posted
Let's Talk About Sex, Baby! Who said it betta than salt n' peppa?
Seriously,
I have had some chronically ill friends (many) with difficulties when it comes to sex and Lyme, and I wondered if ya'll have some of these too. I noticed the last posts that came up in my search were from 2005 and 2006. Has there been a scientific advanced since then that I need to know about?
In case there isn't. I'll through out some concerns we've discussed to "get the ball rolling'.
1. Medications particularly anti-depressants, depressed many peoples libido, and since they can't go off of them, they need to find a way to make sex befriend anti-depressants. (they've tried herbs, lotions, potions (#9), vibrators, instructional DVD's, 2 boyfriends, no boyfriends, hormones therapy, Chinese herbs, L-Arginine... everything but Viagra)
2. The urge to pee during intercourse due to a sense of fullness in their abdomen? A sense that you don't want pressure in or on the abdominal area?
3. Tipped uterus- I've read that about 1/3 of women have this, and it can cause the penis to come into contact with the cervix during intercourse (oooch!) I wish there was a way to put it "back" (or front as the case may be), without surgery. Some doctors just recommend having sex rather gingerly in the most comfortable position possible.
Would anyone care to share any of their joys or concerns on the topic of "how to have a healthy sexual experiences in a less than healthy body?"
Posts: 60 | From Barrington, RI | Registered: Oct 2003
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Viagra works for women, too and enhances arousal. I'd GUESS that if you had libido or physical problems due to antidepressants, that it would help, but I have no experience in this.
Caveat: I've used it out of curiosity just got some 'from a friend', and I"m not sure if a woman can get a prescription for it or not.
I also don't know if there's a Lyme reason to avoid it- I just tried it for fun.
I think it's important to use very small doses otherwise you can get a nasty headache (which I think is the case for men too?).
-------------------- Symptom Free!!! Thank you all!!!!
posted
Don't know IF a man is allowed into this confab or not.
But I tried Viagra when I first came out and it worked on 2 out of 5 pills. BUT I hated the side effects.
I also tried the 36 hour pill and that did NOTHING for me, only side effects. Levitra did work a little bit better than Viagra, but not much more and still had side effects.
I like Yohimbine best. Though it isn't quite as strong as the others, it doesn't have near the side effects either.
I use an appliance i invented along with it, and get by fairly good three times a week.
I am 65, which makes some difference. But I also have an ileostomy which was the main thing that affected me.
I don't know HOW MUCH Lyme has any affect on sexual drive. I think maybe some of the abx some take might be the main culprits.
posted
Interesting results you guys, and yes, of course men are welcome to chat- the more the merrier.
Hmmm Viagra, it does sound like fun. I don't know anyone who has it (unless perhaps my dad has a wild side that I never knew about:) I don't know if it can be prescribed for women either.
I wondered if you guys don't mind sharing what types of relationships are you guys in (single, just married, married for 87 years, bi/lesbian/gay, etc.)
I am 27, and began a relationship about 3 and a half months ago--
Posts: 60 | From Barrington, RI | Registered: Oct 2003
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I'm a 23 year old male, currently single...ish. My last relationship was ended a couple of years ago, by things related to my diagnosis with lyme. This info is all old, as I haven't made use of it since that relationship and my treatment... so I'm not sure if things would be the same if I tried now.
Even when I was undiagnosed an newly diagnosed, I've had a really good urologist, who has been willing to give me viagra, levitra, and cialis. I've had some ED problems from being sick, so these were a good first step. It is important to note that none of these drugs just "give" a man an erection - there has to be desire and stimulation (mental or physical etc..)
Viagra - Four hours worth of effects. 25, 50, 100mg. I suggest 25 or 50, to start with. Take on an empty stomach if you can. It may make your nose stuffy and your face feel hot. Some men report that viagra gives a more "powerful" if more short lived effect than other drugs.
Levitra- Hated it. Took it twice...had such a headache, never again.
