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. Posts: 989 | From NJ | Registered: Sep 2008
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JRWagner
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posted
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.
posted
Thank you Charles for your advice
Posts: 95 | From new york | Registered: Jan 2012
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nefferdun
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posted
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 Posts: 4676 | From western Montana | Registered: Apr 2009
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JRWagner
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posted
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
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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JRWagner
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posted
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
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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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.
Posts: 146 | From Virginia | Registered: Mar 2010
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posted
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.
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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Bartenderbonnie
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posted
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
Posts: 146 | From Virginia | Registered: Mar 2010
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posted
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.
posted
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.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
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.
Posts: 539 | From NW Arkansas | Registered: May 2003
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posted
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.
posted
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.
Posts: 539 | From NW Arkansas | Registered: May 2003
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posted
Not yet Dave- maybe next week. Another new adventure.Hope you are getting well with this treatment.
Posts: 95 | From new york | Registered: Jan 2012
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JRWagner
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posted
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.
posted
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.
Posts: 8 | From Houston, TX | Registered: Sep 2019
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posted
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?
Posts: 98 | From Kalamamazoo,Michigan | Registered: Feb 2015
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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
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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Bartenderbonnie
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posted
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.
Bartenderbonnie
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posted
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?
Posts: 2977 | From Florida | Registered: Nov 2016
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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.
Posts: 3771 | From around | Registered: Mar 2008
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posted
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?
Posts: 1 | From Eastern North America | Registered: Sep 2019
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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:
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
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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• 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.
Posts: 146 | From Virginia | Registered: Mar 2010
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posted
Charles, how do you differentiate between your Lyme and Bartonella symptoms? I know I had Babesia, but not sure if I have Bartonella.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
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: 146 | From Virginia | Registered: Mar 2010
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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.
"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).
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
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.
Posts: 539 | From NW Arkansas | Registered: May 2003
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posted
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!!!
Posts: 539 | From NW Arkansas | Registered: May 2003
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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.
Posts: 146 | From Virginia | Registered: Mar 2010
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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.
Posts: 146 | From Virginia | Registered: Mar 2010
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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.
Posts: 146 | From Virginia | Registered: Mar 2010
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Brussels
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Member # 13480
posted
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?!
Posts: 6199 | From Brussels | Registered: Oct 2007
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They still need to do animal, and the human trials to establish the right dosages. Some doctors are trialling it with their patients though.
Posts: 146 | From Virginia | Registered: Mar 2010
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hiker53
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posted
Methylene blue is toxic in high doses.
You need to keep it under 2 mg per kg of body weight.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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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.
Posts: 146 | From Virginia | Registered: Mar 2010
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Brussels
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posted
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.
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
Thank you Charles. Do you have to stop the other drug while taking Methylene Blue or are you taking both?
Posts: 95 | From new york | Registered: Jan 2012
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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
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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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.
Posts: 146 | From Virginia | Registered: Mar 2010
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posted
Thanks Charles- so does that mean you will take the methylene blue with the Antabuse? You are brave.
Posts: 95 | From new york | Registered: Jan 2012
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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.
Posts: 146 | From Virginia | Registered: Mar 2010
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hiker53
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posted
Dave, why do you have to remove food with copper while on Antabuse?
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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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
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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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.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
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
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
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.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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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.
Posts: 146 | From Virginia | Registered: Mar 2010
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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.
Posts: 146 | From Virginia | Registered: Mar 2010
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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
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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posted
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.
Posts: 3 | From USA | Registered: Oct 2019
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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
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
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.
Posts: 95 | From new york | Registered: Jan 2012
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
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.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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posted
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:
posted
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.
Posts: 539 | From NW Arkansas | Registered: May 2003
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posted
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.
Posts: 3 | From USA | Registered: Oct 2019
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posted
I don’t normally dream, but I did when I took dsf. And like you I slept better.
Posts: 146 | From Virginia | Registered: Mar 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
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.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
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?
Posts: 539 | From NW Arkansas | Registered: May 2003
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