My doctor said patients who have used this have been cured. Does anyone have any experience with this?
Posted by no_lyme_in_florida (Member # 5537) on :
There was a recent thread on this in the General Support forum.
It sounds like everything else. Not enough people yet to really make a decision. Thanks.
Posted by Charles12 (Member # 24729) on :
That sounds very compelling.
Posted by no_lyme_in_florida (Member # 5537) on :
quote:Originally posted by mariel21: It sounds like everything else. Not enough people yet to really make a decision. Thanks.
I would respectfully disagree with you. Did you read the article and the part about the Stanford study showing no Bb left after treating with Antabuse in a laboratory setting?
And the patients (a small number yes but significant for the outcome) who remain symptom free after treating with Antabuse and nothing else.
I have been sick since 2002 and have looked for a cure since then. In my opinion, I have seen nothing that has the promise of a miracle cure like this drug has.
There is little downside to this drug, it is very cheap and has few adverse side effects. I think that anyone who has Lyme and has failed to respond to other treatments should try to find any way possible to get their hands on this drug and try it.
Posted by Charles12 (Member # 24729) on :
Agreed
Posted by DaveNJ (Member # 17362) on :
I'm going to start this treatment in the middle of August. I have nothing to lose. I'll keep everyone posted.
Dave
Posted by mariel21 (Member # 35881) on :
True but two people had very severe side effects- losing consciousness is a big deal to me. I just wish more studies were done on this.
Posted by Keebler (Member # 12673) on :
- He speaks to several possible future approaches - and also clearly discusses the need for objective assessment, trials, study of such. Well written in that regard, especially concerning the multiple variables. Yet, still hopeful.
Novel drugs for Lyme - LymeMD Blog - Thursday, July 18, 2019
The dry spell is over. We have some promising new therapies. . . . -
Posted by Keebler (Member # 12673) on :
- Good luck DaveNJ! -
Posted by JRWagner (Member # 3229) on :
Hello all, long time! I started Disulfiram two weeks ago... 125 mg three times a week, then 125mg daily for a week, followed by alternating doses of 125-250mg. Next week... straight 250 mg daily. After that, hopefully 500mg daily. My only side effect is severe fatigue. I will update when necessary. Peace, love, and WELLNESS! James
Posted by mariel21 (Member # 35881) on :
Please update us on your progress. Thank you.
Posted by Charles12 (Member # 24729) on :
quote:Originally posted by JRWagner: Hello all, long time! I started Disulfiram two weeks ago... 125 mg three times a week, then 125mg daily for a week, followed by alternating doses of 125-250mg. Next week... straight 250 mg daily. After that, hopefully 500mg daily. My only side effect is severe fatigue. I will update when necessary. Peace, love, and WELLNESS! James
Thank you for checking in, and to echo what everyone else has said, keep us updated!
Posted by Charles12 (Member # 24729) on :
I took my first dose today, 500mg.
I herxed. That's unusual for me.
I felt sleepy, and had vaguely flu like symptoms.
[ 08-05-2019, 11:03 PM: Message edited by: Charles12 ]
Posted by Bartenderbonnie (Member # 49177) on :
Please keep us posted on your journey Charles12.
Posted by Charles12 (Member # 24729) on :
I will, I appreciate that many people drop off and leave you hanging.
If this works. I’ll post it here.
I do find my herx somewhat strange. It’s not necessarily a bad feeling, just peculiar, and it doesn’t feel like what I normally experience. There are no neurological symptoms for example. It feels like I have the flu, minus any sense of lethargy. Just that warm burning feeling. Except milder.
The herx symptoms developed within two hours of my first dose.
The medication itself is wicked cheap, and the doctor I saw gave me a six month script. I think we’ve all spent crazy money getting well. This one won’t break your bank.
Posted by Charles12 (Member # 24729) on :
Stolen from Reddit
quote:Disulfiram has worked me, My condition before starting on day 1 and my condition on day 35 is night and day. I don't really know how to describe it. It feels like a dream. I still don't believe I've improved this much in 35 days. I know some are going to be skeptical and think "too good be to true". I'm just being honest. I had to go through hell for about two weeks of a crazy herx to get here. I am still symptomatic and expect to have some bad days going forward due to herx or flare. But...seriously guys...this is working for me and I expect it to get me better. To better frame this......if I was absolutely forced to go get a full time job at this moment I'm confident I could do. I think it would be miserable at times, and would not be ideal for my long term health because I'm in a critical healing phase right now, but I think I could do it.
As I said above, it is my opinion that anyone with chronic lyme should do whatever they can to get their hands on this drug and try it.
In dealing with this illness since Nov. of 2002, I have not seen a more promising treatment than Disulfiram. And it isn't even close.
Posted by Charles12 (Member # 24729) on :
I'm on day two, and I'm just feeling better.
Not sure how to describe it.
He does note that the herxes grew severe around day ten. For me though, historically, I've never had bad ones. Just mild symptoms that let me know the drug was working.
quote: I have not seen a more promising treatment than Disulfiram. And it isn't even close.
I feel the same way.
Posted by no_lyme_in_florida (Member # 5537) on :
A few more thoughts on what Charles posted.
I strongly encourage EVERYONE to click on the link and read the entire message. I agree with the statement in the link that in his opinion "this is about to be a game changer".
Mariel, I am going to say again that it is my belief that this drug is very safe, and certainly so when compared to other drugs such as the fluoroquinolones.
Without going back and looking, I believe that the case of the person losing consciousness that you were concerned about was due to an interaction with another drug. That can be controlled.
If this drug is as effective as it seems to be at killing Bb, I believe everyone is going to have to experience some bad herx symptoms on the way to healing.
It would not surprise me if some of the reported adverse effects were simply herx symptoms, which is going to be unavoidable to some degree.
I am the opposite of Charles, herx symptoms have always been very severe for me. If I can get started on this treatment, I am going to start slow, maybe 100 mg every few days for a few weeks to see how I do.
If this drug were inherently dangerous, it would not be handed out to alcoholics as it has been. Just mho.
Posted by Charles12 (Member # 24729) on :
Day three - my neck is stiff, and hurts a little. My back too.
My brain feels clearer though. Nasal inflammation is down too, and it’s easier to breathe.
Posted by Bartenderbonnie (Member # 49177) on :
To all Lyme pioneers who have now started Disulfiram;
Are any of you currently taking other meds while on Disulfiram?
That is, opioid pain relievers, anti-histamines, benzo's or Xanax, supplements, aspirin, ect?
Are you going cold turkey for the duration of Disulfiram protocol?
Posted by Charles12 (Member # 24729) on :
Cold turkey
Posted by mariel21 (Member # 35881) on :
Yes compared to some of the other stuff I have taken, especially Ketek which was taken off the market I suppose it is worth trying. Charles- can you list your symptoms when you get a chance? Would like to see if I have any of them. Thanks.
Posted by Charles12 (Member # 24729) on :
I don’t think that would be useful.
The disease manifest in different ways, which may depend on our genetics. And there are presumably different strains. Symptoms also overlap from one illness to the next. There's also the issue of what does normal look like. We've all grown so used to being sick, that I don't think we do a good job of identifying our own symptoms. We've grown so used to them.
I have been diagnosed with Lyme, Babesia, and Bartonella.
[ 08-08-2019, 03:15 AM: Message edited by: Charles12 ]
Posted by mariel21 (Member # 35881) on :
True but if you had similar symptoms to mine and you saw improvement that would be useful to me but I understand if you don't want to share that.
Posted by Charles12 (Member # 24729) on :
It’s not about privacy, I just don’t think that would be a useful way of determine if you would benefit.
The laboratory data says you should benefit, it is the most effective compound they’ve ever tested for Lyme, and the anecdotal reports in the journal Antibiotics are astounding.
Those alone, remission! Warrant an attempt.
No one makes claims about remission. It just doesn’t happen.
[ 08-08-2019, 09:52 PM: Message edited by: Charles12 ]
Posted by Charles12 (Member # 24729) on :
Day 5
Continued neck and back stiffness. My skin has a pleasant burning sensation that comes and goes. My thinking remains clearer. My eyesight is much crisper this morning. Vision is noticeably better.
I did experience unusual fatigue last night. And I slept like a dead man.
Posted by Badtick (Member # 9794) on :
Thanks for sharing your experience Charles. I agree with everything you said. I will be starting Disulfiram w- my LLMD in September.
It is estimated that there are well over 1000 patients on this therapy currently and the number is growing exponentially.
My Dr. has already seen success with Disulfiram on a few patients with one being described as worst case prior to therapy.
Don't let the few case reports alarm you. The early adopters for any therapy tend to represent the most difficult complex cases.
Posted by no_lyme_in_florida (Member # 5537) on :
Charles, that sounds great.
Fatigue seems to be a common side effect for this drug.
I am cheering for you down here in S. Florida. Thanks for the updates.
Posted by no_lyme_in_florida (Member # 5537) on :
quote:Originally posted by Badtick: Thanks for sharing your experience Charles. I agree with everything you said. I will be starting Disulfiram w- my LLMD in September.
It is estimated that there are well over 1000 patients on this therapy currently and the number is growing exponentially.
My Dr. has already seen success with Disulfiram on a few patients with one being described as worst case prior to therapy.
Don't let the few case reports alarm you. The early adopters for any therapy tend to represent the most difficult complex cases.
Badtick, thanks for posting this. I think that the main thing moving forward will be some kind of agreement on standard dosage.
Right now it appears to be 500mg a day, but I have read of some people taking substantially less than that and doing well.
Also, for people who experience very severe herx symptoms or have problems with detoxing, there will probably need to be some kind of adjunct therapy as well in addition to the Antabuse.
Posted by Charles12 (Member # 24729) on :
quote:Originally posted by no_lyme_in_florida: Charles, that sounds great.
Fatigue seems to be a common side effect for this drug.
I am cheering for you down here in S. Florida. Thanks for the updates.
Thank you!
Just to be super accurate, is suspect it’s less a side effect, and more of a consequence of bacterial die off.
Alcoholics don’t experience fatigue with Antabuse.
-
I can feel my personality re-emerging, and my thinking is so much quicker.
I was actually funny today.
Posted by no_lyme_in_florida (Member # 5537) on :
quote:Originally posted by Charles12:
quote:Originally posted by no_lyme_in_florida: Charles, that sounds great.
Fatigue seems to be a common side effect for this drug.
I am cheering for you down here in S. Florida. Thanks for the updates.
I can feel my personality re-emerging, and my thinking is so much quicker.
I was actually funny today.
That is great, especially for only being on the drug less than a week.
I am hoping to begin treatment myself within a few weeks.
Posted by munchin (Member # 38744) on :
Hi everyone,I haven’t posted in a long time but I’ve been lurking. I’m still sick and disabled.
I’m starting disulfiram tonight. Stopping all abx...continuing ivig, probiotics ,magnesium and b12.
