hiker53
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I hope the weather where you are is this gorgeous as it is here. Sunny and 65 and very conducive to exercise.
Tell us what kind of movement you are doing this week whether it’s walking, swimming, cleaning, scraping the frost off your car etc.
I walked about 14 minutes today.
I did a load of laundry.
I rearranged some of my living room furniture.
Today’s the day off for my shoulder exercises, but I’m sitting in my chair icing my shoulder and back and watching the rest of the World Track and Field Championships.
posted
Same good weather here in so jersey. I ramed a little and did a little laundry. Trying to keep moving.
Posts: 509 | From southern new jersey | Registered: May 2003
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I did next to nothing after church yesterday. I slept for two hours and then went to the store for a few things.
Saturday we had choir and that night I went with hubby to the Octoberfest where he was playing.
Went home to watch the Astros beat Tampa Bay. It took all the way to midnight, so I was exhausted on Sunday. (also had storms that woke me up at 5:30 that morning)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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I have had a very rough two weeks and apologize for not posting.
This drug (Antabuse) is causing some very, very bad mood changes that have left me for most of that period in probably the darkest place of my life. I am not exaggerating. If you look up Antabuse side effects, mood or mental changes are listed and that is certainly what I am experiencing.
This drug seemed like a last hope for me after 17 years, and now I am having to seriously consider stopping it altogether. I have no doubt that it is doing something to the Lyme, but I do not believe I can continue treatment if these side effects do not let up. I am literally non-functional now with the level of depression I am experiencing.
I have walked and swam some during this period, maybe not as much as I was doing, but have forced myself to do it at times.
I have stopped the medication for now and hope that I start to feel better.
I hope everyone is well.
Jeff
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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hiker53
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I did my shoulder exercises, back stretches and walked a little bit.
Went to podiatrist. Wasn’t that impressed with him.
Shoe shopped. Ordered 3 pairs and Hope at least 2 of the 3 fit. I need some dressy shoes. One pair was more casual but if I can get my size I think it would be super comfortable.
Am waiting at chiropractor again.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8887 | From Illinois | Registered: Aug 2004
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posted
Florida .. Oh, so sad for you!! How long have you been taking it?? I hope your misery lets up soon.
Hiker .. That's sad about the podiatrist. Did you order from Zappos?
I went to my PT evaluation on my shoulder. She worked on it and it's a little loosened up. I need to ice it later.
marie .. just keep moving, is right!
I hope AK and LP had a good day.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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aklnwlf
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Home PT for the old SI joint and neck, then did my arm routine. Mom and I headed to the wellness center for exercise. We had a dance party at Zumba today with 3 instructors! It was quite a bit harder today but I enjoyed it. Mom did her 27 minutes on the NuStep and about 3 laps around the center.
Spent the majority of the evening studying and just finished for the night.
Marie welcome to the exercise thread! Glad that you're here!
TuTu did you enjoy the Oktoberfest and more importantly, did you do the chicken dance?! I don't think I'm going to make Oktoberfest at Ft. Benning this year but am going with my Mom and her BFF to someone's home to celebrate towards the end of the month. I'm looking forward to it!
NLIF I was reading some of the posts about Antabuse in Medical and noticed folks were having the same issues that you're having. I'm sorry that it made you ill. During my lyme treatment I couldn't take any of the cyst busters. They about killed me! Hang in there and hoping you feel better soon.
Hiker I was reading the texts today about foot issues and I have the same problems. I kinda clip mine down and file the heck out of those puppies! It's a real pain! Glad you found some shoes. Your back must still be giving you fits. You might have to come down here and see my therapist. He specializes in SI joint injuries. I came down from AK to be treated by him in 2000.
Anyways....it's 10:32 and more than time for me to veg and stare at the tube until I fall asleep....
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6145 | From Columbus, GA | Registered: Jul 2004
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hiker53
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NLIF—I am so sorry Antabuse put you in a dark place and pray you will come out of it soon. I appreciate you sharing your experiences with this treatment. Praying for you.
I did my shoulder rehab exercises and back stretches.
Walked 15 minutes.
Took my couch cushions to an upholstery shop to order new foam for them. Much cheaper than a new couch. Will take several days for the foam to come in, so brought my cushions back home.
Riley came and weeded and trimmed the bushes one more time. Next week he may try to pull out a few yucca plants in the front that are overtaking the drive. I worry he may pull the bumper off his jeep.
