Medical Forum / Diseases and Disorders / Lupus / December 2003
My doctor went to a convention
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Nicole H - 24 Dec 2003 07:26 GMT or whatever. Said something was mentioned about lupus actually being lyme disease (I know this has been a theory out there for a while). He said they were saying that lupus is actually lyme disease in a very late stage. The recommendation was Samento extract.
BTW, this doctor is a family physician (I hate rheumies and the meds they want me to take). So far, I just take Plaquenil for the lupus itself... and the occasional Depo Medrol dose pack. I refuse long term steroids or the use of mtx, etc (don't get me wrong, if my kidneys, heart, cns, etc was at stake, I'd take 'em in a heart beat). Hopefully, I have many yrs ahead of me and feel the use of these meds outweigh the positive effects for me. Anyways.....
Has anyone heard this? He said he thought there were a couple of studies on it but I haven't looked for them.
I've tried so many non traditional things... just hoping something would help. Thx Nicole
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J - 24 Dec 2003 10:59 GMT > or whatever. Said something was mentioned about lupus actually being lyme > disease (I know this has been a theory out there for a while). He said they [quoted text clipped - 11 lines] > Has anyone heard this? He said he thought there were a couple of studies on > it but I haven't looked for them. Hi Nicole, Here's my non-expert understanding of Lyme. Well the signs and symptoms might be similar (joint pain and rashes etc) Shelagh's going to "kill me", but I think Lyme is in the "differentials"(ie "is it something else?" or both) for Lupus.
My understanding of Lyme is one can get a round (bulls-eye) rash from the tick bite (but sometimes not) and thenslowly, over a period of years develop signs and symptoms and not know why. There is no clear blood test, because if a person has been bitten by a tick, whatever they look for could show in the bloodwork, without actually being symptomatic.. Lyme's treated in the acute phase with antibiotics. In the chronic phase, with longterm antibiotics. (my brother tried this and he was getting worse). FWIW
Samento extract appears to be somehow connected to Cat's Claw? (you'd have to ask an expert about that)..
If so http://www.aids.org/FactSheets/722-cats-claw.html http://www.rxlist.com/cgi/alt/catsclaw_faq.htm FWIW J
Nicole H - 24 Dec 2003 15:13 GMT I live in Central CA... no deer ticks here. Nor do I ever remember being bitten by a tick. I have spent summers in OK and OR.
Yes Samento is a form of cat's claw but w/o some ingredient. I really believe my dr is just grasping at straw's in an attemp to help. This Samento stuff is supposed to stimulate the immune system which has me leary of trying it.
Thx for your reply Nicole
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> > > or whatever. Said something was mentioned about lupus actually being lyme [quoted text clipped - 35 lines] > FWIW > J kcat - 24 Dec 2003 18:47 GMT Is there lyme disease in the near and middle east? In Africa? Where I believe lupus is more prevalent (though not necessarily diagnosed as such.)
Hard for me to believe that Lyme disease and lupus are one and the same given the localized nature of the ticks that carry it. I suppose if it can be show that it can be transferred by a ubiquitous critter than i'd be more open to it. But I have never been in deer tick territory.
no... sorry - I don't see this at all.
What I *can* see is that getting Lyme disease (as with any other illness or injury) could *trigger" the onset of lupus.
none of this says that the treatment for Lyme disease might not be helpful. That's a totally different issue.
my .02
>Has anyone heard this? He said he thought there were a couple of studies on >it but I haven't looked for them. [quoted text clipped - 3 lines] >Thx >Nicole J - 24 Dec 2003 19:35 GMT > But I have never been in deer tick territory. Where's deer tick territory? <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Retrieve&list_uids=2 758820&dopt=Abstract>
National surveillance of Lyme disease, 1987-1988. Regionally, incidence rates were highest in Northeastern and Mid-Atlantic states, intermediate in North Central and Pacific states, lower in the Southeast, and lowest in the Great Plains and Mountains states. The seven remaining states in which Lyme disease has not been transmitted all lie west of the 100th meridian.[]
but deer and ticks move around...unless they're shot on sight on TX. I know OK had ticks, don't know if they had deer (or not). Z lived Southern OK. (and people travel, over their lifetime).
The way I see it if a person is on longterm antibiotic and doesn't start to feel some symptom relief (or gets worse), then it's not Lyme, but I'm not an expert.
Merry Christmas KC ! J
Andy - 29 Dec 2003 20:09 GMT In article <3FE9EA77.5E5DC059@execulink.com>, J <BackHowe1@inv.invalid> wrote [
>but deer and ticks move around...unless they're shot on sight on TX. It's the customary greeting to strangers in these parts..
 Signature Andy [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!
Nicole H - 25 Dec 2003 09:25 GMT I'm in CA. I developed SLE when I was pregnant for the first time. After giving birth, I went on the Depo Provera shot. I'm wondering how all those hormones factor in.
I flare according to my cycle. I'm going to request to skip my monthly cycle (going to use Nuva Ring) and see if that helps. It's very low in hormones and my dr things it's not a problem. It has less hormones than the pill and much easier to maintain.
I guess I have nothing to lose by trying the Samento. BTW, I don't ever remember being bitten by a tick. We don't have lyme disease ticks here... but I have spent time in Oregon, Oklahoma and I think Missouri.
