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» LymeNet Flash » Questions and Discussion » Medical Questions » Antabuse (Page 3)

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Author Topic: Antabuse
DaveNJ
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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

--------------------
On my journey to wellness - One day at a time.

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JRWagner
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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

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mariel21
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Thank you Charles for your advice
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nefferdun
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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.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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JRWagner
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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

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JRWagner
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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

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Charles12
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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.

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migs
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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.

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Bartenderbonnie
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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.

https://sites.google.com/view/treating-lyme-related-diseases/disulfiram-treatment

Some people have trouble converting Vit B's.
One can supplement with taurine, sustained released NAC, and sublingual methylocobalamin.

Some people have MTHFR detoxification defects.
https://medlineplus.gov/lab-tests/mthfr-mutation-test/

More ways to help your body;
https://www.prohealth.com/library/lyme-disease-mthfr-3-supplements-know-91735

You can order a lab biomarker for methylation here;
https://labtestsonline.org/tests/mthfr-mutation#

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Charles12
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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
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no_lyme_in_florida
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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 ]

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no_lyme_in_florida
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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.

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Digby
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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.
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no_lyme_in_florida
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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 ]

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Kristina B TX
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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.

--------------------
KMBauer

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Digby
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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.
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mariel21
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So glad I started this post. Finishing up IV now and then will start it.
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DaveNJ
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Marie,

I'm glad you started it as well.

Dave

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mariel21
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Not yet Dave- maybe next week. Another new adventure.Hope you are getting well with this treatment.
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JRWagner
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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

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WilliamHealing0101
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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.
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jcarlnew
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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?
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DaveNJ
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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

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On my journey to wellness - One day at a time.

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Bartenderbonnie
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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.

https://www.ncbi.nlm.nih.gov/books/NBK64036/

Possible Side-effects;
https://www.ncbi.nlm.nih.gov/books/NBK64036/table/A92964/?report=objectonly

https://www.ncbi.nlm.nih.gov/books/NBK64036/table/A92986/?report=objectonly

Adverse reactions;
https://www.ncbi.nlm.nih.gov/books/NBK64036/table/A92991/?report=objectonly

Signs of Liver Impairment;
https://www.ncbi.nlm.nih.gov/books/NBK64036/table/A92987/?report=objectonly

Drug Interactions;
https://www.ncbi.nlm.nih.gov/books/NBK64036/table/A92993/?report=objectonly

Laboratory Testing;
https://www.ncbi.nlm.nih.gov/books/NBK64036/table/A92995/?report=objectonly

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Bartenderbonnie
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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?

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Rumigirl
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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.

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Numeric
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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?

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no_lyme_in_florida
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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:

https://sites.google.com/view/treating-lyme-related-diseases/disulfiram-treatment.

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

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DaveNJ
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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:

http://www.jsmm.org/common/jjmm48-3_109.pdf

Dave

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On my journey to wellness - One day at a time.

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Charles12
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Day 44

• 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.

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no_lyme_in_florida
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Charles, how do you differentiate between your Lyme and Bartonella symptoms? I know I had Babesia, but not sure if I have Bartonella.
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Charles12
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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.

Posts: 100 | From Virginia | Registered: Mar 2010  |  IP: Logged | Report this post to a Moderator
nomoremuscles
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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.

https://newatlas.com/medical/microbiome-alcohol-producing-gut-bacteria-fatty-liver-disease/

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Bartenderbonnie
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HBOT, hyperbaric oxygen therapy, is contradicted with Disulfiram. (scroll down to last paragraph.)

https://www.prohealth.com/library/the-most-overlooked-effective-prescription-drug-6385

"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).

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Digby
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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.
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no_lyme_in_florida
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This got me curious so I did a quick Google search:

https://www.ncbi.nlm.nih.gov/pubmed/6244385

http://www.sierraplasticsurgery.net/contact-us/antabuse-disulfiram-hyperbaric-oxygen-treatment/

https://www.medscape.com/answers/1464149-105458/what-are-contraindications-for-the-use-of-hyperbaric-oxygen-therapy-hbot

https://www.bartonhealth.org/tahoe/health-library/complications-of-hyperbaric-oxygen-treatment-4694.aspx?iid=134_148

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Bartenderbonnie
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Still seeking answer to my question posted above.

Has anyone used disulfiram while recieving IVIG?

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Digby
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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!!!

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