I am 1 of 4 patients my llmd wants to try it on. Low and slow is the plan. 1/4 pill for three days add 1/4 every three days until I reach 500 mg. Bloodwork every two weeks.
Posted by no_lyme_in_florida (Member # 5537) on :
quote:Originally posted by munchin: Hi everyone,I haven’t posted in a long time but I’ve been lurking. I’m still sick and disabled.
I’m starting disulfiram tonight. Stopping all abx...continuing ivig, probiotics ,magnesium and b12.
I am 1 of 4 patients my llmd wants to try it on. Low and slow is the plan. 1/4 pill for three days add 1/4 every three days until I reach 500 mg. Bloodwork every two weeks.
Best of luck, munchin.
Please let us know how it goes.
Posted by Digby (Member # 3888) on :
Hi All,
Started Disulfiram on Aug 19th at 250mg every other day. I ramped up to every day quickly and I can say that the herx is pretty severe.
I am convinced it is a herx because all my Lyme symptoms are exacerbated...no new symptoms. Also, when I take a day off the symptoms are relieved.
I did significant research on this and feel comfortable about the risk/reward ratio. I am however, finding that choosing a tolerable dose is very difficult for me.
I am a long term Lyme patient and like many of you have a complicated symptom and treatment history that I'm not willing to share at this time. I will say that I was as close to cured as ever using mild hyperbaric therapy (you can see my posts on the long LymeNet thread on that) but relapsed while trying to detox mercury with IV and oral therapies.
I am very happy to see a thread on this subject and hope that this is the "cure" we have all been waiting for.
[ 08-10-2019, 05:27 PM: Message edited by: Digby ]
Posted by Charles12 (Member # 24729) on :
Day 10
I feel a little feverish, but I don’t have a fever.
I get cold and warm flashes. But I don’t feel the need to layer up. I’m not actually cold.
My neck and back remain stiff.
My thinking remains clearer, I’m quicker on my feet.
Posted by TX Lyme Mom (Member # 3162) on :
quote:Originally posted by JRWagner: Hello all, long time! I started Disulfiram two weeks ago... 125 mg three times a week, then 125mg daily for a week, followed by alternating doses of 125-250mg. Next week... straight 250 mg daily. After that, hopefully 500mg daily. My only side effect is severe fatigue. I will update when necessary. Peace, love, and WELLNESS! James
JRW, what a delight to see an old-timer like you back here at LymeNet again and to know that you are going to be able to take advantage of this new promising antibiotic protocol with Antabuse.
You deserve this opportunity more than anyone else I can think of, knowing your very long Lyme history, and that you joined LymeNet way back in 2002, around the same time that my daughter and I did.
Luckily, our daughter celebrated the tenth anniversary of her recovery, without relapse, from Lyme at the end of this last year (Dec., 2018), although she hasn't written up her success story yet, and I'm reluctant to do so without her express approval. I know that you would remember her (screen-name initials LST) from those earlier days here at LymeNet.
We are both wishing you the very best of luck with Antabuse. Yes, please do keep us posted regarding your progress and ultimate outcome.
Posted by kidsgotlyme (Member # 23691) on :
Charles, thank you for being willing to try this and report your progress to us!! You are a superhero.
Posted by Charles12 (Member # 24729) on :
I appreciate the sentiment, all I’m doing though is trying to pass on my experience, in the hope that it may be useful to other people. The only sacrifice I’m making is a few minutes of time, here and there.
I do hope this is the one. And that I’ll be able to achieve remission. But if that doesn’t happen, I’ll record that here too.
I am hopeful though. And I believe, based on the laboratory research, the anecdotal reports, and my own experience, that this may be it.
[ 08-12-2019, 01:15 AM: Message edited by: Charles12 ]
Posted by Bartenderbonnie (Member # 49177) on :
Researcher Dr Brian Fallon Columbia University Disulfiram Clnical Trials for Chronic Lyme
I've read some patients have been having trouble locating pharmacies that can get it. Is anyone here having that problem? Or if you've heard that it is an issue? I saw it on a facebook group, Disulfiram for Lyme Support Group (Antabuse). There is a lot of feedback there.
I went to the FDA shortage webpage and saw that Mylan stopped manufacturing it in May. I sure hope that there are enough other manufacturers to meet the need. There may not be.
It's an old, cheap generic med that's been around for 70 years! No big profit there, unless they jack up the price (hope not).
Posted by Charles12 (Member # 24729) on :
I was told the 500mg pills were not available. The 250s were though.
Posted by Bartenderbonnie (Member # 49177) on :
Thank you Charles for updating everyone on this.
Posted by Digby (Member # 3888) on :
Quick Update:
This protocol is not for sissies! I'm only on day 9 but I think I ramped up to 250 mg too quickly so I am going back to 125 mg every other day or even every third day until the herx Sx become manageable. As it is I am unable to work or do much of anything during this herx.
Posted by Charles12 (Member # 24729) on :
Day 12 - felt proper feverish and just passed out for half the day. The other symptoms remain, but my head feels a lot clearer than it was even just a few days ago.
I was at lunch the other day and I was in the awkward position of eating with my boss, who was dead set on talking about politics.
We do not share the same politics.
I mention this because I was able to actually steer the conversation out of any danger zones, without simply shutting it down or otherwise offending him.
In terms of cognition, I feel like someone who’s gone from grunting caveman, to harnessing electricity, in the space of a week.
Posted by Rumigirl (Member # 15091) on :
Wow, Charles, just wow.
Thank you for the info on the 250's.
Posted by mariel21 (Member # 35881) on :
It's good that you are able to work while taking this drug. I would be wasted.
Posted by Charles12 (Member # 24729) on :
I had my first rough day.
I felt poorly last night, and I woke up with severe eye pain. I have always assumed that is Babesia.
It feels like an ice pick to the eye.
Posted by mariel21 (Member # 35881) on :
Sorry- have had that too.
Posted by map1131 (Member # 2022) on :
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
Posted by TX Lyme Mom (Member # 3162) on :
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."
Posted by Charles12 (Member # 24729) on :
I feel weak and lethargic today. My limbs are heavy.
Still that stiff neck.
I’ve had an off and on runny nose for the last 48 hours too.
My head feels clear though.
[ 08-17-2019, 05:21 PM: Message edited by: Charles12 ]
Posted by mariel21 (Member # 35881) on :
I hope you feel better soon.
Posted by Bartenderbonnie (Member # 49177) on :
Sending positive healing wishes to all Lyme pioneers 💚
Posted by Charles12 (Member # 24729) on :
My new normal.
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.
Posted by mariel21 (Member # 35881) on :
Charles- do you have neuropathy- burning nerve pain?If so is that better? Thanks.
Posted by Charles12 (Member # 24729) on :
I’ve had numbness in the past and some difficult annunciating due to neuropathy. But never a burning pain.
Based on my experience and everything I’ve read. I think we should all be on Disulfiram.
I think it works.
Posted by mariel21 (Member # 35881) on :
Thanks- keep updating us!
Posted by no_lyme_in_florida (Member # 5537) on :
Got my Antabuse today. Going to start tomorrow with 125mg.
Posted by mariel21 (Member # 35881) on :
Good luck!!!!!!! Let us know how it goes.
Posted by DaveNJ (Member # 17362) on :
Charles,
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
Posted by no_lyme_in_florida (Member # 5537) on :
quote:Originally posted by DaveNJ: Charles,
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.
Posted by mariel21 (Member # 35881) on :
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?
Posted by Digby (Member # 3888) on :
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.
Posted by Digby (Member # 3888) on :
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.
Posted by mariel21 (Member # 35881) on :
Thank you Digby.
Posted by Charles12 (Member # 24729) on :
Eating well is hard work, and certainly laudatory. I do think effective medicine is the best and ultimate cure for our ills though.
Posted by DaveNJ (Member # 17362) on :
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.
Peace
[ 08-22-2019, 09:28 PM: Message edited by: DaveNJ ]
Posted by Charles12 (Member # 24729) on :
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.
Posted by Digby (Member # 3888) on :
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.
Posted by mariel21 (Member # 35881) on :
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.
Posted by Digby (Member # 3888) on :
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.
Posted by mariel21 (Member # 35881) on :
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.
Posted by mariel21 (Member # 35881) on :
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.
Posted by mariel21 (Member # 35881) on :
Bad brain day-posted twice.
Posted by Digby (Member # 3888) on :
It's probably worth stating twice...wish the healthy people and doctors would see it!
Posted by Charles12 (Member # 24729) on :
quote:Originally posted by Digby: I understand that the bug is primary but a good diet can be a useful tool in the process.
I don’t disagree.
Posted by Charles12 (Member # 24729) on :
Day 23
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 ]
Posted by mariel21 (Member # 35881) on :
Oh God- feel better.
Posted by Bartenderbonnie (Member # 49177) on :
We are all hanging onto every reply posted. So want this to work for all. 💚
Posted by no_lyme_in_florida (Member # 5537) on :
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.
Posted by Charles12 (Member # 24729) on :
quote:Originally posted by mariel21: Oh God- feel better.
Thank you Mariel.
I’m feeling better today.
Posted by nefferdun (Member # 20157) on :
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!!
Posted by Charles12 (Member # 24729) on :
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.
Posted by no_lyme_in_florida (Member # 5537) on :
I decided to take my second 125mg dose this morning instead of waiting til Monday. Feel tired and neck has become stiffer than usual.
Posted by mariel21 (Member # 35881) on :
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.
Posted by Charles12 (Member # 24729) on :
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.
Posted by no_lyme_in_florida (Member # 5537) on :
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.
Posted by Charles12 (Member # 24729) on :
“Also some muscle soreness and stiffness which surprised me since I haven't done anything physical that might otherwise cause this.“
I’m also experiencing this.
Posted by Digby (Member # 3888) on :
“Also some muscle soreness and stiffness which surprised me since I haven't done anything physical that might otherwise cause this.“
"I’m also experiencing this."
Me too! Plus a host of other herx symptoms.
Posted by mariel21 (Member # 35881) on :
Maybe those symptoms are a side effect of the drug???
Posted by Digby (Member # 3888) on :
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.
Posted by Tincup (Member # 5829) on :
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.
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
Posted by no_lyme_in_florida (Member # 5537) on :
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."
Posted by mariel21 (Member # 35881) on :
Wow- this is very encouraging. JR- it's good you can still maintain a sense of humor while going through this.
Posted by Digby (Member # 3888) on :
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.
Posted by Charles12 (Member # 24729) on :
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?
Posted by JRWagner (Member # 3229) on :
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?
Posted by no_lyme_in_florida (Member # 5537) on :
quote:Originally posted by Charles12:
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.
Posted by mariel21 (Member # 35881) on :
JR- in Connecticut now. Yes you are right. Thanks for making me laugh again!!!!!!!!!
Posted by JRWagner (Member # 3229) on :
In CT? I was bitten in New Caanan. Upper class tick.
Posted by DaveNJ (Member # 17362) on :
No Lyme where did you find that awesome , encouraging LLMD quote?