Thx Nicole
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> Is there lyme disease in the near and middle east? In Africa? Where > I believe lupus is more prevalent (though not necessarily diagnosed as [quoted text clipped - 23 lines] > >Thx > >Nicole J - 25 Dec 2003 10:12 GMT > I'm in CA. > I developed SLE when I was pregnant for the first time. After giving birth, [quoted text clipped - 3 lines] > I flare according to my cycle. I'm going to request to skip my monthly > cycle (going to use Nuva Ring) and see if that helps. I do believe there's a connection. I think the "lupus in men" mentions it, so why not for women too. In fact, I think KC mentioned noticing something similar.
I've also heard non-SLE women post-menopause mentioning worsening of symptoms according to cycles.. Something to keep in mind, but how would they know..unless they keep a record and watch for monthly patterns.
Let us know how it goes, might be important for others here. Hugs J
kcat - 25 Dec 2003 16:05 GMT >> I flare according to my cycle. I'm going to request to skip my monthly >> cycle (going to use Nuva Ring) and see if that helps. > >I do believe there's a connection. I think the "lupus in men" mentions it, so >why not for women too. >In fact, I think KC mentioned noticing something similar. Indeed - every 28 days begins a "mini flare" that lasts 4-6 days. Starting the evening after the first "non-hormone" dose or the next day. Starts with a migraine and joint pain that my regular meds can't touch.
>Something to keep in mind, but how would they know..unless they keep a record >and watch for monthly patterns. it could be done - my gp and I have talked about setting me up with an endocrinologist to try to figure out my pattern though of course that would only be one data point. but it's known. I just wish my rheumy and my ob would get together and discuss this. I know that it's worth *trying* the three-month pill (I don't know aobut the Nuva Ring and it's ilk). I'd rather try and fail than not try at all and potentially miss an opportunity to feel better a higher percentage of the time.
BTB - my sister went into a horrible flare when she tried the depo shots. They triggered extremely dangerous asthma attacks, migraines, etc. YMMV of course but for me, that doesn't sound like the right approach.
Nicole H - 26 Dec 2003 06:22 GMT I'm going to try the Nuva ring since it has fewer hormones than the pill. The pill has to go thru first pass and the Nuva ring doesn't. So you flare around your cycle too? I always have. My rheumy was the only one who didn't believe me. My other drs (family physicians) accept that and believe it. It's nice to be believed. LOL Depo Provera was just horrible!!! I share my horror story w/everyone that mentions it.
I am concerned about totally skipping my period that it will affect the calcium absorption. I do take daily calcium, drink milk, fortified oj, etc But I have read that skipping your cycle is bad. I'll talk to my ob/gyn about it more.
Thx Nicole
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> > >> I flare according to my cycle. I'm going to request to skip my monthly [quoted text clipped - 24 lines] > etc. YMMV of course but for me, that doesn't sound like the right > approach. kcat - 26 Dec 2003 20:15 GMT >Depo Provera was just horrible!!! I share my horror story w/everyone that >mentions it. [quoted text clipped - 3 lines] >But I have read that skipping your cycle is bad. I'll talk to my ob/gyn >about it more. however - doctors have been using a "3 month" cycle for many years with no indications that it truly is unsafe in anyway. Of course, since such use is not considered a "correct" use of the drugs, there isn't much in the way of data. US docs wouldn't report their findings on this because they aren't supposed to do it. But they do - prescribing the pill such that the patient misses two out of three cycles. In some contries, the 3-month pill has been approved for several years. data may be easier to come by in European medical journals.
There are some women who naturally have very erratic and loong cycles (two months or more.)
IMO - it's a matter of priorities - I would rather risk long-term *potential* problems (but of course do other things to try to prevent them such as supplemental calcium or whatever) than put up with the horrific pain that often accompanies my cycle along with the near-suicidal emotional turmoil that goes with it. Basically it's a quality of life issue for me.
As hubby would say - would you rather have a horrible ending or horrors without end. I vote the former.
kcat
Nicole H - 26 Dec 2003 23:05 GMT That's what I have a hard time with.... quality versus quantity of life. I'm 28, dx'd 8 yrs ago. So I would prefer not to cause problems now that will have horrible effects later. I'm going to make an appt w/my ob/gyn and get his opinion. The every third month thing could work. The week before my cycle starts, I sleep all the time, horrible joint pain (even w/pain meds) etc. This could really help me a lot! I hope it does. The nuva ring looks like a no brainer so that's even better.
Thx for your input Nicole
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> > >Depo Provera was just horrible!!! I share my horror story w/everyone that [quoted text clipped - 29 lines] > > kcat Cindy - 27 Dec 2003 00:03 GMT And we do have lots of ticks in Oklahoma. But like J said, I think that a blood test would show positively that you have lyme. Cindy
> I'm in CA. > I developed SLE when I was pregnant for the first time. After giving birth, [quoted text clipped - 41 lines] > > >Thx > > >Nicole Nicole H - 27 Dec 2003 03:51 GMT My doctor was saying that the blood test isn't very reliable for Lyme Disease. Said just because your IGG isn't elevated, doesn't mean you don't have Lyme. I just don't know Nicole
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> And we do have lots of ticks in Oklahoma. But like J said, I think that a > blood test would show positively that you have lyme. [quoted text clipped - 48 lines] > > > >Thx > > > >Nicole J - 27 Dec 2003 07:15 GMT > My doctor was saying that the blood test isn't very reliable for Lyme > Disease. Yes, that's basically what I said (with maybe some exceptions, but I'm too lazy to look it up)
> Said just because your IGG isn't elevated, doesn't mean you don't > have Lyme. I'll take your (doctor's) word on that.. J - with lookitupitis
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