My once a month cleaning lady came today. She does such a wonderful job for a reasonable price and is so kind.
I am off to cook a little bit and then work on Bible study.
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8887 | From Illinois | Registered: Aug 2004
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aklnwlf
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Hi everyone! Forgot to do my home PT before heading to the Y. Walked 3 laps while waiting for one of the rowing machines to be free and when it was did my 10 minutes. From there moved to the elliptical for 20 minutes. Didn't make my usual 15 minutes in the sauna, only lasted about 11 minutes. Was feeling a bit dizzy.
Then home to make chicken salad for the week and slogged through one more chapter (a biggie) on variable annuities. I'm calling it quits and it's only 5:04!
Don't have a clue about dinner! Mom and her BFF are going to a meeting and I think they'll eat out. Can I come to your house Hiker?
Also Hiker way to go on your exercises! How's the back doing? So funny that Riley's going to tie the plants to his bumper! I did the same thing with some azaleas at my old place. If I remember right I either had a tow ball on the truck or tied it somewhere underneath. Hope his vehicle survives!
Well, think I call Josh and see what he's doing for dinner.
Later gang!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6145 | From Columbus, GA | Registered: Jul 2004
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I made the following post on the Medical Antabuse thread and am going to copy and paste it:
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.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
Lymetoo, I have been taking it for a little over a month, and since 4-6 months seems to be the minimum treatment length, I am worried about how I might get through it.
AK, it does seem that others are having some of the same problems, and not only Lyme patients but those who are taking it for alcoholism.
I feel a little bit better today, I might try to walk a few miles tonight. I can't stand to do nothing, it drives me crazy. Almost as bad as this drug. .
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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hiker53
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NLIF—do you have a friend who can stay with you in those rough times or who can check in with you every day?
Did my shoulder exercises and back stretches.
Walked 15 minutes.
Went to Kroger for organic meat and few other items I had coupons for.
Went to chiropractor. Back really hurt today. Now that I have a lot of pain, she can bill insurance. Hurrah!
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8887 | From Illinois | Registered: Aug 2004
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aklnwlf
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Home PT and the old arm routine then me and Mom headed to the wellness center. We had a different instructor and some new dances today for Zumba class so laughed through quite a bit of class today while my 2 left feet did their thing.
Almost made it through chapter 4 of my annuities course but it is very tough. I don't have my securities license and a lot of the info has to do with stocks, bonds etc. Interesting but hard!
NLIF glad you're still with us! Thanks for posting the info on Antabuse and the affects it's having on you. Are others able to tolerate treatment for the 4-6 months?
Hiker kudos on the walk! That kinda makes no sense that insurance will only pay for chiropractic care if you're in a lot of pain. What the heck? Hope you get some relief soon!
Well....off to watch some TV before bed! Night all!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6145 | From Columbus, GA | Registered: Jul 2004
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posted
I walked a little last night. Feeling maybe a little better. A little.
Someone else has posted in the Antabuse thread saying he had to stop for the same reasons as me, crippling depression. He also felt that the drug was working, though, same as I feel.
Hiker, I have a few friends I keep in touch with routinely and check in with from time to time.
AK, there have been very few published reports from those taking this medication. As I posted above, the one success story noted in the article I linked a few weeks ago had to have a psychiatric hospitalization during his treatment.
Here is a link to a study on three patients who have taken Disulfiram:
This is a summary of those three cases by Bartenderbonnie posted in another thread a few months ago: (Copy and pasted)
"Three patients, each of who had required intensive open-ended therapy for control of symptoms of chronic relapsing neurological Lyme disease and relapsing Babesioisi were able to discontinue treatment and remain clinically well for periods of observation of 6 - 23 months, following the completion of a finite course of treatment solely with Disulfiram. One patient relapsed and is being treated with another round of Disulfiram.
Patient 1 was hospitalized for psychiatric reasons during treatment. It has been reported that Disulfiram has occasionally been reported to cause psychiatric disturbance. Patient 1 didn't believe it was the drug's role, stating it was stress related.
Patient 2 had a syncopal episode ( loss of consciousness) requiring hospitalization for a concussion. It is believed it was a drug-drug interaction between Disulfiram and imipramine (tricyclic antidepressive).
Patient 3 suffered profound fatigue in the beginning of treatment, being unable to tolerate more than 125mg every other day. From January to April, doses were gradually increased, with April and May achieving full doses.(500mg). In November he still tested positive for Lyme and Babesia Microti.