Dave
Posted by no_lyme_in_florida (Member # 5537) on :
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.
Posted by no_lyme_in_florida (Member # 5537) on :
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.
Posted by mariel21 (Member # 35881) on :
Far from New Caanan but I got sick in New York. Hope we all get better soon!
Posted by Tincup (Member # 5829) on :
JR! Great to see you!! And I can see you still have a sense of humor too! That will help through the struggles.
Nice to see so many I haven't seen in a while.
My fault. Been working on Lyme "projects" nearly all of the time, and I do miss you all!
Posted by Tincup (Member # 5829) on :
Hey no Lyme in FL...
I very much appreciate you letting me know.
I made the correction and have no excuse for messing it up other than to say I am goofy!
But then, you knew that!
Thanks again!!
Posted by JRWagner (Member # 3229) on :
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
Posted by no_lyme_in_florida (Member # 5537) on :
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.
Posted by no_lyme_in_florida (Member # 5537) on :
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:
I hate the mechanics of this site... make one small mistake and one has to go back to square one.
That said, I took mmy 375mgs again based on my good sleep and dreams last night. Can't wait to see what the next episode wi bring! Previews at 6PM.
[ 08-29-2019, 05:06 PM: Message edited by: JRWagner ]
Posted by JRWagner (Member # 3229) on :
It is only 1:36 and feel weak and drained... NAP TIME! TA DA...
Posted by DaveNJ (Member # 17362) on :
JR - sure sounds like major herxing that you're going thru.
One month until i start.
Dave
Posted by no_lyme_in_florida (Member # 5537) on :
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.
Posted by DaveNJ (Member # 17362) on :
Makes sense....stay safe no Lyme.
Posted by DaveNJ (Member # 17362) on :
Makes sense....stay safe no Lyme.
Posted by JRWagner (Member # 3229) on :
My post from yesterday is gone. This does not make me happy.
Took a day break yesterday... will resume 250 mgs today... 375 might have been to high but really, how can I tell?
Ugh.
Posted by no_lyme_in_florida (Member # 5537) on :
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".
Posted by JRWagner (Member # 3229) on :
Yikes.. I know what a disulfuram herx can do. Perhaps you can try halving the 125 three times a week?
Posted by Charles12 (Member # 24729) on :
I went for a run yesterday.
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.
Posted by Digby (Member # 3888) on :
Thanks for the update Charles. Very encouraging!!
Posted by JRWagner (Member # 3229) on :
Cool... how long have you had Lyme?
Still taking disulfuram? Are you taking any abx? Keep on keeping on!
Pease, Love and Wellness, JRW
Posted by Charles12 (Member # 24729) on :
10 years.
Just 500mg of DSF once a day.
This is day 28.
quote: Keep on keeping on!
You too Posted by JRWagner (Member # 3229) on :
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
Posted by nefferdun (Member # 20157) on :
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.
Posted by JRWagner (Member # 3229) on :
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.
Peace, Love, and Wellness
JRW
Posted by Charles12 (Member # 24729) on :
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.
Posted by Charles12 (Member # 24729) on :
"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.
Posted by no_lyme_in_florida (Member # 5537) on :
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.
Posted by Charles12 (Member # 24729) on :
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.
Posted by no_lyme_in_florida (Member # 5537) on :
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.
Posted by Charles12 (Member # 24729) on :
Here's an excerpt
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.
quote:Originally posted by nefferdun: That is surprising because one of my symptoms is sore soles of feet in the morning when I first get out of bed.
That's the hallmark of Bartonella, no?
I believe DSF kills bartonella, based on the herxes I've experienced.
Posted by JRWagner (Member # 3229) on :
Is there a reason three of my posts have been deleted?
Posted by DaveNJ (Member # 17362) on :
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
Posted by JRWagner (Member # 3229) on :
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.
Peace, Love, and Wellness
JRW
Posted by Charles12 (Member # 24729) on :
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.
Posted by Charles12 (Member # 24729) on :
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.
Posted by Bartenderbonnie (Member # 49177) on :
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?
Posted by mariel21 (Member # 35881) on :
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.
Posted by no_lyme_in_florida (Member # 5537) on :
mariel, good luck and best wishes to you.
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.
Posted by mariel21 (Member # 35881) on :
Okay- I go slow with everything as I am sensitive. Good luck to you too!!!!!!!!
Posted by Charles12 (Member # 24729) on :
One Month
I'm not well yet, but I feel better.
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.
Posted by Charles12 (Member # 24729) on :
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.
Posted by Charles12 (Member # 24729) on :
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.
Posted by JRWagner (Member # 3229) on :
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.
Until then,
Peace, Love, And Wellness
JRW
Posted by DaveNJ (Member # 17362) on :
Jr,
Nobody would debate that we all react to drugs in different ways especially if you have methylation pathway issues. But to dismiss herxheimer reactions as a thing saying its not proven is way off base.
Yes we all have different problems clearing toxins from a die-off but that does not mean herxheimer reactions don't exist. Let's not dismiss the work done by Dr. Herxheimer.
I've lived it as have many others and this reaction is specifically noted in the research paper done covering the patients who took Antabuse.
The real issue is telling the difference between having a reaction to the drug and a herxheimer. I've experienced this as well and this is at the root of many bad experiences treating lyme.
Dave
Posted by JRWagner (Member # 3229) on :
Agreed. One should be sure by being tested by 23 and Me... I will verify exactly what test is required. After receiving the results they are sent to Genetic Genie for further evaluation and Carol Fisch, the microbiologist who runs the Sarasota Lyme Support group, will then do a final assessment.
Peace, Love and Wellness
JRW
Posted by mariel21 (Member # 35881) on :
Thank you Charles for your advice
Posted by nefferdun (Member # 20157) on :
JR, what specific mutation is causing you to have problems. I am homo for CBS and NOS. I cannot metabolize sulfur which builds up ammonia.
The ammonia can cause headaches, insomnia, and exhaustion, all symptoms of Lyme as well as typical HERX symptoms. So I understand it can be very confusing what is happening.
The doctor gave me Bactrim, which is sulfur - had to quit because it was just too much, and I still have not recovered.
I cannot tolerate coffee or caffeine, and am supposed to avoid food with sulfur like cabbage. I am a vegetarian - meat is high in sulfur. I could never drink alcohol, which is ironic as Antabuse makes drinking impossible.
I sure hope I can tolerate the DSL because it is my last hope. Mine should be here in about a week.
Posted by JRWagner (Member # 3229) on :
I have not had my results back yet. Bactrim? One dose and I have an anaphylactic reaction... but broccoli, cabbage... etc, no problems. I never eat beef or meat anyway. Vegans need yo be sure to get enough vitamin B12 and Choline.
Still recovering from whatever happened to me. We all need to go very slowly here.
Peace, Love, and Wellness, JRW
Posted by JRWagner (Member # 3229) on :
Ah... one can also use Ancestry DNA... save your password and give it to Genetic Genie... they will alslyze snippets from your genome and send you the results on a color copy. There is so much more to this that simply popping a pill or taking this or that. This explains why some of us have never responded to drugs or anything else for that matter. Most well intentioned MD'S don't have the education of one with a PhD in such research.
Peace, Love and Wellness, JRW
Posted by Charles12 (Member # 24729) on :
Day 34
My legs feel like lead. That is the biggest discomfort with my treatment. If I was in a race with a turtle today, the turtle would win. And the turtle would probably lap me too.
Otherwise, all is well. Some facial numbness. And I’ve got a little bit of brain fog today.
Posted by migs (Member # 16496) on :
JRW, I have worked with alcoholics since 1997 and I have never seen Antabuse cause the profound fatigue that many Lyme patients are experiencing...ever.
Your friend may speak confidently but is incorrect. If we were all so genetically different, why do drug companies bother making so many new drugs? U know why...because almost all medications work the same on a vast majority of patients. That is why doctors prescribe the same drugs for the same problems patient after patient. U would be a true outlier if that were the case. It is very likely that u are not special and u are having die-off issues like other patients do.
Posted by Bartenderbonnie (Member # 49177) on :
Proceed with caution BEFORE engaging with any genetic DNA company. I will start a new post about it.
Scroll down to read an article on this link about "Aldehydes" by Dr Frank Jurnak.
quote:Originally posted by migs: JRW, I have worked with alcoholics since 1997 and I have never seen Antabuse cause the profound fatigue that many Lyme patients are experiencing...ever.
I agree
Posted by no_lyme_in_florida (Member # 5537) on :
I am going to resume treatment today or tomorrow at a lower dose. I had started out at approximately 125 mg for 3 doses each three days apart, after which I had the most unbelievable herx I have ever had.
It's been 11 or 12 days since my last dose and the herx is finally settling down. My Antabuse is by Teva Pharmaceutical and are 200mg effervescent tablets. I have to dissolve them in water first like an alka seltzer tablet.
Charles has posted a link to a study that showed that effervescent tablets of disulfiram can have 2 to 3 times the bio-availability as non effervescent pills. I firmly believe that based on the severity of the herx I had. The 125mg's I took could have been as much as starting out with 250-375 mg's of a non-effervescent pill.
Dr. H, in the podcast I have linked earlier, says that almost all of his patients can only tolerate a half or even a quarter of a pill maybe twice a week for often times months to start with. In the podcast one pill for Dr. H is 250mg. A quarter pill would be about 62.5mg. Also, he is talking about non-effervescent pills as I do not believe anything else is available in this country.
With that in mind, I am going to resume with 25mg of my 200mg tablet, which with the study Charles linked should put me right about the same strength as others who are starting with 62.5mg's. In theory, anyway. Regardless, with the herx I had I was going to resume with a lesser dose anyway, study or no study.
I am going to continue with my experience so far in another post to break things up.
[ 09-10-2019, 03:33 AM: Message edited by: no_lyme_in_florida ]
Posted by no_lyme_in_florida (Member # 5537) on :
I live in an apartment complex with a pool about 500 to 600 feet from my front door. For the last 6 months or so I have barely been able to walk to that pool and sit at one of the tables under an umbrella.
On Saturday, as my herx was going away, I went to the pool and actually got in the water and floated around some. I tried to swim a little but my left shoulder was too painful. I didn't stay long but it felt great to get in the water. No way in hell would I have done that a month ago.
On Sunday, yesterday, I rested most of the day and when I got out of bed in the evening I felt good enough to go for a little walk. The circular road around my apartment complex is exactly 1 mile around. I started to walk toward the pool with the intention of going a little farther and then turning around.
As I walked I kept putting one foot in front of the other until I was halfway around so had no choice but to keep going. I stopped at a bench once for a minute or two, but made it all the way around for one mile of walking. Previously, walking the 500 or 600 feet to the pool and coming back would leave me shaking and very dizzy.
Today, after sleeping well and getting out of bed at noon, and eating a healthy breakfast of yogurt and plain oatmeal, I went to the pool again and got in the water. And guess what? I started swimming from one end to the other (about 35-40 feet). My shoulder was a little stiff but mostly pain free, and as I swam it felt better better and better.
