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Thanks!
I found 500 mcg on this web site – I can cut them in half and that should work.
First, I'm going to give myself a rest from the melatonin and then re-try this dosage.
Thanks,
kmlThanks to all of you for your kind replies. When I mentioned to friends that I was asking this community about Lyme, they basically told me I'd been in denial for a while and to get off my lower body part and look into it.
Also doing stretching and will look into bioidentical hormones in a bit.
Appreciate all the support and thanks a million,
klogan
Maz, thanks for the great answer. I probably should really check into lyme. I have lived in NY state my whole life. As kids we were always covered with dog ticks. We used to pull them off, pick off their legs, and leave them to suffer. My mother was horrified and pronounced us monsters. Anyway, a couple of fears hold me back from looking into lyme:
- Insurance – don't think the lyme specialists or Igenex tests are covered and an initial consult around here is $500. So if I do it, I really need to trust the person and will come to you for a couple of names.[/*:3n98nrbc]
- Lyme medications – I am sensitive to mino/doxy and had a mino or doxy induced lupus reaction that was kind of scary. So not sure a full lyme dose of doxy will work for me. Also had a full body rash and depression reaction to plaquenil and am wondering what the other quinine drugs will do. But that was perhaps a herx – couldn't get the doc to agree to start on a really low dose. (That was my old rheumy – now I use Dr. W in Berkley Heights).[/*:3n98nrbc]
- Igenex – my rheumy is not a fan of these labs and thinks their work is not always creditable. But I have not researched this myself, and I very much respect your opinion.[/*:3n98nrbc]
So, I think what I should probably do is get a couple of recommendations for lyme docs from you and trust their recommendations about the medications and lab stuff.
I feel like I'm jumping down a large hole for some reason – taking a lot of time and money with me. But all the good wishes from this group as well.Thanks a million,
kmlI moved to doxy after having a reaction to too much mino, or maybe too much mino and doxy. I was on both because my rheumy likes the combo. I then tried to address a flare by doubling my dosage of both and inadvertently brought myself up to 100mg of mino but 200mg of doxy. The combo brought on a med-induced lupus that took months to recover from. Now I seem to do best on under 100mg of doxy. Not sure how that will work with possible lyme treatment, but guess I have to cross that bridge when I come to it.
My feet hurt mostly in the ball and sore toes, the big toe joint the worst. But my calves tend to be tight, stiff and sort and I have tendonitis in one achilles tendon. Stretching absolutely is going to help with that.
Might look into the hormones.
Thanks for the answer!
kmlCan be a great drug I hear. I think that rheumys often do not start at low enough dosages (standard dose is 200mg) and so the usual sturm und drang of herxing can be a bit much.
I started with 200mg and after three weeks I was a mess – full body rash, depressed, digestive trouble. The doctor called it an allergy, and maybe it was, but I think it could have been a herx. I was unfamiliar with the phenomenon at the time and she was a non-believer.That's my experience, but there's got to be somebody out there who knows more!
I think it is helpful to have pain and inflammation under control before starting LDN, which is meant to modulate the immune system to help fight the disease.
I don't have a lot of pain at this point – feet, hands, and back hurt a bit at this point. MY rheumy is not too enthusiastic, he says he uses it for a few connective tissue diseases. I think he said (didn't talk to him myself) that he prescribes 40mg – seems unlikely.
Well, I can ask him about it next time I see him. Hard to know when to try something new. I find I'm a bit of a sucker when it comes to new miraculous drug ideas. Now I'm pretty conservative.
Thanks for your answer!
Don't be too tough, keep an eye on yourself. A massive herx is not necessarily good for you. Look out for signs that the mino has set your immune system into overdrive. For me that included swelling of every past scar, a sore throat that never quit, depression, muscle pain, dizziness, ear ringing, spots in the eyes, brain fog, fatigue, and so much more!!!! In the end I developed mino-induced lupus, which is unusual.
100mg twice a day is quite a bit. So just really keep an eye on yourself. I had to learn that for me, more is not necessarily better. We're all different, so I'm hoping you're just fine. But it might well be worth backing down to once a day.Lots of doxy users out here. It's worked for lots of people. I am hoping it's working, not totally sure. I tried mino and doxy together and when I upped the dosages a little too far too fast, had a heck of a reaction. I think it was part herx and part just too much. We assumed it was the mino, so I'm trying the doxy. I'm okay if I stay under 100mg. Right now, I'm on 50mg MWF.
But poke around the bulletin board – other people have asked this very question. There are people on doxy dosages as low as 25mg and up to about 200mg.Didn't like parts of this article. I do think yeast overgrowth is a problem, but this information is a little vague, a little alarmist, and a little product-salesmanship:
- Health-Truth – that's a little cocky, makes me suspicious[/*:cihk1cef]
- The list of symptoms of yeast overgrowth is 75 items long and vague. It looks to me as if life is just a side effect of yeast overgrowth.[/*:cihk1cef]
- It gives no idea of how to control candida besides the ungrammatical warning “DO NOT KILL CANDIDA THEY MAKES IT WORSE!!” So, what do I do? All they recommend is to buy their product/system.[/*:cihk1cef]
I dislike this kind of thing, because we chronic illness sufferers are always looking for a cure, and I hate that I want to fall for this kind of thing every single time. Sigh. I'm sticking with the long slow eat-well, AP, excercise, etc method.
The advantage of the pearls is that you don't have to refrigerate. The disadvantage is that they bounce around madly if you try to put them down on a counter/table or pill container. Then they are so small that I can't find them on the floor. That is my unscientific summary of acidophilus pearls.
It might be worthwhile to talk to your doc about starting with a smaller dose, like 50mg, since you're clearly reacting to 100mg. Give you a little more time to sort it out…
My skin has hurt at times since I was a child. Areas of my skin become exquisitely sensitive without any redness or swelling. It seems to be called hyperaesthesia (sp?). And naturally, no one knows what causes it. It often starts in my ankles, works it's way up my legs and then crawls inside to cause some VERY odd sensations in my genito-urinary area. Then, my lower back.
One of the weirdest things is that it responds to emotion very strongly – if I am having hyperaesthesia and hear of someone being injured, for example, all the patches of affected skin will throb. It's a little eerie.