Cialis - Approximately 24-36 hours worth of effects, depending on metabolism. 5, 10, 20mg. I don't think that the side effects with cialis are as bad, but I still get a stuffy nose and a warm-feeling face. Multiple attempts are a go, and refractory period is shorter... I think. Your mileage may vary.
There are also a number of herbs that can improve sexual function. Yohimbe, for instance, increase blood flow and pressure. It tends to make me sweaty and give me palpitations, so its not my herb of choice. Then again, I haven't really gotten used to it. Both genders can benefit from ginsengs, fish oil, and a good multivitamin. Men can benefit from saw palmetto, pygeum, and zinc. L-arginine, if you don't have any EBV, CMV, or HSV active infections, and provide a good boost as well. There are also topical l-arginine based liquids that can be applied directly to the vulva to make it more sensitive.
Another good resource is a nice, simple diet by a woman who calls herself Zaneblue. I've interacted with her on a number of forums and she's really a down to earth, helpful person. For women especially, this diet may improve sexual enjoyment. You can find out more at www.zaneblue.org
I'm probably forgetting something.. but if you have any specific questions let me know and I'll try to find answers.
Posts: 691 | From East coast, USA | Registered: Jun 2006
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Vanilla
Unregistered
posted
Not to put a damper on anyone's sex life but some people die from Viagra use. A kid in his 20's was recently staying at the Belagio in Las Vegas and he took some Viagra and had a heart attack and died. Just a reminder to be careful and read about all the side effects before using it. I wonder if it is even really safe for LD patients to take it?
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I really haven't had any physical problems I could attribute to Lyme, other than extreme tiredness, which brought up a communication/negotiation issue that I think is probably pretty universal to chronically ill people. So I'm going to blab about psychology and coping mechanisms now.
I know there are a lot of psychological issues related to sex and disability, and there are also some good writings on the subject by people with various kinds of disabilities.
To answer the background question, I"m bisexual and 35, and was near-disabled with Lyme for 6 years until treating it last year. I dated both men and women during that time.
a few of the psychological issues related to Lyme that I had to work through:
-exhaustion and "rejection": For the previous 6 years with various partners, there was some negotiating involved about timing because I'd be so damn tired in the evening that I"d pass out the moment I got in bed, AND couldn't necessarily wake up in the morning (needed 14 hours of sleep!) so if my partner had a morning job to get to, it was hard to schedule time for sex.
-scheduling time for sex: We actually attempted to schedule afternoons/early evenings specifically because of this exhaustion issue. This seems like a good, stress-reducing sort of thing for couples to do anyway no matter whether you're sick or healthy- feels like being on a date or something.
-"rejection" and new partners: The main thing I had to be proactive about with new partners is to make sure that people didn't take it personally if I was too tired to have sex.
Even if they said "they understand", it is definitely disappointing to be out on a dinner date or whatever, get home, and have your sick partner pass out in a Lyme fog. Ugh. And from my perspective, I'd feel guilty about it. Double ugh.
I can only imagine that this is more difficult if you're dealing with younger, less mature people, who may be worse about 'taking things personally'.
-'Drama' and not having the energy to do a lot of talking about emotional subjects:
Luckily I dated very understanding people and was in two two-year relationships during that time. I think I would not have stayed in one of the relationships (kinda dumb guy, who I think will never read this forum!) were it not for me being chronically ill- I just didnt' have it in me to leave because of all the logistics of separating our lives and going through the inevitable drama. I can imagine that this would have been REALLY bad if the person was abusive or irresponsible or otherwise 'bad for me'.
Another thing I noticed with my illness is that I now have had MUCH less tolerance for drama- maybe that's just age showing, I don't know.
At the beginning of the Lyme disability, when I didn't know what the hell was happening to my health and was somewhat depressed, I was briefly dating a girl who was much younger and a bit of a drama queen. The 'it's not you, I'm really just tired' explanation was very difficult to negotiate with her.