Over a couple hours of getting in and out and resting in the shade under the umbrella, I swam about 20 short laps. My arms actually felt like they were working again, and my muscles did not feel like jelly.
There is NO DOUBT, none at all, that this drug is doing something that no other drug or treatment has done in the last 17 years of fighting this damn disease.
Not months and years of taking Doxycycline, tetracycline, minocycline, Zithromax, Ceftin, Flagyl, Biaxin, two rounds of Bicillin LA shots, 3 months of IV Claforan, and other antibiotics that I can't remember now, has had the effect that this drug seems to have had. I am by no means cured, but after that first horrific herx settled down this weekend, I was able to do some things that I have not been able to do in a very long time.
The only treatment that ever seemed to work previously was the 4 months of Malarone I took for Babesia.
I know that this drug is doing things that nothing else has been able to do. I can just tell by the herx first of all, and now by how I feel after the herx. I haven't had this much hope at any time in the 17 years I have been sick.
I plan on going low dose as I said above for however long I need to, I am in this for the long haul and don't care how long it takes. Right now I am thinking about going for a walk again around my apt. complex, but might wait til tomorrow after the swimming I did earlier.
Posted by Digby (Member # 3888) on :
no_lyme_in_FL, thanks for that wonderful report. I am taking 125 mg every third day. The pattern is analogous to taking chemo...for 2 days after taking the pill I am miserable with herx symptoms, the third day I feel pretty good but I have to take another pill. All that to say that I don't know if it's working yet but it is certainly doing something! I appreciate reading the positive reports.
Posted by no_lyme_in_florida (Member # 5537) on :
Digby, you're welcome. The herx I had and how I felt after the herx tell me that this drug is doing something pretty good. I am certainly not cured, but walking last night and swimming today has made me to almost be able to remember what it feels like to be well. I am so excited I literally cannot wait to see what I might feel like 6 months from now.
[ 09-10-2019, 01:06 AM: Message edited by: no_lyme_in_florida ]
Posted by Kristina B TX (Member # 51981) on :
I've been on disulfiram since February and doing good.. I've had a 6 week break and will stay on it until Nov 24 at my core dose of 375.
Posted by Digby (Member # 3888) on :
Kristina B TX...Did you ramp up on the dose? Was it difficult in the beginning? The herxes on this drug are some of the worst I've experienced. I am hoping it will help and have decided to stick it out but it is hard to stay positive about it. Hearing from people that have succeeded with it really helps...so thank you.
Posted by mariel21 (Member # 35881) on :
So glad I started this post. Finishing up IV now and then will start it.
Posted by DaveNJ (Member # 17362) on :
Marie,
I'm glad you started it as well.
Dave
Posted by mariel21 (Member # 35881) on :
Not yet Dave- maybe next week. Another new adventure.Hope you are getting well with this treatment.
Posted by JRWagner (Member # 3229) on :
OK, now on only 65 mgs. Currently on my third day. One does NOT have to experience massive herxs to improve. The drug can work at lower doses and still be effective. Massive herxs can and often do cause autoimmune issues. A friend of mine only on 125 mgs for three weeks had a massive herx, possibly combined with issues with the drug itself and has lingering numbness on his right side including his entire leg and other issues. He is not going back on Disulfuram. This drug in NOT benign, do not take more than necessary... best to go slowly and have patience.
Peace, Love, and Wellness.
JRW
Posted by WilliamHealing0101 (Member # 52000) on :
I have been in a constant state of psychosis for at least several days now. Voices screaming at the top of their lungs at me, extreme religious sensations and experiences, visions, geometrical and fractal imagery in my vision, and now I realize that maybe it's time to stop this treatment. I have 7 weeks left but honestly I believe these are side effects of the medicine as no herxheimer reaction would affect someone like this.
Posted by jcarlnew (Member # 45378) on :
My wife has third stage kidney disease that is controlled with meds. (Renal distal acidosis). We asked the kidney doctor and he punted back to Dr. H noting the extreme caution on the bottle and said never heard of to treat Lyme disease. Any thoughts?
Posted by DaveNJ (Member # 17362) on :
Jcarl,
i doubt anyone on here would know if this treatment is appropriate for someone with kidney disease. But the fact your doctor doesn't know about the treatment is understandable. if it were me i would provide him a print out of the research which can be found on the internet.
Dave
Posted by Bartenderbonnie (Member # 49177) on :
Here's what I found on the NIH (National Institute of Health) website. Health conditions contraindicated for Disulfiram therapy;
Cardiovascular disease Diabetes Thyroid disease Seizure disorder Central nervous system disorder Kidney disease Liver disease Women who are pregnant, breast-feeding, or plan to become pregnant.
I also have a question about whether Disulfiram is contradicted in IVIG patients?
I recently heard about a Disulfiram patient who had an adverse reaction while getting blood lab tests, from the alcohol swaps used before the blood draw.
This led me to research my IVIG product and manufacturing.
The manufacturing process of IVIG products from human plasma consists of a 5 step cold ethanol fractionation and purification method. Anywhere from 5%, 12 - 15% and up to 40% of ethanol is used. The ethanol is ultimately removed by ultra-filtration. Yet it is difficult to completely remove aggregates, solvents, sediments and impurities from the IVIG preparations.
Does anyone know if there is even an insignificant amount of ethanol in IVIG products?
Posted by Rumigirl (Member # 15091) on :
quote:Originally posted by Bartenderbonnie: I also have a question about whether Disulfiram is contradicted in IVIG patients?
I recently heard about a Disulfiram patient who had an adverse reaction while getting blood lab tests, from the alcohol swaps used before the blood draw.
This led me to research my IVIG product and manufacturing.
The manufacturing process of IVIG products from human plasma consists of a 5 step cold ethanol fractionation and purification method. Anywhere from 5%, 12 - 15% and up to 40% of ethanol is used. The ethanol is ultimately removed by ultra-filtration. Yet it is difficult to completely remove aggregates, solvents, sediments and impurities from the IVIG preparations.
Does anyone know if there is even an insignificant amount of ethanol in IVIG products?
Oh, no! I didn't know that the processing involves ethanol! I have been researching the use of disulfiram intensively, as I'd like to try it. BUT there are way too many issues for me, so I need to hold back for now.
The alcohol prep pads and chloroprep issue it a big one. (Chloroprep is used for cleaning the skin for central lines to prevent sepsis). One person who uses alcohol prep pads for daily injections said that it didn't bother him until he'd been doing disulfiram for a while, as the med builds up in your system. He then discovered that was why he was getting dizzy and having headaches (think it was headaches).
BB, did you call the manufacturer of your IVIG to ask? I presume so. (Not to ask about disulfiram, of course).
There is a VERY active facebook group for it, Disulfiram for Lyme Support Group. There are good files of info, including Dr. L's case report, an in-depth video interview with him, and a transcription of the video interview. Plus, lots of other articles and lists of foods/beverages/personal care products to watch out for in terms of possible reactions.
But I hadn't considered the IVIG itself---arghh!
There are possible side-effects that are concerning, ie, neuropathy. Dr. L talks about that, also. I also emailed him about that, as I was concerned, considering that I have pretty horrific neuropathy already.
Posted by Numeric (Member # 52005) on :
Hi folks! I just joined because two prior posts in this thread got me thinking: 1) Lyme patients herx worse than the average alcohol recovery patient on disulfiram, and 2) alcohol prep pads can be enough ethanol to produce a negative response.
Lyme patients often have concomitant candida infections. What if the small amounts of ethanol produced by candida could be enough to exacerbate the herx experience? What if first treating candida with nystatin and diflucan would lead to more comfortable disulfiram treatment for Lyme patients?
Has anyone seen this hypothesis tested on the FB group?
Posted by no_lyme_in_florida (Member # 5537) on :
quote:Originally posted by Numeric: Hi folks! I just joined because two prior posts in this thread got me thinking: 1) Lyme patients herx worse than the average alcohol recovery patient on disulfiram, and 2) alcohol prep pads can be enough ethanol to produce a negative response.
Lyme patients often have concomitant candida infections. What if the small amounts of ethanol produced by candida could be enough to exacerbate the herx experience? What if first treating candida with nystatin and diflucan would lead to more comfortable disulfiram treatment for Lyme patients?
Has anyone seen this hypothesis tested on the FB group?
Numeric, that is an excellent question and I remember coming across this exact concern in a Disulfiram Treatment for Lyme link that Tincup provided on page 2 of this thread. Here is the link:
There is a lot of information on this topic in that link. If you scroll down you will see one in particular..."Dihydromyricitin, Auto-Brewery Syndrome, Yeast Infections"
and in the second LLMD comment just below that...
"I always recommend an aggressive GI yeast cleanout before starting this to minimize GI alcohol production."
Lots of info on this topic in that link, too much to copy and paste.
Jeff
Posted by DaveNJ (Member # 17362) on :
Numeric,
Interesting thought especially for me getting ready to start Disulfram in 2 weeks and also fighting a fungal infection.
I'll be sure to ask my doctor about this but in the meantime i did find some info suggesting DSF has antifungal properties:
• Foods with high acetaldehyde levels taste sour to me now.
• My Bartonella has gotten worse, so I wouldn't recommend using DSF as monotherapy. I'm going to talk to my doctor about Methylene Blue next time.
Posted by no_lyme_in_florida (Member # 5537) on :
Charles, how do you differentiate between your Lyme and Bartonella symptoms? I know I had Babesia, but not sure if I have Bartonella.
Posted by Charles12 (Member # 24729) on :
Bartonella has always been my most serious struggle.
I remember sitting in the doctors office, four weeks after being bitten, and feeling this overwhelming sense of anxiety. I couldn't sit still, I couldn't read the US News and World Report in my hand, I just couldn't focus. The neurological symptoms were profound, and crippling.
I couldn't function.
When I feel anxious, when I feel like I did, sitting in that waiting room, I assume it's Bartonella. But that's not always an accurate assumption, because symptoms do overlap. Babesia can cause anxiety for example.
In this case, DSF is very effective at killing Lyme, and it also hits Malaria. So I rule out Babesia. I wasn't taking any Bartonella drugs, and my symptoms are consistent with Bartonella, so it's safe to assume it's the Bartonella again.
Symptoms do overlap, from one infection to another, but looking at my medicines, it seems unlikely that it's Lyme.
Posted by nomoremuscles (Member # 9560) on :
quote:Originally posted by Numeric: Hi folks! I just joined because two prior posts in this thread got me thinking: 1) Lyme patients herx worse than the average alcohol recovery patient on disulfiram, and 2) alcohol prep pads can be enough ethanol to produce a negative response.
Lyme patients often have concomitant candida infections. What if the small amounts of ethanol produced by candida could be enough to exacerbate the herx experience? What if first treating candida with nystatin and diflucan would lead to more comfortable disulfiram treatment for Lyme patients?
