Is there anyone else out there who's suffering from vulvar pain disorders while doing Lyme treatment? My LLMD actually diagnosed me with Lyme when I went in to see her about my pain disorder.
I would love to hear about any progress anyone has made with the Lyme treatment and their pain. Sometimes I feel like it's hopeless
Thanks in advance! bsm
Posts: 20 | From Chicago, IL | Registered: Mar 2006
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posted
I had bad vulvar pain before I got yeast under control. I had severe ovarian pain and all sorts of gynecological problems before finding out I had Lyme. I'm in my 20th month of treatment and have made enormous progress.
Ovarian pain and painful periods are gone as are many other pains I'd lived with most of my life. hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
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bettyg
Unregistered
posted
I've had this problem for many years. In lyme treatment 20 months too, but since beginner LLMD said nothing about using probiotics, sp, I've never used anything.
But taken rx meds for yeast/fungus: diflucan & 1 other thing.
Perhaps 1 of my 18-20 blood tests taken last Thurs. might come up with something else; who knows? To read about my story, look for my nickname, and saw new LLMD out of state & feedback as topic title or something like that. I went into detail at the end of ALL blood tests done for each lab using a copy of the sheets I signed for LLMD.
I have 4 more boxes to do this week at hospital! Bettyg
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cantgiveupyet
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Member # 8165
posted
I started having vulvar pain in January a month after starting doxy for lyme.
i believe this is where the lyme is hiding out as it is the best place for it to survive.
i was diagnosed in March 06 with vulvar vestibulitis.....i had a ton of burning, which has subsided since i treated for yeast and im on the low carb diet.
It still is not right in this area, one infection after another and i cannot stay on lyme treatment.
also it was so bad i couldnt tell if i had a yeast infection or if it was lyme symptoms.
my bladder is also very badly affected.
I do know others who had these problems who have gotten better, im just not there yet.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Most likely is a neuropathy. And yes- could likely be Lyme neuropathy. But most DOcs won't go there- more likely treating it in different ways. Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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klutzo
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Member # 5701
posted
DITTO! I was dx'd with VV about two years after I became ill. It was not related to ABX, since I've never taken them....I'm allergic, and only use herbal tx.
I had a deep tissue scraping done which showed that mutated yeasts deep in my tissues were the cause of my VV.
A low carb diet, and lots of probiotics have helped a bit, but what really helped most was a prescription for compounded boric acid suppositories, twice weekly until under control, then once every two weeks or as needed. They are cheap, about $25 for a 2+ month supply.
I was also told to take a capsule of vitamin A, prick it with a pin and spread it over the sore vulva at night. That helped too, but stunk to high heaven, so I switched to plain old "A & D ointment". I am told vitamin E capsules also work.
After a couple months of suppositories, I no longer needed anything on the outer skin. It still gets sore sometimes, usually when I've been cheating on my diet a lot, but it no longer hurts at all to insert the suppositories.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
My vulvar pain resolved when I became very strict on the anti yeast diet. I could not cheat at all for almost a year. The littlest bit of flour or sugar would set off swelling, burning ... Now after a year I am able to add more foods to my diet without negative results.
I ate primarily vegetables, nuts, eggs, meat, fish, limited amount of cheese. Everything organic, low mercury, grass fed...
Absolutely no fruit, sugar, flour, grains. I was able to have a small amount of beans & rice occaisionally.
I take probiotics every night. The turning point came when I discovered Theralac (not Threelac) www.theralac.com It worked so much better and stopped the vulvar pain quickly.
I soak in Epsom salts almost everyday. This seems better than showering and using soap.
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
I had Vulvodynia (horrible burning) back about fifteen years ago as part of Chronic Fatigue Syndrome.
Thank goodness it has not been an issue ever since I contracted Lyme three years ago. I can relate to the excrutiating pain.
Back when I used to attend medical conferences for patients with vulvar pain disorders, many practitioners recommended Low Oxalate Diets. I never tried it - I tried more of an anti-candida approach. But many said the low oxalate approach worked.
Also, some patients tried to modify their body pH through an alkaline diet or alkalizing drops in water and some said that helped.
The most helpful organization to me was the VP Foundation (Vulvar Pain Foundation). This was back before the days of websites, but I believe they are still in existence.
I hope you feel better soon! Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
Thanks so much everyone! It's great to hear that I'm not the only one, but I'm also so sorry for all of you who have to deal with this pain. There's nothing worse, in terms of an extreme pain syndrome that's almost impossible to talk about, since it's so embarrassing. I've had vulvar vestibulitis and vulvodynia for over a year now. That's how I was diagnosed originally--I'd been to seven vulvar specialists all over the country and nothing helped. My current doc (an LLMD) has made a connection between vulvodynia and Lyme. She's found that over HALF of her patients with Vulvodynia have Lyme!!
I've tried all of the suppository stuff--did the Boric Acid for several months, as well as other compounded suppositories. None of these helped. Currently my doc is having Nizerole compounded for my yeast problem, and Lidocaine compounded to numb the area. It's important to interrupt the pain signals, since pain feeds pain. These seem to be helping marginally. I'm also doing physical therapy with biofeedback and electrical stimulation. I know Dr. B says no ES, but for this specific problem I really need it--my pelvic floor muscle spasms are so severe that I can actually feel my bladder contracting. I need ES to interrupt these spasms.
It's good to hear that some of you are having success re: vv and vulvodynia as your Lyme treatment progresses. I've only been doing treatment for 4 1/2 months (I was just diagnosed in November), and every time I herx, my pain increases 30-fold. I get to the point when I herx where I cannot walk at all. It's just so frustrating, and I continually end up wondering if my pain symptoms are going to clear as I continue w/ my Lyme treatment! Posts: 20 | From Chicago, IL | Registered: Mar 2006
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi again, bsm,
I'm glad you posted about the biofeedback/electrical stim for pelvic floor dysfunction. When I posted above how I used to go to vulvar pain conferences (this was a long time ago), I had totally forgotten that biofeedback and other modalities with a physical therapist was highly recommended regarding the pelvic floor muscles. So I'm glad to hear it's on your list.
Good luck! Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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cantgiveupyet
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Member # 8165
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Jill- do you know what types of excercises were recommended.
bsm-where have you been the last few months...im so glad you decided to post this. I too have severe pain when i herx...i can barely walk either...just going shopping for food is horrible.
then when i have pain in the vulva , i cant tell if i have to urinate or not. My pelvic muscles get tighter, and i have no muscle in my left pelvic area.
I can only hope that for both of us the pain subsides with treatment.
My vulva specialitsts says i was going to get this anyway and from her experience lyme just makes it worse (well i dont believe that one bit) there has to be a cause.
have you tried the estrogen based cream, that seemed to help me a tad.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Cantgiveupyet -
Sorry, I can't remember what the specific biofeedback exercises were - it was so long ago.
I think it had to do with learning to relax the pelvic floor muscles, kind of like reverse Kegels - trying to relax rather than tighten up.
I just looked up the Vulvar Pain Foundation which was so well-informed back when no one else would talk about this.
They do have a website at www.vulvarpainfoundation.org however I have no idea if any of them have linked vulvar pain and Lyme.
Back when I used to be a member and get their newsletters, attend conferences, etc., the link seemed to be with fibromyalgia.
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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