I sorta think women sometimes take sexual rejection issues more personally (but with the exception of this girl, they also tend to be more mature on other emotional matters than men of the same age). It really seemed like the relationship, especially as a new relationship, would've worked better if I weren't sick when we were getting to know each other.
Anyway, the bad experience with this girl made me really gun-shy about dealing with ANYONE who has any tendencies towards drama after that. That's probably part of why I dated the nice-but-dumb guy- at least he was drama-free and I think while I was ill I had zero energy for working on other people's issues. Luckily I'm surrounded by people who are smart and mature so it wasn't really a problem avoiding dating drama queens.
At this point I have to work on being more compassionate and not being able to practice 'drama-avoidance' anymore, since I don't really have Lyme symptoms as an excuse now.
-------------------- Symptom Free!!! Thank you all!!!!
posted
Great advice on the psychological implications of lyme or any chronic disease on one's sex life.
As far as PDE-5 inhibitors (Viagra type drugs), my LLMD has known that I use them and has no problem with them. There's nothing in them that's harmful under normal circumstances.
However, you need to ensure that you tell whatever doctor is prescribing them for you all the other drugs that you are taking. These drugs dilate arterioles, which will temporarily lower your blood pressure. If you are taking any other medication that has this effect as well, or you have seriously low blood pressure normally, your doctor may advise against taking them. Aside from that, they are usually very safe.
Also, don't be afraid to ask any kind of doctor (LLMD, urologist/GYN, ND even) if they have anything that would help to provide greater sexual satisfaction. Embarrassment is the biggest block towards getting help sometimes. These doctors have seen and heard everything, and are there to help you get better, including treating symptoms that affect your sex life Posts: 691 | From East coast, USA | Registered: Jun 2006
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Are you all sayng that people with Lyme actually want to have sex???
LOL, Ive forgotten a long time ago what that feeling was!!
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I posted some info on hormones under another topic. It might be helpful to some people with libido problems.
Here are some other thoughts on sexual issues involved besides hormones:
The urge to pee and bladder discomfort is really a rotten feeling. This has a name "interstitial cystitis," and lots of us have it, becuse Lyme loves the bladder. I use a homeopathic tincture called Cantharis. It reduces the irritation, and has no side effects.
But.. I still get left with the feeling that I can't possibly be attractive to somebody else, when I feel like a troll . Yeah, I know I should just get over it. But then I look in the mirror and see the toll this has all taken. It ain't Hollywood, baby.
I guess I just gotta keep on laughing, even if its only at myself.
BeJoy
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Vanilla
Unregistered
posted
I for one do not even trust drug companies to list all the side effects or to do or report proper drug testing.
One very popular doctor that treats herds of LD patients also has Viagra prominently marketed on his website and brochures about it in his reception area displayed at eye level were you go to pay you bill.
In a medical system based on profit more than health I say it is buyer beware.
I also think there are varying degrees how LD manifests in each person and everyone is different. I doubt all LLMDs would agree Viagra is a good thing for their patients to be using. Just my opinion.
I also think from my experience some pharmacists have better knowledge of certain drugs then some doctors do so it does not hurt to also talk with a good pharmacist as well before taking Viagra.
My friends husband asked his doctor for Viagra and was told he could not have it because he drank too much. There are a lot of factors that go into deciding to take any drug.
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
In terms of sex, I wish I had something to talk about.
Lyme has caused my libido to completely tank.
I keep waiting....and hoping...
I did try viagra, prescribed by obg. It helped, as others said, but the side effects for me included a debilitating headache. Which sort of offset the rest.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Hi Andie and All,
For women, you can buy over the counter DHEA (a hormone normally produced in the body) in health food stores. That will often raise testosterone levels in women, which will increase libido.
They sell DHEA in 10 and 25 mg. If it were me, I'd start by breaking one in half and take 5mg, then increase by 5 a day until you get the desired result. It will give you bad acne if you take too much.
DHEA tends not to work so well in men, but you can ask your doctor to give you testosterone transdermal gel. It works really well for some men.