Has anyone seen this hypothesis tested on the FB group?
It might not be candida. And many of these herxes may not be herxes.
"The only absolute contradictions to HBOT is the presence of an untreated pneumothorax (collapsed lung), and recently, prior, or concurrent treatment with doxyrubicin, C isolation, sulfamylon, or Disulfiram (Antabuse).
Posted by Digby (Member # 3888) on :
Hm, I've been using both DSM and mHBOT. I'm not sure why the author said that DSM is contraindicated with HBO. There is no reference to a study and I've never seen this stated before. So, it looks like one person's opinion at this point. If anyone can hypothesize why it may be so, please share.
Posted by no_lyme_in_florida (Member # 5537) on :
This got me curious so I did a quick Google search:
Has anyone used disulfiram while recieving IVIG?
Posted by Digby (Member # 3888) on :
Wow, BartenderBonnie and no_lyme_in_florida...THANK YOU!!!
You may have saved my lungs from damage from the combination of HBOT and DSM.
It looks like a metabolite of DSM surpresses Super Oxide Dismutase, which with repeated sessions of HBO (at least at 2 atm) can damage the lungs.
I've been using mild HBO at only 4.2 psi (2 atm = ~30 psi) so that may be why I haven't had a bad reaction so far. Regardless, I am stopping the HBO until I complete the course of DSM.
I can't believe I didn't figure this out and I am forever grateful for the heads up!!!
Posted by Charles12 (Member # 24729) on :
Day 51
Someone wrote that DSF increases dopamine levels, and when Dopamine levels become too high, it can result in acute anxiety.
I think that's what I've experienced. It's difficult to describe, but it's nothing like the anxiety I've experienced with Bartonella.
As a consequence I went off of DSF for two days, which resolved the issue. I've since resumed DSF at 250mg.
I plan on speaking with my Doctor next week about Methlyene Blue. Bartonella has always been my most serious issue, and I believe my lingering symptoms are due to intracellular Bartonella persisters.
Posted by DaveNJ (Member # 17362) on :
Charles,
thanks for the update. are you still holding on to the gains you've made with brain clarity?
Dave
Posted by Charles12 (Member # 24729) on :
I'm holding onto those gains.
The inflammation in the tissue surrounding my right eustachian tube hasn't come back either, which I'm really excited about.
The diminished hearing and the clicking sound that came every time I swallowed, that was annoying.
Posted by mariel21 (Member # 35881) on :
Can you elaborate on Methylene Blue? Never heard of it.
Posted by Charles12 (Member # 24729) on :
quote:Originally posted by mariel21: Can you elaborate on Methylene Blue? Never heard of it.
Methylene Blue a dye, and a very antiquated medicine. It was first used in 1876.
Dr. Zhang at Johns Hopkins did a screen test for Bartonella last spring. He explored hundred of compounds and tested each one for their effectiveness against Bartonella.
Bartonella has both a stationary (persister) and growing phase like Lyme, and he was looking for drugs that would were effective against both forms. The persister phase explains why we stay sick.
Methylene Blue was one of the standouts. It was capable of killing Bartonella when it was growing, and when it shifted into stationary form. It has good bioavailability and it will also enter cells, where Bartonella hides.
This is exciting because the conventional treatments for Bartonella are not effective. Rifampin is very good at killing Bartonella as it grows, but it has no effect on the persister form of the bacteria.
MB was only one of several compounds that showed promise, but it's a very cheap and well understood drug with few side effects. It's also effective against Malaria, so perhaps it will work against Babesia too?
It's such an old and antiquated medicine, it is hard to get. Infuserv America is perhaps your best bet, but MB has a number of other interesting uses and it's starting to show up online. Apparently it improves energy levels, for example.
Posted by Brussels (Member # 13480) on :
I got methylene blue. I bought mine in Brazil.
I use it as an anti infectious substance, only for the skin, nails, exterior wounds.
I wonder if this would be toxic ingested?!
Posted by Charles12 (Member # 24729) on :
What does the label say?
They still need to do animal, and the human trials to establish the right dosages. Some doctors are trialling it with their patients though.
Posted by hiker53 (Member # 6046) on :
Methylene blue is toxic in high doses.
You need to keep it under 2 mg per kg of body weight.
Posted by Charles12 (Member # 24729) on :
quote:Originally posted by hiker53: Methylene blue is toxic in high doses.
You need to keep it under 2 mg per kg of body weight.
The oral and IV versions have different safety profiles.
You can dose much higher with the oral version.
Posted by Brussels (Member # 13480) on :
Oh, thank you Charles and HIker. I'm not thinking to ingest or do IV, but I was wondering about safety. I just did a fast google search, and I can find it easily here in Europe, for sale.
There are different concentrations, so I guess one has to know which one to use.
I only use it on the skin, together with red laser. It enhances the antimicrobial effects of the laser, sort of multiplying the effect by 2 or more. It also conducts the laser light, which is cool, if I understood well.
Posted by Charles12 (Member # 24729) on :
Anecdotal reports are very positive. 50mgs by mouth, twice a day.
Posted by mariel21 (Member # 35881) on :
Thank you Charles. Do you have to stop the other drug while taking Methylene Blue or are you taking both?
Posted by DaveNJ (Member # 17362) on :
Hey gang,
i saw my LLMD today hoping I was going to start on Antabuse this week. as i previously posted i spent the last 7 weeks doing a clean-up of my fungal issues. My doctor was super happy to hear that but recommended I go another 6 weeks of clean-up before starting due to interactions with acetelahyde(sp).
I trust her with my life so i'll just stick to what i'm doing. I cant lie i'm feeling a bit deflated about it. She is treating only 3 other people and simply said the reactions the patients are getting are incredibly strong.
I've come this far so what's another 6 weeks.
Ps...also was told to prepare to remove foods with cooper in them. That's going to be tough as almond butter and cashews are mainstays on my diet.
Dave
Posted by Charles12 (Member # 24729) on :
quote:Originally posted by mariel21: Thank you Charles. Do you have to stop the other drug while taking Methylene Blue or are you taking both?
I’ve read that it’s a messy drug, like Rifampin. But from what I can see it doesn’t interfere with any of the conventional Lyme medications.
Posted by mariel21 (Member # 35881) on :
Thanks Charles- so does that mean you will take the methylene blue with the Antabuse? You are brave.
Posted by Charles12 (Member # 24729) on :
quote:Originally posted by mariel21: Thanks Charles- so does that mean you will take the methylene blue with the Antabuse? You are brave.
I appreciate that, and thank you. I don't think I'm brave though. Some things are just necessary.
Posted by hiker53 (Member # 6046) on :
Dave, why do you have to remove food with copper while on Antabuse?
Posted by DaveNJ (Member # 17362) on :
Hiker,
From what i read taking DSF leads the body to hold onto copper. Apparently that's good if your using DSF for cancer but for Lyme patients it can cause an increase in neuropathy.
Dave
Posted by no_lyme_in_florida (Member # 5537) on :
quote:Originally posted by Charles12: Bartonella has always been my most serious struggle.
I remember sitting in the doctors office, four weeks after being bitten, and feeling this overwhelming sense of anxiety. I couldn't sit still, I couldn't read the US News and World Report in my hand, I just couldn't focus. The neurological symptoms were profound, and crippling.
I couldn't function.
When I feel anxious, when I feel like I did, sitting in that waiting room, I assume it's Bartonella. But that's not always an accurate assumption, because symptoms do overlap. Babesia can cause anxiety for example.
In this case, DSF is very effective at killing Lyme, and it also hits Malaria. So I rule out Babesia. I wasn't taking any Bartonella drugs, and my symptoms are consistent with Bartonella, so it's safe to assume it's the Bartonella again.
Symptoms do overlap, from one infection to another, but looking at my medicines, it seems unlikely that it's Lyme.
Charles, thanks for this post you made awhile back. I have never really known if Bartonella is part of my infection. When my LLMD prescribed Cipro for me many years ago I suffered a ruptured tendon in my left knee after just three pills, so I am probably not going to try a fluoroquinolone again like Levaquin as Dr. B recommends in his guidelines.
Most of my symptoms are neurological, but I have never had sore soles or any kind of red stretch marks. I guess I will wait to see how I ultimately do on Antabuse as to whether I think I need something different to treat that if it seems likely I am dealing with Bartonella as well.
Posted by no_lyme_in_florida (Member # 5537) on :
I haven't posted in awhile, but have continued to take approximately 50mg's of an effervescent pill every 3 or 4 days.
Physically, I believe the drug is still causing herxes and I have been able to walk up to three miles at night around my apartment complex. Previously, walking 500 feet left me wobbly. I have been swimming a little also but a nagging shoulder injury (not Lyme related) has limited that.
From the beginning, in addition to everything else, this medicine seems to effect my mood very strongly. I have had periods of extreme elation in which I felt on top of the world, but within a few hours it would switch to extreme anxiety and depression.
The last two weeks have been the worst time by far. Within 12-24 hours after taking a dose, I am experiencing a depression that I thought was not possible. I literally feel a complete depersonalization with everything, and am almost non-functional. I have never known a depressed feeling like what this drug is giving me.
If you look up Antabuse side effects, mental/mood changes are almost always listed. For those that remember the article by Dr. Kinderlehrer posted at the beginning of this thread, he talks about the successful treatment of a patient with Antabuse who had to have a psychiatric hospitalization during his treatment.
The patient did not think it was the drug, but based on what this drug has done to me it would not surprise me if it was. In doing some research on this, I have come across more than a few statements from persons taking this drug (for alcoholism, not Lyme), who stated that they were sent to a psychiatric hospital after starting this drug and that they had told their doctors the drug was responsible.
Almost all of them said that their doctors told them it could not be the drug and that their alcoholism was responsible, no matter how much they protested. Wow, Doctors not listening to patients, sound familiar? Anyway, based on my own experiences and things I have read, I believe this drug can cause some very extreme mental changes in some individuals.
Right now I have stopped taking the drug because I have to get out of this dark place I am in. When I start to feel better I will decide what to do moving forward. I am 17 years into a pretty much destroyed life because of this Lyme, but said that this treatment was going to be it one way or the other for me when I first started with Antabuse.
I will probably continue along that course and resume treatment in the future and just try to cope with whatever mood changes it gives me, as I absolutely know that it is doing something good against the Lyme.
Jeff
Posted by no_lyme_in_florida (Member # 5537) on :
One other thing, I am not on Facebook, but if anyone is on the Facebook forums dealing with Disulfiram for Lyme, could you let me know if anyone is experiencing some of the mood changes I have been experiencing?
Thanks in advance.
Posted by Charles12 (Member # 24729) on :
quote:Originally posted by no_lyme_in_florida: One other thing, I am not on Facebook, but if anyone is on the Facebook forums dealing with Disulfiram for Lyme, could you let me know if anyone is experiencing some of the mood changes I have been experiencing?
Thanks in advance.
I need to post an update.
But yes, I did.
I experienced mania if the dosage crept too high, and some low moments if I skipped a dose.
