cut out all of those things from the diet, what then do you eat?
Posts: 95 | From new york | Registered: Jan 2012
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posted
mariel21, dietary changes have profound actions on the body but the primary one in this case is the anti-inflammatory effects. Also, by reducing carbs and getting all the amino acids you need, you upregulate detox pathways. Hope that helps.
Posts: 566 | From NW Arkansas | Registered: May 2003
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posted
I posted on Aug. 12th, so this is a quick update. So far I have had to reduce my Disulfiram to 250 mg every third day. The herxing is severe if I increase it more than that. No windows of healing at this time but I am hoping for that when I can finally increase my dose.
The only thing that reduces the symptoms is coffee enemas, so I've been doing that every other day. I was hoping for some quick relief but it looks like I need to be in it for the long haul.
Does anyone else find an increased appetite? I am hungry all the time which is unusual for me.
Posts: 566 | From NW Arkansas | Registered: May 2003
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posted
Eating well is hard work, and certainly laudatory. I do think effective medicine is the best and ultimate cure for our ills though.
Posts: 146 | From Virginia | Registered: Mar 2010
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posted
To follow up digby's comments the purpose for reducing all those inflammatory foods it's reduce the burden on my body and my digestive system. I can honestly say seven years removed from my last antibiotic I am still dealing with fungal issues. While I was working a high-stress corporate job for years I tended to stress eat cuz of course I wasn't feeling well in fact I was just hanging on.those are very hard habit to break especially when they go back to when I was a kid.
but with the promise of this new drug I see no point in taking it if I'm not in the best shape I can be for someone with chronic lyme.
Sidebar to that is 12 days with no sugar and my inflammation has easily been reduced to the tune of 50%. The bad thing for me is every time I do this my body inflammation improves and my brain inflammation gets worse obviously because a fungal die off. So I'm trying to remove that burden or at least reduce it before taking antabuse.
posted
We’re sick because we’re sick. Diet does influence how we feel, but it’s a minor component of that. Outside of something like a serious food allergy.
Posts: 146 | From Virginia | Registered: Mar 2010
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posted
Charles, I respectfully disagree. Diet can't cure tick borne diseases but by reducing inflammation and up regulating immune function is does play a part.
It also has profound effects on other chronic conditions which helps in general. For example if a person has metabolic syndrome diet can fix that and reduce the damage from AGEs. Or if you gut microbiome is unhealthy diet can help.
I understand that the bug is primary but a good diet can be a useful tool in the process.
Posts: 566 | From NW Arkansas | Registered: May 2003
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posted
I tried dairy free- gluten free and I got worse so in my case I don't know if diet changes would help but easy enough to try. I have never given up sugar but it's worth seeing if it helps.
Posts: 95 | From new york | Registered: Jan 2012
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posted
mariel21, Yes everyone is different. I am a low carb/keto coach but I would never suggest that it's the best diet for everyone. The best we can do is experiment for ourselves.
Posts: 566 | From NW Arkansas | Registered: May 2003
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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: 566 | 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: 566 | 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: 566 | From NW Arkansas | Registered: May 2003
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