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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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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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: 564 | 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: 564 | From NW Arkansas | Registered: May 2003
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posted
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.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
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.
Posts: 564 | From NW Arkansas | Registered: May 2003
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Thanks for the update...so encouraging. i also indicated on an earlier post that i was going to start this protocal. I decided that i would put in 2 solid months of strict diet and see if i could get my body better prepared as truth be told after 13 years i've just been ignoring this illness and eating and doing what i want. A form of coping i suppose but not one that i recommend.
I am two weeks in : no sugar , no carbs , no dairy and no caffeine. Trying to get my inflammation under control. (which is working)
I plan on starting Antabuse on Oct 1st.
I look forward to being a guinea pig. If it helps me it will help anyone ..cuz i'm a mess.
Dave
Dave, I am in pretty much the same situation. I am 17 years in and my life is pretty much destroyed, and the depression that has caused has resulted in me not giving a damn anymore about a lot of things, including diet.
I knew it was going to take me a little bit of time to get this drug, so about a month and a half ago I tried to go on a strict diet as well to prepare myself for the rigors of treatment. I have lost 15 lbs and inflammation seems to be down.
One thing I have done is to drink 4-6 cups a day of decaf green tea. I swear I have herxed on this, and my lyme symptoms have subsided noticeably since doing this.
Anyway, I am still pretty much a mess, lol, and feel like this is either going to cure me or kill me. We'll see I guess.
Good luck to you on beginning this drug on Oct. 1.
posted
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.
Posts: 22 | From PA | Registered: Oct 2006
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posted
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
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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posted
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 ]
Posts: 22 | From PA | Registered: Oct 2006
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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
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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posted
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.
Posts: 22 | From PA | Registered: Oct 2006
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posted
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.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10175 | From Illinois | Registered: Aug 2004
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
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!
Posts: 3217 | From Florida | Registered: Nov 2016
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
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.
Posts: 4563 | From TX | Registered: Sep 2002
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posted
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.
Posts: 143 | From Louisville KY | Registered: May 2010
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posted
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.
Thanks L
Posts: 143 | From Louisville KY | Registered: May 2010
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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.
Posts: 696 | From New York | Registered: Aug 2006
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posted
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.
Posts: 22 | From PA | Registered: Oct 2006
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posted
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."
Posts: 22 | From PA | Registered: Oct 2006
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posted
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.
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