Posted by Charles12 (Member # 24729) on :
quote:Originally posted by no_lyme_in_florida:
quote:Originally posted by Charles12: Bartonella has always been my most serious struggle.
I remember sitting in the doctors office, four weeks after being bitten, and feeling this overwhelming sense of anxiety. I couldn't sit still, I couldn't read the US News and World Report in my hand, I just couldn't focus. The neurological symptoms were profound, and crippling.
I couldn't function.
When I feel anxious, when I feel like I did, sitting in that waiting room, I assume it's Bartonella. But that's not always an accurate assumption, because symptoms do overlap. Babesia can cause anxiety for example.
In this case, DSF is very effective at killing Lyme, and it also hits Malaria. So I rule out Babesia. I wasn't taking any Bartonella drugs, and my symptoms are consistent with Bartonella, so it's safe to assume it's the Bartonella again.
Symptoms do overlap, from one infection to another, but looking at my medicines, it seems unlikely that it's Lyme.
Charles, thanks for this post you made awhile back. I have never really known if Bartonella is part of my infection. When my LLMD prescribed Cipro for me many years ago I suffered a ruptured tendon in my left knee after just three pills, so I am probably not going to try a fluoroquinolone again like Levaquin as Dr. B recommends in his guidelines.
Most of my symptoms are neurological, but I have never had sore soles or any kind of red stretch marks. I guess I will wait to see how I ultimately do on Antabuse as to whether I think I need something different to treat that if it seems likely I am dealing with Bartonella as well.
Thank you
I do need to eat my words because I did develop some anxiety as my DSF treatment progressed. I thought it was Bartonella, but I believe it may actually be Babesia creeping back in. The Bartonella medications I took didn't help.
I am back on Krintafel right now though.
Posted by DaveNJ (Member # 17362) on :
quote:Originally posted by no_lyme_in_florida: One other thing, I am not on Facebook, but if anyone is on the Facebook forums dealing with Disulfiram for Lyme, could you let me know if anyone is experiencing some of the mood changes I have been experiencing?
Thanks in advance.
No-lyme,
i did join the facebook group and while many have joined only a few are posting the details of what they are going through, i haven't seen anyone post anything about a severe depression.i'll keep my eyes open.
Dave
Posted by no_lyme_in_florida (Member # 5537) on :
Thanks, Dave.
Posted by Charles12 (Member # 24729) on :
My anxiety was gone when I woke up this morning. That was 48 hours after taking the Krintafel. And after going through some modest herxing.
So I would conclude from my anecdotal experience.
• DSF kills Lyme. It cleared symptoms I’ve dealt with for years.
• DSF can cause mania and other mood disturbances.
• DSF is not effective against Babesia Ducani
Posted by futbolplayer (Member # 52018) on :
I took Disulfiram at a low dose for 4-5 weeks before I had to stop due to extreme mood disturbance. The drug definitely improved many symptoms beyond anything I have taken before. Like no_lyme_in_florida, I did experience extreme depression to the point that I began to feel hopeless, lost, and just extreme sadness. This combined with extreme fatigue resulted in me taking a break. My LLMD was also a bit surprised when I told him about the depressed mood.
I am going to give the Disulfiram another go once I can afford to lay around and not do much again. I have a very neurological presentation of Lyme Disease and perhaps this is what is causing some people to feel depressed. This drug is the real deal, take it from me as someone who tried every treatment for five years with minimal improvement. I am considering taking Disulfiram with an amphetamine and anti-depressant, if I can get my doctor to agree. I am not sure I can push through any other way to get to the recommended dose of 500mg.
I took 62.5mg ED for about 3 weeks, then tried to increase to 125mg at times before stoping the drug all together. I would notice Wild mood swings on it as well. I am happy with the results, want to treat more with it, am seeming to have lasting benefit, and will be discussing this all with my doctor.
What dosages are people on here? Let’s get this discussion really moving. Dilsulfiram is very promising based on my experience.
Posted by no_lyme_in_florida (Member # 5537) on :
futbol,
I have been taking 50mg's of an effervescent pill (has to be dissolved in water like alka seltzer) every 3 or 4 days for 5-6 weeks. There was a study linked back on page 2 showing that effervescent disulfiram can have 2 to 3 times the absorption of a regular pill.
The first patient had to have a psychiatric hospitalization during treatment. He says it wasn't the drug, but i have my doubts after what i have experienced.
The second patient lost consciousness and suffered a concussion, which was later attributed to a drug-drug interaction with a tricyclic antidepressant.
I had the same thought as you, try the disulfiram again with an antidepressant but I am a little concerned about a drug interaction like patient No. 2 had.
Here is a list of drug interactions from that same article:
Warfarin Phenytoin Barbiturates Opioids Tricyclic Antidepressants Hypo-glycemic agents Anti-histamines Benzodiazepines CNS stimulates Psychopharmacology Metronidazole Tinidazole Alcohol OTC products containing alcohol Avoid if allergic to rubber Not for use under 16 years of age
Posted by mariel21 (Member # 35881) on :
I have been following this thread as I want to start this drug but am concerned about side effects. I am presently on Malarone and IV Zithromax. Several weeks ago I was in a dark place that I have never been in before and I attributed that to the drugs I was taking but that has subsided now. I have a lot of stress in my personal life and still I am not in that dark place. I think the disease screws up our neurotransmitters. I do not take antidepressants. They never worked. I am still undecided to start the Antabuse. Thought others might like to know my experience.I am still on the combo mentioned above.
Posted by hiker53 (Member # 6046) on :
Is taking Saccharomyces boulardii contraindicated with Antabuse.
I take this “happy yeast” along with a probiotic to keep my gut flora balanced.
I am nowhere near taking Antabuse but am collecting information.
I am happy to see this thread.
Posted by Digby (Member # 3888) on :
hiker53...I take S. Boulardii with my low dose Disulfiram and don't think I am having any problems but you got me researching. So far I've only found this:
which has a list of metabolites when it is grown on rice bran. There are sugar alcohols but nothing that would break down into acetaldehyde.
I'll keep looking. Thanks for mentioning this.
Posted by hiker53 (Member # 6046) on :
Digby, how is Antabuse working for you?
Posted by Digby (Member # 3888) on :
The jury is still out. I've ramped up from 125mg every third day to every other day. Lot's of herx symptoms. I couldn't tolerate the full dose. I only lasted about 6 doses and got severely depressed and physically in pain and completely dysfunctional. One possible improvement is that I am sleeping better. That's huge for me.
Posted by futbolplayer (Member # 52018) on :
Yes, I too can confirm better sleep since starting this drug including more dreams. Does Disulfiram cause blurry vision for anyone? I also feel a warm burn while on the drug. I feel like I’m hot and need to sweat but can’t.
Posted by Charles12 (Member # 24729) on :
I don’t normally dream, but I did when I took dsf. And like you I slept better.
Posted by nefferdun (Member # 20157) on :
I started DSF on September 13th at 62.5 mg a day. I am 150 pounds. On the fifth day I doubled the dose to 125mg. On the 15th day, September 21, I began 250mg a day and continue to take that amount.
I initially had body aching and headache with some joint pain, and stabbing feelings in may stomach. All of that resolved except the headaches, which I have had for years.
I feel so exhausted it is like having been drugged - trying to wake up from anesthesia. My mind is zonked. I feel depressed - not teary eyes but just without a spark. Sometimes my husband can get a laugh out of me but for the most part I am a couch potato .
So it has been 25 days and I have nothing to report that this is making me better much less curing me. Someone on the FB page said he felt the same as me for 40 days and then suddenly everything changed for the better. I hope that happens to me.
Posted by Digby (Member # 3888) on :
nefferdun...when I had those symptoms from the DSF, I lowered the dose and they abated. Perhaps you are pushing the therapy a little too hard?
Posted by mariel21 (Member # 35881) on :
Is everyone taking DSF better now than before they started? Please let us know.
Posted by no_lyme_in_florida (Member # 5537) on :
I have been taking this drug for just about two months, with a couple of breaks due to herxing and a severe mood change I attributed to the drug. I am presently taking 50mg's of an effervescent pill every other day and will soon increase the dose to 100mg.
I continue to experience some unpleasant mood changes, mostly depression and anxiety but also some feelings of anger at times, but there is absolutely no doubt that I am much, much better than before I started. I am routinely walking between 3 and 4 miles several times a week, and have started using the small gym at my apartment complex. Both of those things would have been impossible for me before starting the drug.
I also have way less brain fog, and I am starting to remember more and more what it feels like to be well. In a conversation I had with a friend in Texas that I have known for over 30 years, and who was one of the first people I started telling 17 years ago that something was really, really wrong with me health-wise, she got silent for a few seconds and then told me that I was starting to sound like the old Jeff she knew from long ago. She said that she had not heard that from me since basically getting sick. I can feel my old personality coming back, as I now laugh at things that during most of my illness I would have just ignored or been unable to appreciate due to the misery I was in.
I am not cured by any means, and if I stopped taking the drug now I know that I would just end up back in the same place I was before starting, but I am only two months into treatment at a very low dose, so I am prepared for a 4 to 6 month, or longer, treatment period.
I might have stopped this drug 5 or 10 years ago during the first month when the herxing was brutal, but I am simply not going to live with this illness any longer and am going to fight through whatever I have to to hopefully come out of this with my life recovered. I will keep posting as honestly as I can about my experiences, and if I don't get well I will say so, but right now I am doing better and have more hope than at just about any time in the 17 years I have been sick.
Posted by Digby (Member # 3888) on :
no_lyme_in_florida...Great post! Thanks for the update. I am at close to 3 months on DSM. I've been doing 125mg EOD for most of this time. I continue to herx but so far I haven't seen any improvements. I have been sick for decades, so I am giving it more time. I just upped the dose to 250mg today to see if I can tolerate it.
Posted by mariel21 (Member # 35881) on :
Glad to hear that Jeff. Keep us posted.
Posted by FOX (Member # 10294) on :
quote:Originally posted by no_lyme_in_florida:
quote:Originally posted by DaveNJ: Charles,
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.
Posted by FOX (Member # 10294) on :
Beware of drinking green tea while taking Disulfiram. Acetaldehyde levels for a green tea bag are: (ng/g) 2,099.45 ± 187.10. From everything I've read online, avoiding foods high in Acetaldehyde such as bananas, pineapples, regular coffee, green tea, melons, yogurt, etc. is extremely important while taking Disulfiram (Antabuse). See: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4609974/ for some lists of foods high in Acetaldehyde.
Posted by DaveNJ (Member # 17362) on :
Dave [/qb][/QUOTE]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. [/qb][/QUOTE] [/QB][/QUOTE]
Fox, after seeing my LLMD on Oct 1st i was advised to put in another 6-8 weeks on the diet as the toxic output of fungus can cause a reaction with DSF.
i'm now in my 12th week and my inflammation is up and and down but i'm really pounding away at the fungal infection which has made my brain fog pretty severe.
i'm still planning on starting DSF but it looks like Dec 1st at this point.
