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Re: Immunotherapy for endo?
From: Alyson (anonymous@obgyn.net)
Thu Sep 7 15:42:24 2006
Jenn,
Thanks for the clarification. It does help to look at it in those
terms.
I have actually had a terrible time with hormones. Back before I was
diagnosed I took Ortho Tri Cyclen for several years with no problem. I
went off the pill b/c I had no insurance. That's when I started having
all of these problems. Got diagnosed via lap in August '04 and put on
Seasonale. I suffered through that for a year. Had another lap during
which it was apparent that the endo went gang busters while on
Seasonale. Started Aygestin immediately after the second lap...no
result. My doc increased the dose...no result. Then he switched me to
Danazol...no luck. Finally he told me I had to go on Lupron and if
Lupron didn't work that would mean it isn't the endo causing the
problem. I was still adamant about not taking it.
So, I've been seeing a GYN now that does "traditional" and natural
medicine. She has me on natural progesterone cream and I am trying to
adjust my diet. I haven't noticed much change except that I no longer
have as many of the side effects as the meds seem to have cleared my
system. I've ordered the books from Endo Assn. Just haven't gotten to
the one you've referenced yet.
I actually went to an immunologist regarding allergies, but nothing ever
came up about allergies to hormones. It might be worth persuing with
him again.
Thanks again!
Alyson
At Thu, 7 Sep 2006, anonymous@obgyn.net wrote:
>
>Hi Alyson,
>
>These are adjectives I have strung together because of what I've
>learned. "Symptomatic" comes from the fact that my first GYN told me
>that the majority of endo he sees is in women who don't have pain, he
>finds it when he does laps for infertility. We don't hear much about
>this kind of endo, because it doesn't drive women to seek treatment,
>except when they are trying to get pregnent.
>
>What we have is "auto-immune" because in symptomatic endo our immune
>systems are responding to our misplaced internal bleeding with
>inflammation. Inflammation creates pain. See chapters 4 and especially
>7 ("The Immune System: Part and Parcel of Endo") in Mary Lou Ballweg and
>the Endo Assn's _Endometriosis: The Complete Reference For Taking Charge
>of Your Health" (2004).
>
>I'm wondering if you do ok with hormones? (Studies have shown that the
>vast majority of us are allergic to estrogen, progesterone, or LH.
>Deborah Metzger MD in CA says she's had some success at neutralizing
>these allergies.)
>
>Has anyone tried immunotherapy for endo?
>
>Jenn
>
>At Thu, 7 Sep 2006, Alyson wrote:
>>
>>Jenn,
>>Can you explain "auto-immune symptomatic" endo? I have never heard the
>>term before and I know what auto immune means...just not how it relates
>>to the endo. It would be great to have a better understanding of that
>>since I seem to be in that group with endo that doesn't respond to
>>treatment. (and with doctors who don't seem to think that's possible)
>>Thanks a bunch!
>>Alyson
>>
>>At Wed, 6 Sep 2006, anonymous@obgyn.net wrote:
>>>
>>>Hi Susan,
>>>
>>>The first GYN I saw was an RE and his main business was infertility. He
>>>said that he found endo in 60% of the women he operated on and the
>>>majority of them had no pain. I don't know what the overall ratios are,
>>>but as far as I can tell there exist at least two forms of endo 1) endo
>>>where the only presenting symptom is sub or infertility and they find it
>>>surgically and 2) the auto-immune symptomatic painful endo that drives
>>>most of us who post here. You can have endo without pain. I don't know
>>>how much of this physiology is known, but my guess is that if the endo
>>>toxins are seperate from the auto-immune inflammatory reaction that
>>>causes then pain, then you can have endo-fatigue without pain. Really,
>>>though, call a specialist (I can give you some names over email). Some
>>>specialists will even review your records and talk to you over the phone
>>>for free.
>>>
>>>I'm afraid I know nothing at all about the E-Barr virus. If I were in
>>>your shoes, I'd go to webmd or the nih site and look it up.
>>>
>>>I had 12 years of debilitating pain before getting "diagonsed via
>>>Lupron" (as I've said before, I advise against Lupron). This disease is
>>>frustrating, as if the fact that so few doctors are up to date on all
>>>that is known about it (esp. in the USA country...the UK, the
>>>Netherlands, New Zealand, and China all seem to be ahead on this
>>>disease). It makes me so terriably mad.
>>>
>>>FYI, I'm sitting up reading about endo right now, and I'm looking for
>>>people to talk to, so if you want to talk, email me and I'll call you or
>>>send you my number.
>>>
>>>Jenn
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