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Hi All. I have had some aches/pains and inflammation over the last few months. I am questioning if I should go off Minocycline and go on another antibiotic or simply go off antibiotics for a bit. I have some fluid retention in my legs which makes it difficult doing stairs. I am frustrated. Please offer any advise you have. Thanks so much, JoAnn
Hi–do you take 200 mg daily of minocycline —-I had fluid retention in legs when I first got sick –I was prescribed a mild diuretic which solved the problem —
richie@JOJO19551 wrote:
Hi All. I have had some aches/pains and inflammation over the last few months. I am questioning if I should go off Minocycline and go on another antibiotic or simply go off antibiotics for a bit. I have some fluid retention in my legs which makes it difficult doing stairs. I am frustrated. Please offer any advise you have. Thanks so much, JoAnn
Hi Jo,
Nice to hear from you, but sorry you’ve hit a wall. I had massive swelling in my legs and it was difficult to bend my ankles and knees making stairs extremely difficult. As you know, circulatory problems are very serious. When I plateaued and was looking for answers I tested for Lyme and then treated for Lyme. Once I realized Lyme induced my SD it all made so much more sense and since treating for Lyme (Mino is not enough) I now have my life back. I’m just sayin’……….you live in Lyme country! 😉
Good luck, Jo, hope you can get some relief soon.
Take care…..kim
Thanks Kim and Richie. I do take a mild diurectic for my blood pressure. I started to use my infrared sauna more often, as I became lax with it for a few months. Climbing stairs is such a chore, which is very frustrating. I want to be better!!
Are you on a calcium channel blocker?
Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"Hi Randy, hope you are doing well. I am not on a calcium channel blocker. I stopped that two years ago due to fluid retention. I take grape seed extract for my Raynaud’s and do quite well with that. I am wondering if my potassium is low again. You can have fluid retention with low k+ and your legs would hurt. I am just going to start taking potassium supplements and hope to see fast improvement. I will let you know. I can’t tell you how much of a chore a set of stairs is. My legs feel like two big weights. Frustrating!! JoAnn
Hi, JoAnne,
MAy I ask how much grape seed extract are you taking for Raynaud’s, what brand and what else are you taking for it (from supplements)?
Grapeseed extract I use is GNC. You are to take 50 mg for every 50 lbs you weigh. I take 50 mg twice a day (I weigh more than 100 lbs). It really works.
I just started taking GSE this week…..I take 1 capsule from GNC…..the temps here are in the 20’s and now that you mention it my raynauds has not flared at all this week…crazy!!! I know I find more flares in the 50’s. I dont know but I think it maybe working.
Thank you so much for this information about GSE, I am right in the midst of a really bad Raynaud’s attack and my feet are snow white… I have GSE on hand but have never taken it before… having read your post, I took 50mg right now! I’m hopeful it will work for me too.
As for your setback, I think Kim may be on the right track with lyme and/or co-infections. The interesting thing to me is that you respond so well to GSE… because my LLMD Dr. Y usually combines GSE with zithromax and artemisinin to attack babesia. It is supposed to be quite effective for that. Have you looked up the babesia symptoms? I wonder if you have any.
Well, thanks again for the GSE tip… we’ll see if I flare! Take care and all the best, A
@hopefulmama wrote:
… I have GSE on hand but have never taken it before…, I took 50mg right now!
AIt’s funny how Grape Seed Extract jumped into Grapefruit Seed Extract!
My LLMD says he advises everybody who starts on GSE to go VERY slowly: start only 2 days a week, just 5 drops twice a day and do it on days one can stay in bed, because the reaction to die off may be so huge that one will not be able to get out of bed for a couple of days! I don’t know how 5 drops translate to milligrams…..
My best, K.Thanks fot eh GSE tip, JoJo- I used to take it but stopped becasue I was taking so many supplements, I thought I could omit this one.. Mistake.. I think my raynaud’s was indeed better when I was taking it… I knew it was good for rheumatics but didn’t know it was spesifically good for Raynauds. I’ll restart immediately as per the dosage you recommended. Thanks!
Hold on – so for Raynaud’s we are talking about Grapeseed Extract correct, not Grapefruit Seed Extract?
Do we have to go slowly with the former or the latter? 😕
Cheers,
Aynur
Good morning all;
How are you all liking the weather these days.WHEW! it has been nasty here in Canada and I hear those south of the border have not been faring much better.We had 2 days of pounding rain and as of yesterday the temp dropped to -18C.Since -30 C and F are the same you can get an idea of the cold.That rain changed to blowing snow and I spent all day yesterday shoveling waist high snow and not a trace of Raynauds despite semi frozen fingers and toes.I switched from grape seed extract to resveratrol which is a more concentrated grape extract and it does make a difference for me.My Raynaud’s has not been bad for the last few years but doing that much work in those temperatures would always bring it back after a couple hours.
I think you are confusing grapefruit seed extract with grape seed extract.GSE is an anti fungal and works on the gut.Any grape product works on the venous system so have that glass of wine with supper.CHEERS!Hy Lynne,
Wow, sometimes I feel I’m blessed for God sending me to live in the Middle East… Going back home to Baku in a weeks time, hoping to catch some snow there for the kids… I could easily do without it 😀
Impressed about your fingers… I also take resveratrol, actually. So I don’t need to take them both at the same time then! I’ll keep the grape seed extract for when I’m out of resveratrol…
My Raynaud’s shows up every time I feel cold or just chilli. I don’t feel colder than others, i.e. when I’m cold others are also cold so I think it’s a good sign… When I’m out on frost but well dressed/warm, my fingers even if they get very cold (from touching snow while still wearing gloves) never turn purple – they just get cold and red like normal peoples’ and with time (30 min) regardless how warm my body is, my fingers will start feeling numb and hurt increasingly but still red, not purple… I’m not sure whether I’m having Raynaud’s? My normla Raynaud’s attack is just turning purple without any pain and then back to normal again… Nowadays, if I take stuff from freezer and it involves shuffling few things around there for quite a while to get what I need or re-arrange things, my fingers although hurt stay normal… This started even before AP… It’s just when it’s a bit chilli when I get Raynauds, not from a real cold-frost.. Isn’t it wierd?
I think we are all clear on grape seed vx GSE! Thanks for the clarification and giving the hint about resveratrol…
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