I don't know if there have been long term studies on taking natural hormone replacements, but I do feel safer taking something that is meant to be in my body rather than something synthetic.
You might want to take a look at the long-winded message I posted in medical under "hormones" for some more ideas. You can also read James R. Wilson's book Adrenal Fatigue for a list of supplements that support healthy hormone production.
I've also tried looking in the mirror and repeating to myself, "I am not a troll!" but it doesn't ever work. It does help to remind myself that I deserve love under any circumstances!
BeJoy
(PS, Andie your in-box is full)
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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I started this thread a while ago and have neglected it. I still haven't figured things out for myself, but I'm so grateful for all of you who chimed in and were so honest. You guys rock!
I have had a few hurdles to overcome when it comes to sex, so I appreciate all of your comments.
One of the things I have found, is that when I've talked with my doc.'s about issues re: sex, they don't have much to offer. They usually focus on the other concerns I have (which is understandable). One doc. put me on tons of L-Arginine. I've also tried the topic lubricants and supplements by Emerita.
So, to change the topic, insomnia is kicking in for me, right now. So, I've been writing a paper that needs completion. It's on: Chronic Illness and wellbeing. Is it possible? I'd like to think so,but how so? I may post under a different subject to ask other "experts", since that's what we are: professionals:) If any of you have anything that you would like to share re: Chronic Illness and wellbeing, I'd love to hear it.
Posts: 60 | From Barrington, RI | Registered: Oct 2003
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
oh well. i uess i'll get in here. my kids would be mad if they knew.
-i'm pretty sure i have read with lyme the libido issue is kinda like the weight issue: 80% gain, 20% lose weight. with sex: 80% have reduced libido---a small percentage become hyper sexed. i have not seen that written here---but i know it from an llmd.
i used to joke that the only two of dr b's symptoms i didn't have was testicular pain (i'm a female) and lowered libido
i can't believe i'm gonna say this here-i may come back and edit it out...but there have been times in my 30 or more year battle with this freakin disease that i have used sex for pain relief...i also use meditation!!! and my old stand by ibuprofen.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Ipkayak - Hooray for you, and please don't edit. We need to hear it.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
vanilla: a 20 year old should not be taking viagra. there is a growing(pardon the pun) trend that young men and even women take 2-10 at a time. this produces a massive orgasism, which the kids like.
viagra is a vasodilator and this is what causes the headaches and warm face and ears.
i find that i take enough viagra just to get an erection. this is usually half a 50 mg pill. too much can cause palpatations. many people take antidepressants, some remove libido completely, effexor, zoloft, prosac, and some less so, wellbutrin,and others.
there is no way around this effect, i had to try 22 antidepressants before i found one that worked. and they have a limited life span of working.
also very important and sometimes scary is the fact that ,sorry for being crude, but this is medical. many men can not ejaculate with antidepressants and some combos of other meds. this is even with the viagra, the viagra in men only causes an erection. in women it increase blood flow to the vagina and clitoris to increase the chance of stimulation and orgasim.
lymies must be very careful on what drugs they consume and have to weigh the need to the risks ,as with all meds.
my wife smokes pot to stimulate her, she does not have lyme.
everyone is different and respond differently to different stimuli
dr.ruth
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
i forgot about the other problem.
you might want to get the book the joy of sex. if your cervix is low , you may need the use a different position, that takes the cervix out of the way.
there are many illustrated positions in this book, and there may be information on this \ problem also.
doc ruth
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
testostrone can definitely work for women. Women with higher levels of testostrone have higher libidos. I know... I have a lot of testostrone for a woman.
I've had the opposite problem with lyme, but I can't say I'm oversexed... Too sick to go out all that much and meet people. I've lost confidence as well. I'll be 47 this year and have gained weight. Drives me absolutely nuts.
And yes, sex can be a very good pain releiver.