Dave
Posted by FOX (Member # 10294) on :
Disulfiram is a known, broad spectrum anti-fungal agent (see www.researchgate.net/publication/6171222_Antifungal_Potential_of_Disulfiram and www.ncbi.nlm.nih.gov/pmc/articles/PMC3910836/#B41 In other words, the "toxic output of fungus can cause a reaction with DSF" as you described, may just be a Jarish-Herxheimer reaction, as the fungal infection(s) are killed off. I'm not sure why your LLMD would want you to delay starting Disulfiram because of a fungal infection. If you must delay starting Disulfiram, can your LLMD put you on Diflucan for a month? Diflucan is great, but it can be hard on the liver, and most LLMDs won't prescribe it for more than a month or so. What about starting on a really low dose of Disulfiram, e.g. 62.5 mg once every 2 or 3 days, while using any number of Detox agents (e.g. L-Cysteine, Alka Seltzer Gold, etc.)? It has been my personal experience that adhering to a strict anti-yeast diet while taking multiple ABX has not always been sufficient, and anti-fungals were necessary to keep the fungal loads down.
[ 10-30-2019, 04:20 AM: Message edited by: FOX ]
Posted by DaveNJ (Member # 17362) on :
Fox,
Thanks for the advise but even if I wanted to start DSF I couldn't as it's backordered across the USA. Though I'm in agreement with the approach as I think getting ahead on the fungal infection should lessen the misery I know is coming. I'm on week 12 of ACD week 7 of antifungals (herbal) week 3 probiotics and week 1 of fluconazole.so I'm crushing it from all angles and of course I'm sick as hell....though sick for me is all CNS stuff...brain fog is horrible.No memory, mood swings etc.
And once I get done with this onto DSF to probably go thru this all over again.
Dave
Posted by FOX (Member # 10294) on :
I started on DSF a few weeks ago. The retail (chain) pharmacy I use said their supplier couldn't get it, but they checked with one of their other pharmacies locally, which had it, and I got it the same day. Shop around. If you can't get it, try a compounding pharmacy. Starting out on a really low dose of DSF, and slowly working your way up, may help to avoid major Jarish-Herxheimers, according to anecdotal accounts I've read online about this. I've had no problems with this approach, so far, anyway.
Posted by munchin (Member # 38744) on :
Just checking in from August. I got up to 125 mg suffering all the way.
I was actually relieved to take a break to treat a respiratory infection. I have cvid so needed abx, two rounds.
I’ve started again at 62.5 mg twice a week. I’m two weeks in and man o man its a rough ride with this drug.
No improvements, living on the couch inspecting the ceiling
Posted by Bartenderbonnie (Member # 49177) on :
Lyme disease. Drug Abuse Germ Cell Tumor. Glioblastoma Breast Cancer. Alcohol Abuse HIV. Opiate Abuse Melanoma Metastatic Pancreatic Prostate Cancer. Non-small cell Lung Cancer PTSD. Healthy Living
Thank you to all the volunteers.
Posted by hiker53 (Member # 6046) on :
I applied for the study but to qualify you have to have had some success with antibiotics. I had zero success.
Decided the multiple trips to NY were too much from IL
They also start you out with 500 mg of Antabuse. From reading here that sounds like a killer.
Posted by Bartenderbonnie (Member # 49177) on :
Not to worry hiker about high doses during clinical trial.
According to disulfiram for Lyme Facebook, they reached out to Dr Fallon, who's conducting the clinical trial at Columbia. Many patients were concerned about this. He addressed this with lowering his doses.
I'm awaiting feedback on Babesia improvements and then it's a GO for me!
Posted by bcb1200 (Member # 25745) on :
Just wondering how folks are doing on this new therapy.
This webpage (link above) offers a roadmap to success with Disulfiram -- "The Right to Be Cured" -- compiled by a team of successful early adopters of Disulfiram therapy.
Posted by Digby (Member # 3888) on :
Thanks TX Lyme Mom
Posted by cht girl (Member # 26170) on :
Thank you for sharing Lyme Mom. I am getting ready to start Disulfiram, and I will use the link as my bible for the next few months. I am feeling hopeful that this will finally be a cure.
Posted by cht girl (Member # 26170) on :
Question for people taking Disulfiram. I am trying to find alcohol free products for grooming, makeup hairspray, etc..... and finding it difficult to find products that don't seen to have some type of what sounds like could be a alcohol derivative in them. Anyone on the protocol still using hair color, makeup, items that have what seems to be a small amount of alcohol in it without problems? I just need to know how vigilant to be.
This has tons of info including soaps, shampoos etc.
Also diet, detox and more.
Posted by WakeUp (Member # 9977) on :
quote:Originally posted by no_lyme_in_florida: I live in an apartment complex with a pool about 500 to 600 feet from my front door. For the last 6 months or so I have barely been able to walk to that pool and sit at one of the tables under an umbrella.
On Saturday, as my herx was going away, I went to the pool and actually got in the water and floated around some. I tried to swim a little but my left shoulder was too painful. I didn't stay long but it felt great to get in the water. No way in hell would I have done that a month ago.
On Sunday, yesterday, I rested most of the day and when I got out of bed in the evening I felt good enough to go for a little walk. The circular road around my apartment complex is exactly 1 mile around. I started to walk toward the pool with the intention of going a little farther and then turning around.
As I walked I kept putting one foot in front of the other until I was halfway around so had no choice but to keep going. I stopped at a bench once for a minute or two, but made it all the way around for one mile of walking. Previously, walking the 500 or 600 feet to the pool and coming back would leave me shaking and very dizzy.
Today, after sleeping well and getting out of bed at noon, and eating a healthy breakfast of yogurt and plain oatmeal, I went to the pool again and got in the water. And guess what? I started swimming from one end to the other (about 35-40 feet). My shoulder was a little stiff but mostly pain free, and as I swam it felt better better and better.
Over a couple hours of getting in and out and resting in the shade under the umbrella, I swam about 20 short laps. My arms actually felt like they were working again, and my muscles did not feel like jelly.
There is NO DOUBT, none at all, that this drug is doing something that no other drug or treatment has done in the last 17 years of fighting this damn disease.
Not months and years of taking Doxycycline, tetracycline, minocycline, Zithromax, Ceftin, Flagyl, Biaxin, two rounds of Bicillin LA shots, 3 months of IV Claforan, and other antibiotics that I can't remember now, has had the effect that this drug seems to have had. I am by no means cured, but after that first horrific herx settled down this weekend, I was able to do some things that I have not been able to do in a very long time.
The only treatment that ever seemed to work previously was the 4 months of Malarone I took for Babesia.
I know that this drug is doing things that nothing else has been able to do. I can just tell by the herx first of all, and now by how I feel after the herx. I haven't had this much hope at any time in the 17 years I have been sick.
I plan on going low dose as I said above for however long I need to, I am in this for the long haul and don't care how long it takes. Right now I am thinking about going for a walk again around my apt. complex, but might wait til tomorrow after the swimming I did earlier.
I am almost in tears reading that you can actually swim again!! Praise to God!!
And I thought my chronic Lyme (1992) was bad-- since I am in bed about 80% of the day with bad fatigue, but at least I do have enough energy to swim slowly in a small pool for one hour a day, and then to make dinner-- but that is about it. When I read your story I felt so grateful for the ability to even swim at all.
I am so happy that you are getting better!! I really am crying now. We have all suffered so much, but many of us have just kept it inside and tried to adapt. Swimming is one of the main things that has kept me alive. If I could not swim I don't know what I would do. Recently the right knee was very painful for breast stroke for a while, but I just shifted to a flutter kick breast stoke, and now its better.
Cleaning house is a huge chore for me. Even short shopping trips tire me out. Yes-- I did the same as you-- doxy, then 2 years on amoxicillin with probenecid, then other things ranging from Flagyl to Tinidazole. Flagyl cured my brain fog temporarily, and the doxy and amox temporarily cleared up symptoms, but they always came back. Some herbs like samento did help, but then I developed severe side effects. And now I have that nasty skin fiber condition.
But maybe there is hope now in my senior years! Thanks so much for sharing your story.
I think I will be giving the Antabuse a try after the holidays.
Posted by FOX (Member # 10294) on :
Years ago, during an office visit in NY with Dr. B, a prominent LLMD, he asked me about my exercise regimen. When I told him that I swam at least 45 minutes, 3 or more times per week, he admonished me: "Don't go into a pool until you are over this." I asked him why, and he explained that by immersing oneself in a pool, you lower your body temperature," (which is what you don't want to do, when fighting an infection, apparently). He recommended P/T, then enrolling in a Trim & Sculpt (non-aerobic) class at a local gym. He cautioned against any aerobic activity until I was close to remission. I followed his advice, which worked out very well.
Posted by Broxin (Member # 52040) on :
@fox, thats weird. Didnt dr bruscano specifically said that we NEED to exercise to get well? You think he meant non-aerobis exercise?
And what about tue mHBOT method then? It works with up to 100% of oxygen
Posted by FOX (Member # 10294) on :
If you look at Dr. B's "Advanced Topics in Lyme Disease, 2008 edition" please read page 31. Here is an excerpt: "Regular exercise-related movements can help mobilize lymph and enhance circulation. In addition, there is now evidence that a carefully structured exercise program may benefit T-cell function: this function will depress for 12 to 24+ hours after exercise, but then rebound. This T-cell depression is more pronounced after aerobics which is why aerobics are not allowed."
Posted by hiker53 (Member # 6046) on :
I highly respect Dr. B, but sometimes you have to do what feels good. And if swimming feels good, do it in moderation.
I know Dr. B suggests not to exercise every day, but I have to for my shoulder surgery rehab and balance therapy. Well, I take one or two days off per week to rest the body as anyone should with exercise.
Last few years when I was walking every day for 30 minutes is when I felt the best since getting Lyme.
Sometimes feeling good mentally leads to feeling better physically.
[ 12-18-2019, 09:43 PM: Message edited by: hiker53 ]
Posted by Broxin (Member # 52040) on :
Under "sideeffects" There is one thing that keeps me sceptical if i could use it
Its "Avoid if allergic to rubber"
Im alergic to latex.
Anyone that is alergic to latex had any alergic reactions to dsf ? Or all of you, would you think i should be very cautious if latex is a problem for me?
Posted by hiker53 (Member # 6046) on :
Up for someone to answer Broxin’s question.
Also updates from any users?
Posted by Cass A (Member # 11134) on :
I'm currently researching disulfiram therapy as potentially being useful to me.
There's a very informative interview with Dr. Dan K in Colorado, who's been using disulfiram in his practice since March of 2019.
He goes over many facets, including distinguishing Herxes from newro-toxic effects from the drug, as these latter can cause permanent disability!
It's well worth a study, not just a listen!