A second coarse of Disulfiram was initiated in February 2019, starting slowly at 50mg every other day, with the intention to ramp the dose up over several weeks to 750mg/day, remain at that dose fir 90 days, then discontinue, then observe.
Patients 1, 2, and 3 agreed on Disulfiram 500mg/day for 90 days. Patient 1 and 2 weighed roughly 200lbs and treatment was successful, having appeared to maintain long-term remission. Patient 3 weighed 220lbs and suffered a clinical relapse of Lyme Disease after 6 months. A dosage adjustment has been made for his second round of Disulfiram.
Periodic surveillance labs were obtained, which included blood counts, chemistries, and urinalysis throughout treatment.
Disulfiram is generally safe. It has a long half-time, requiring one to two weeks for complete elimination from body."
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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posted
There is a Facebook Group for those taking Anatabuse for Lyme, Disulfiram for Lyme FB Group I think it is called, but I am not on Faceboook. Another Lymenet member has pm'd me and said that he is a member, and while there are over 1000 other members, not many have posted about their experiences and he has seen no claims of any miracles yet. It is still very early in the treatment for most people, though.
I don't think Antabuse causes bad mood changes for everyone, but based on what I have read and experienced, it does seem to cause them in a certain percentage of individuals, bot Lyme patients and alcoholics.
The drug affects Dopamine levels in the brain, so it should not be surprising that this is happening.
hiker53
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posted
Did my shoulder exercises and back stretches.
Also walked 18 minutes. Trying to build up the stamina I lost the past year. Will take time.
Went to Bible study. Smaller than usual group today, but I like having fewer there--more discussion.
Went to my nearby grocery for produce.
Also went to the Vitamin Shoppe but their nasal spray was $5 more than Amazon. I am not a huge Amazon fan, but if I can get something cheaper there, I will.
Sweet story: While I was out walking it began to sprinkle rain, so I turned and came home before the deluge. My neighbor saw me leave to walk but did not see me come back and was worried I would get caught in the storm, so he got in his car and went looking for me. How kind is that!
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8887 | From Illinois | Registered: Aug 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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aklnwlf
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I only did my at home PT today and didn't make it to the Y. On the final chapter, which is a bunch of forms, in my annuities course. Will easily finish up tomorrow then next week will type up all my notes and study from them.
Believe it or not I got sick to my stomach today and was throwing up! I very rarely have stomach problems and took Pepto and I'm already in bed at 7:30! Skipping dinner and will try to get some sleep.
NLIF glad you were able to walk a bit and are feeling better. Whew...that Antabuse sounds tough to take. Hang in there!
Hiker slow and steady wins the race! Way to go on adding time to your walks! You sure have some wonderful neighbors and I'm glad you decided to stay in your home.
See everyone tomorrow!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6145 | From Columbus, GA | Registered: Jul 2004
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hiker53
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AK— hope you feel better quickly. 😷
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8887 | From Illinois | Registered: Aug 2004
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posted
I started to feel better last night and actually woke up today and smiled a little. In researching the mood effects of Antabuse, several patients who needed to be hospitalized for psychosis returned pretty much to normal within 3 or 4 days of stopping the medication.
That seems to be what I have experienced as well. I have a little anxiety and depressed mood, but it is very low level now.
In addition, while stopping the medication and giving my body a rest, I feel as good physically as I have in a very long time. Last night when I walked I made it 3.5 miles and wanted to go farther, but I did not want to push it so I stopped.
I am convinced of two things. This medicine can cause horrible, horrible side effects along with the herxing, but it also is doing something against these Lyme bugs that nothing else has ever done.
On the Antabuse thread in Medical, for anyone that didn't see it, someone else posted that he had to stop because of horrible depression also. He also said this, though...
" 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 agree with him. My plan is to take another dose tomorrow morning and to keep going as long as I can. I made a commitment to try to get my life back with this drug and that is what I am going to do. If a horrible depression occurs again I might stop again for a bit or try to keep telling myself that it is just the drug and continue treatment.
Whatever this drug has done to me psychologically, I want to repeat that I feel as good physically as I have in a decade. If I can make it through several more months without being captured by the guys with butterfly nets, I think I can get well again, and I had almost given up all hope of that long ago. I am going to try as hard as I possibly can to not give up on this drug.
