posted
Hi Lymenet! We are a family of longtime lymies as you can tell from my member number. The struggle continues and this forum has literally saved my loved ones' lives. My daughter has recently begun to suffer from Persistent Genital Arousal Disorder (PGAP). I'm wondering if anyone else has experienced this. She's scared (age 24),and I'm thinking this must be neuro-lyme raging back. She also has pink-eye like sypmtoms, numbness in hand,cog stuff, and a small bout of eczema. Just so you know, we are longtime patients of Doc P. in Ct. Thanks in advance for any help!
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This has been very painful to me in the past. Better now - Berberine has helped. For me, also connected to "burning mouth" and to "vulvodynia"
There are threads here on both topics but I have to stop now - I can't find them in my file notes. I will check back tomroorw
I think Huffington Post did a very nice interview on this a couple years ago - on PGAP.
Yes, I most certainly think neurolyme, etc. can be involved. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I hope her LLMD can shed some light on this. Nerve entrapment, inflammation could be connected but really with lyme / TBD when any nerve systems is infected those nerves can all be on fire, so to speak.
Demyelination could be part of this as lyme can affect the myelin (coating around the nerves) anywhere in the body. But it can get better.
The patient advocacy groups might have some ideas but if they don't consider the infection possibility, they can miss the mark.
UPLEDGER INSTITUTE's cranial sacral therapy could be of some help for lower spine treatments if entrapment is involved.
Anything that puts pressure on the area such as riding a bike could trigger the cycle of pain, too. Even certain chairs were impossible for me at times. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm sure some personal care products have been considered such as soaps, etc. but tampons and such also need to be researched. So many of those contain very harmful ingredients.
A salve that helped me: HERB PHARM . . . or one that has MYRRH and GOLDENSEAL
Mentioned above that BERBERINE capsules helped me the most with this problem (and getting rid of my PT / Yoga Ball that I was doing more harm that good with). D-Mannose may also be of some help.
I have never had a LL doctor, though, so I hope you can get good guidance with yours. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
A woman in my local Lyme support group shared that her daughter was going through this as well.
The woman shared that her LLMD mentioned that there are a number of reports of this happening with Lyme.
I learned from her that there is also evidence that sexual functioning is altered by a number of other parasites, including Wolbachia, Spiroplasma, Rickettsia and Microsporidia.
Another possible cause is that it could be linked to restless leg syndrome or could be result of a Tarlov cyst, a growth that can appear on the spine and causes the symptoms.
I'd imagine that if it's related to one of the later mentioned, then demyelenation from Lyme could definitely have an impact like Keebler mentioned.
I'd like to pass on that the woman's daughter didn't have parasites or the cyst, so the LLMD suspected it was nerve related, "with some liver and blood stagnation"
The daughter is apparently feeling alot of improvement using a combination of Chinese herbs (including White Peony Root, Licorice Root and some others), and she uses a massage oil a couple times a day containing essential oils (applies to the base of her spine).
I remembered the essential oils because that's something I'm really into and these were essential oils I'm using myself with success for some neuropathy and pain. The essential oils were nervines and anti-inflammatories including Vetiver, French Lavender, Atlas Cedarwood and Australian Sandlewood (Frankincense was also used but the daughter didn't like the smell).
Also is your daughter taking any Essential Fatty Acid supplements or daily foods containing EFAs? This really helped clear up my husband's eczema and brain fog when added to his protocol.
We add flax oil and hemp seeds to a lot of the dishes we eat. Good Omega-3 EFAs, plus take an EFA supplement. I prefer getting what I can from food to cut down on number of pills I have to take!
All the best to you and your daughter.
Posts: 114 | From California | Registered: Jan 2016
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As the overstimulation of any nerve system is often helped / calmed by magnesium, you might want to assess the kind / dose / frequency.
posted
All of the above information is true but I have this to add. PGAP goes along with Neuroborrealis, including the inability to stand for very long, feeling when you stand up that your First Chakra is missing, pacing, lack of coordination, disorientation, etc. and it can be remedied by beginning abx treatment, i.e. Minocycline, Flagyl, etc. under the care of an LLMD or - Cats Claw.
Many people who have Neuroborrealis and are not treating for it will experience what you describe. When the body is under assault by a bacterium that is invading every organ and consuming it's collagen, the First Chakra which represents security and personal power, IS missing until it is fixed with the proper treatment. The good news is
that once remedies are begun, it is easily fixed. It's important to begin treatment before depersonalization sets I. and the person gives up and stops caring about treating the problem.
Posts: 653 | From Northern Virginia | Registered: Oct 2014
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posted
Another thing I forgot to add. Cats Claw is very powerful. I would never use it and antibiotics at the same time.
Posts: 653 | From Northern Virginia | Registered: Oct 2014
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posted
does your daughter do yoga? has your daughter experimented with chakras? has your daughter played around in the ocult? she could have opened herself up to a certain kind of yoga that will produce this type of thing..it happened to me when i used a healer with energy healing. there is only one way out though..is she experiencing depersonalization? this does not sound like lyme induced but spirit induced..let me know if you need to know more..
-------------------- been there done that! Posts: 93 | From ny | Registered: Mar 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- "occult?" . . . "spirit induced" - sharp disagreement with statements in post above.
Sounds like ancient times of witchcraft being blamed for medical conditions that had not yet been understood.
And yoga stretches and movements can be so very helpful in some ways for many medical conditions. It can also help lift the mood. There is no occult in yoga. It's a form of gentle exercise that simply also engages the mind in concentration & relaxation - for health.
Genital Arousal Disorder (PGAP)
most certainly sounds more like the cause connection could be lyme in a person who has been diagnosed with lyme -
PGAP is not black magic or evil spirits - not even psychological - certainly very much physiological. There are any number of infections that could be connected as well as nerve dysfunctions.
For those who are not familiar with the term, the condition Persistent Genital Arousal Disorder (PGAP) is very much a physical problem involving key nerve fibers, inflammation, etc.
It can affect anyone of any age. It is not sexual in nature even if it attacks nerves in the genital region . . . there can be many variables.
And, in case anyone thinks it sounds enjoyable, it is far, so very, very far from that. While there are various levels of this, some who are afflicted suffer tremendously. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
i have only given fact to you..you are mistaken..it is not about exercise but about the supernatural..it is a religion..if you do poses and chant then you are playing with spirits..and yes beyond any doubt pgap is caused by the dabbling of the occult..
-------------------- been there done that! Posts: 93 | From ny | Registered: Mar 2014
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Lyme is a disease of inflammation and it can really mess with nerves. I had horrible vulvodynia and interstitial cystitis for years.
Caffeine would make things way worse. It was hard to get off caffeine, but if I slipped, the vulvodynia and ic would flare horribly. I only drank lots of water and it helped.
Intense pelvic floor therapy with a specialist helped me, and I read that it can help with pgad. It could be something to check out. Best wishes.
Posts: 1431 | From USA | Registered: Mar 2015
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