Ginseng has a plant hormone simular to human testostrone. It can work- I used to take it before I got lyme- I needed it about as much as a hole in the head... It will increase your confidence too. I used to take cheap korean ginseng candies once a day, the ones in the gold flat boxes. You can find them in larger Asian markets. BUT... ginseng isn't supposed to be taken with an active infection, especially if there is any kind of fever. Testostrone patches would probley be safer.
One concern for women, and possibly men is yeast. If a yeast infection or systemic yeast infection is bad enough it will make you too sensitive and raw and would probley excarborate any other pain you have during sex as well. It will also make a penis hitting your cervix painful even if it isn't tilted.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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posted
I have not had a problem in this department, but it is very difficult when your partner does!
Here are some herbal treatments for low sex drive in women:
1.Agnus Chaste Berry. Hormone balancing herb for PMS, difficult menstrual cycle, menopause. Has been used to diminish sex drive.
2.Antler Velvet. Cardiovascular tonic and natural source of the anti-inflammatory, chondrotin, which is in wide use by arthritics. Considered to be a powerful sex tonic for men and women.
3.Catuaba. Increases sex drive and improves sexual response.
4.Damiana. Increases circulation, sexual desire, strengthens nervous system, and alleviates menopause symptoms.
5.Ginkgo Biloba. Memory. Concentration. Enhanced blood flow to brain and other areas fed by small blood vessels. Impotence, frigidity, healthy sexual function and response, senile dementias, including Alzheimer's.
6.Muirapuama, or marapuama. Diminished sex drive for men and women, especially when psychological factors are involved.
7.Oat Straw, Oat Bran, Oats. High cholesterol, healthy sex drive, tonic to the central nervous system.
8.Panax Ginseng. Reproductive aid, anti cancer, fatigue, balances insulin levels in diabetics, stress relief, energy, endurance, stamina, sex drive. Panax (Asian) ginseng is considered to be balancing to all bodily functions and systems.
9.Rhodiola Rosea. Supports and enhances healthy Libido and sexual thoughts, Erectile function, Orgasms and climaxes, Energy and stamina
10.Sarsaparilla. Blood purification, liver complaints, low sex drive, high blood pressure, circulation, complete digestion of micronutrients in colon.
11.Schizandra. Lung, kidney, liver, skin and "radiance" tonic; low sex drive for men and women.
12.Suma. Immune stimulation, chronic fatigue, PMS, menopausal symptoms, low sex drive for men, and, especially, women. Called "Brazilian ginseng."
13.Wild Yam. PMS and symptoms of menopause, Crohn's disease, inflammation, rheumatism and arthritis, said to slow the aging process. Promotes healthy sex drive and function in men and women.
Hope this list helps you, please do any further reasearch on your own to make your not taking anything that would interfere with anthor drug.
posted
Women usually give me beef jerky, then I'm good to go. My issue is not getting horny, but having energy and not being too sick to go out to even meet someone.
-------------------- Never walk through a cornfield backwards.
Yohimbe is very good for stimulating the blood flow to that area of a man, but if taken in high doses can lead to other dangers. Plus certain foods can cause an adverse reaction.
"The consumption of Yohimbe can result in other far less desirable side-effects. These can include dizziness, nausea, insomnia, anxiety, increased blood pressure and rapid heart beat. Doses in excess of 40mg a day can result in more severe side-effects, including loss of muscle function, vertigo and even hallucinations.
THEREFORE, WE DO NOT RECOMMEND ANY SUPPLEMENT WITH Yohimbe
Yohimbe is also known to react adversely with certain foods containing high levels of Tyramine. Such foods include cheese, red wine and liver. When combined this may cause severely high blood pressure."
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
While I suggested DHEA above, Dr. K notes that it has "disappointed in Lyme." He suggests testosterone transdermal cream for several months until Lyme tx sufficiently progressed. I think this info actually originates from the B protocol.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Yeah, I know I should just get over it. But then I look in the mirror and see the toll this has all taken. It ain't Hollywood, baby. 
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