Posted by marie (Member # 3980) on :
I was looking at the trial criteria. I didn't have a response to the abx the LLMD had me on. She didn't change them at all during treatment. That's the only long term treatment I received.
I hope I can obtain this new drug if needed. Is this a sulfa drug as I am allergic to them. I have been sick since 1996 with documented bulls-eye & positive ELISA & initial treatment. Treatment didn't knock it out as symptoms began within 6mos & progressed. But no luck for any new treatment since then with negative lyme test.
Posted by marie (Member # 3980) on :
Is anyone going to apply to be in the clinical trial?
I did not have a response to the abx the LLMD had me on. She didn't change them. That's the only long-term treatment I had. Negative lyme test currently. I had tick bite bulls-eye documented & positive ELISA in 1996 with doxy treatment. Seems abx didn't resolve infection.
Allergic to sulfur drugs also. Just read online you can still take it as long as you don't have an allergy to rubber. Is that the same as latex. I was tested & have a propensity for allergy. After bloodwork-my arm appears red & swollen like a possible allergy.
Posted by marie (Member # 3980) on :
Can you take this drug if you are allergic to sulfur drugs & possibly latex?
Posted by marie (Member # 3980) on :
Is this a sulfur drug? Can you take it with a possible allergy to latex? Has anyone volunteered for this trial? Can you contact Dr. Fallon?
Posted by marie (Member # 3980) on :
Can you take it if you are allergic to sulfur drugs and possibly allergic to latex?
Posted by FOX (Member # 10294) on :
According to the "Disulfiram for Lyme" article posted online: "Although it contains sulfur, disulfiram is not a sulfonamide, i.e. it is not a sulfa drug, so sulfonamide allergy problems do not apply to this drug." See: http://www.disulfiram.net/
I would ask your doctor or pharmacist to confirm this. A doctor specializing in allergies and immunology might be helpful, although in my experience few of them have any experience with Lyme.
Posted by Cass A (Member # 11134) on :
Any answer yet on the latex issue? I have tested allergic to that, but not to rubber.
Posted by DaveNJ (Member # 17362) on :
Folks,
just providing a small update. I'm still ramping up DSF which started at the beginning of February. I'm now at 62.5 a day. No miracles and no real reaction.
I did a candida clean up before starting and continue to do so. I've seen some cognitive improvement due to that protocol so hopefully I can get some momentum.
I'll post again in a month.
Dave
Posted by Verna (Member # 52107) on :
Thanks to everyone who's posted about taking disulfiram. I'm trying it. In case it helps someone else, here's my experience so far.
I've been dealing with Lyme for 9 yrs, including 3 acute episodes and the chronic type. The last 4 yrs have been debilitating. Sometimes abx (I tried all kinds) worked for me, but not always.
I started on disulfiram 2 wks ago, 125 mg twice per week.
I'm allergic to sulfa drugs and I've had no trouble with disulfiram. I'm eating bananas, coffee, pineapple and anything else I want with no bad reaction. (Years ago, because it helped with my symptoms, I stopped eating sugar, flour, dairy and alcohol.) Using alcohol-based hand sanitizer or wipes hasn't been a problem either.
So far, disulfiram seems to have kicked up my worst Lyme symptoms, like crushing fatigue. There are times when I can't even sit up or lift my arms. The shooting pains in my arms, legs, hands and feet are worse than before and keep me awake at night. The ringing in my ears is bad. Dizziness is bad, like I'm spinning on a raft in the ocean. Brain fog and headaches are the same.
I'm not feeling any psychological effects such as increased anxiety like some other people reported. If anything, I feel calmer. And my heart isn't doing that stop-start-stutter thing it does when Lyme flares.
Still hopeful that things will get better. Wishing you all well.
Posted by Garz (Member # 52095) on :
@ Verna - thanks for posting i am sure many many people here are keen to hear of your trials and those of others trying Disulfiram here - so good luck with your trial and please do keep the updates coming
:up
Posted by DaveNJ (Member # 17362) on :
I'm on day 59 and I just moved up to 62.5 2x a day. It wasn't until about 2 weeks that I began having a reaction. My anxiety/brain fog has really been ramped up. My legs ache more than usual and my sleep has been disturbed as well. I've never had an a issue rolling over and going back to sleep. Now I wake up after 6 hours and that's all the sleep I'm getting.
The brain fog which has always been my #1 issue is pretty severe again and then taking into account the news each day its very easy to feel overwhelm.
That said, this is what I anticipated.
Posted by BobG (Member # 39642) on :
Hang in there DaveNJ. It is like a wall you need to break through, but once you are on the other side, you'll be glad you did. Do all the things that help with the herx and be treat yourself well. Keep us updated.
Posted by tickbite666 (Member # 43399) on :
I'll chime in. Started first 62.5mg dose on January 27, and worked up to 375mg on Feb 26. Tried to push up to 500 mg in March but backed down to 375mg on March 6.
So been at 375mg per day for a month now, with increased fatigue and insomnia is terrible, and a return of stiff cracking neck, stabbing joint and bone pains, and sore heavy arm and leg muscles... all very familiar sx like the old days.
One word of caution.. I went to re-fill my Rx at CVS last week and they were on back-order with no fulfillment date. I could only get 30 pills from another CVS branch and had to pickup myself. So now I have a refill script for 90-day mail order I'm trying to get from Walgreens, Walmart or Target so I don't get through 30 days and run out again.
Jury still out... but in it for a few more months to see.
Posted by DaveNJ (Member # 17362) on :
quote:Originally posted by BobG: Hang in there DaveNJ. It is like a wall you need to break through, but once you are on the other side, you'll be glad you did. Do all the things that help with the herx and be treat yourself well. Keep us updated.
Thanks Bob...appreciate it. I feel very optimistic about things.
Posted by Cass A (Member # 11134) on :
Hi, friends,
I'm on quite a number of "alternative" media lines and just got a notice that Antabuse is likely to become in short supply, and this problem will likely last for months due to supply system issues.
Here's the list of meds: Drugs most likely to be in short supply: 1. Chloroquine phosphate 2. Hydroxychloroquine 3. Melphalan tablets 4. Anagrelide capsules 5. Disulfiram tablets 6. Irbesartan tablets (very wide use) 7. Losartan tablets (very wide use) and also being tested against coronovirus 8. Venlafaxine extended release capsules (wide use) 9. Levetiracetam immediate release tablets and extended release tablets 10.Diclofenac Potassium tablets 11. Famotidine tablets 12. Fluvastatin capsules 13. Tacrolimus capsules 14. Methyldopa tablets 15. Hydrozyzine capsules 16. Telmisartan tablets 17. Losartan with Hydrochlorothiazide tablets 18. Mycophenolate capsules and tablets 19. reports now on Ventolin (albuterol) inhalers
If you want the full backstory on the supply chain, you can watch this video:
An excerpt from "Therapeutic options for the 2019 novel coronavirus (2019-nCoV), " published in "Nature Reviews Drug Discovery" on 2/19/20 ("Nature" is one of the most prestigious scientific journals published in the U.K., similar in prestige to it's US equivalent, the journal "Science"):
"Approved protease inhibitors including disulfiram, lopinavir and ritonavir have been reported to be active against SARS and MERS. Disulfiram, an approved drug to treat alcohol dependence, has been reported to inhibit the papain-like protease of MERS and SARS in cell cultures ... but clinical evidence is lacking."
Here is a link to another article about this, published in ChemRxIV on 3/5/20:
"Molecular docking against the two thiol proteases Mpro and PLpro of 2019-nCoV provide evidence to support a TOS II mechanism for two experimentally identified anti-2019-nCoV disulfide oxidants: disulfiram and PX-12. Remarkably, disulfiram is an anti-alcoholism drug approved by FDA 70 years ago, thus it can be immediately used in phase III clinical trial for anti-2019-nCoV treatment." This article also mentions in passing the findings that Disulfiram is gaining stature as a powerful, perhaps universal agent against cancer, among other things.
My LLMD (my Lyme-literate shrink) told me last week that he suspects Disulfiram probably provides immunity from the COVID-19 novel coronavirus, although I think he is making an inference based on evidence published on laboratory (not clinical) evidence demonstrating Disulfiram's ability to protect against MERS and SARS, two other dangerous, contagious coronaviruses.
Let's hope they can get a clinical trial for Disulfiram for Covid-19 fast-tracked, although given the supply shortage of Disulfiram already in the US, perhaps partly caused by the news that Disulfiram may be the magic bullet for chronic Lyme and Babesia, this news may not be good for Lyme sufferers already on, or trying to go on Disulfiram. My LLMD also said that Disulfiram may not be appropriate for the general public, given that it's a psych drug (with rather severe interactions with not only alcohol, but many other foods and household items, e.g. yogurt, most fruits, coffee, vinegar, Purell, etc.). My LLMD said that he heard that the supply shortage of Disulfiram was supposed to come to an end soon, but his earlier predictions about this, haven't panned out.
Let's hope our president doesn't get hold of this info about Disulfiram as a potential magic bullet for Covid-19, like he did with Plaquenil, and promote it during a press conference. That would throw us Lyme and Babesia sufferers from the frying pan into the fire.
Posted by FOX (Member # 10294) on :
I am having trouble finding Disulfiram. Does anyone know a reliable, trustworthy pharmaceutical supplier? The compounding pharmacies charge an arm and a leg. I was getting it with a $4.00 co-pay, with my health insurance. The FDA just keeps pushing back the availability dates. Looks like only Alvogen and TEVA are still manufacturing it for the US market. I had been transferring my prescription from one pharmacy to another since the shortage began, but I seem to have run out of options.
Posted by JRWagner (Member # 3229) on :
Walmart can get it... Publix in Florida... inexpensive with GoodRx.
Posted by tickbite666 (Member # 43399) on :
I had CVS fill my first Rx in January, then found a refill at another CVS in my area. CVS, Walmart, and Walgreens are all out of stock with no back -order date from their supplier in site.
I had to bite the bullet and get a refill from Hopkington Drug last week. 250mg capsules for $108 plus shipping, but tough to cut up for lower dosage.
Other Compounding Pharmacies are in same cost range. I got a 3 month script ready for anyone who can take a mail order under my drug plan.
Let us know what you find.
Posted by FOX (Member # 10294) on :
The latest FDA update says the supply shortage will be over after May 8th, according to my LLMD, but they have pushed that back every month for the last 6 (?) months, I think. The drug companies aren't interested in manufacturing a drug off patent, they don't make any money on it.
Posted by buratinos (Member # 52207) on :
Antabuse is not the only solution to your problem. I say this based on my experience with alcoholism. Other measures are needed to get rid of it. Alcoholism is hard to treat and especially when a person is not committed to treatment and long-term therapy. This drug is one step in the treatment, and it is pretty good, but if you choose to be treated at fherehab.com, there will undoubtedly be a different approach to the choice of the drug. Don't think that the same drug will work for everyone.
![[group hug]](graemlins/grouphug.gif)
![[Big Grin]](biggrin.gif)
![[Smile]](smile.gif)