I went to the pool today and laid in the sun, it is 88 here today and will be 88-90 for the next week. The Lyme bugs don't like heat so I am hoping that the sun exposure also helps in evicting these rascals from my body. I couldn't swim as my shoulder is still hurting, i am hoping it is a pulled muscle or tendonitis and not something more serious.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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hiker53
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NLIF—Glad you feel better. Some day I hope to walk as far as you are now.
Lady backed out of coming to see antique chairs because she said it was too cold. Sheesh. It is Illinois and autumn. Not like we are having a blizzard and subzero temps.
Although 88 degrees sounds better than 40. 🤣
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8887 | From Illinois | Registered: Aug 2004
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aklnwlf
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Home PT and arm routine then me and Mom headed to the wellness center. We had a different Zumba instructor today and her routine wasn't as strenuous as Wednesday's instructor. Our usual gal had a root canal and is out of commission. Mom did 27 minutes on the NuStep and walked 4 laps today!
Been running errands after that and am heading out after rush hour, (any minute now) and shopping for a gift for a friend who's celebrating her big 5-0 tomorrow at the Dojo that her hubby runs.
The plan is to finish looking at the forms in chapter 7 when I get home....well, that's the plan anyway.
Hiker I'm feeling better today and think it might have been something I ate. I ate some leftovers from ATL's asian market that we frequent and think that was the culprit. I'm glad to hear that your back is better! BTW, send some of that cooler weather south please!
TuTu it wasn't a virus thank God! Glad you team is winning! I haven't watched not one football game this year! Told my hairdresser today and she said 'why not' and just said I was busy. My poor brain can't take it!
NLIF way to go on the 3.5 miles! Sure hope that whatever you decide to do in regards to your treatment is the right thing for you. I never did get to 100% and am dealing with mast cell issues now but feel so much better than before. Hang in there!
Off to shop!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6145 | From Columbus, GA | Registered: Jul 2004
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hiker53
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Shoulder exercises (which take at least 45 minutes) and back stretches.
Zipped to library.
Cooked and did a load of laundry.
Sold my 2 antique rockers. I didn’t ask much for them but avoided the hassle of trying to figure out how to get them to an antique dealer.
Walked around the court once and the cold brisk wind sent me back inside. Hard freeze last night and 30 mph wind gusts today.
Riley pulled out the yuccas but main root remains. I think it would have taken the bumper off his Jeep to get it out.
Charlie and Deb came by and moved a chair up the stairs to my living room.
Watching Illini-Michigan football. Illini will probably lose but I as an alum I have to root for them.
Tutu—are you watching Astros today?
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8887 | From Illinois | Registered: Aug 2004
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posted
AK .. I suspected a MCAS connection to the food if it wasn't a virus. Sounds awful!! I'm glad you are feeling better!
hiker .. glad the rockers sold and the yucky yuccas are out. LOL..
Yes, I will definitely be watching the Astros tonight. Our new pitcher who had trouble with the Rays will be pitching tonight. I think I'd better pray for him!!
FL .. glad you are feeling better mentally now. It's rough what Lyme and the meds can do to us.
I haven't done much today except wash a few clothes and make a quick trip to the store for more water. We are on a boil water order due to a water main break.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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aklnwlf
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Home PT then went to the Y. Walked 2 laps to warm up then did 10 minutes of rowing. After that did 20 tough minutes on the elliptical and stayed on an additional 3 minutes at a slow rate to cool down and get my heart rate down. I think that might be why I got so dizzy the last time.
Well...I had a bad reaction to a hot wing tonight. It was instant....flushed, got hot and started coughing and choking a bit. Could barely whisper and jumped up and got some water and felt some better. I have never had that happen before with hot wings! Might have to go back to not eating. I feel so much better when I don't eat......sigh!
Hiker that's quite a shoulder workout! At least you went out for awhile and got some fresh air and exercise today. Funny you mentioned the library because I got an email from my local library that my card is about to expire so I'll be heading there on Monday.
TuTu I seem to be having more food issues lately. The chicken wing issue caught me off guard. With a boil order can you cook with tap water? I buy our drinking water but cook in tap water. I'm spoiled from having well water for years and have a hard time drinking tap water.
Well gang I'm off to bed!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6145 | From Columbus, GA | Registered: Jul 2004
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I don't think I'm going to make Oktoberfest at Ft. Benning this year but am going with my Mom and her BFF to someone's home to celebrate towards the end of the month. I'm looking forward to it!![[sleepy]](graemlins/sleepy.gif)
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