I'm back-- thanks again for all of you who replied to my last post. Things are still about the same, but, now I have a different discussion question regarding sex.
I'm not usually one to post topics regarding sex on the internet, but , I'm frustrated-- no punt intended.
I have never had sex before I became infected with Lyme, and I've had a lot of problems since. I've talked with multiple doctors-- OBGYN's, GP's, NP, Lyme Specialists, herbalists and healers, and I've never found help. Mostly, I get the same answer that I get for all of my other symptoms-- "Once we find something that works, than this problem may resolve on it's own."
This is a lovely idea, but it's been 9 years, and I'm not getting any better-- I'm still dependent on Prednisone, and other drugs to manage my symptoms enough to keep me from being in bed all the time.
I want to learn to live with Lyme, and I want to live as healthy a life as possible, and in my opinion, sex, is part of a healthy lifestyle.
This has been a source of worry and disappointment for me. While there are several drugs on the market for men, there doesn't seem to be as much research, drugs, and support for women. (What happens when the heterosexual men in the world can get Viagra covered under their ins., and all of their female partners are waiting for science to make a breakthrough?) That thought aside, I'd really love to hear from anyone who is comfortable sharing.
I'm at a point where I have mixed feelings regarding sex- while I am curious, and feel that's it's a healthy and valuable part of life, I also shy away from it, because it can be uncomfortable, painful, unrewarding and embarrassing.
Thank you in advance to all the brave souls who are willing to post.
Sincerely,
Kado
Posts: 60 | From Barrington, RI | Registered: Oct 2003
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Can you be a little more clear on what your questions and concerns are? Are you married, in a relationship?
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Kado-
I'm not sure what your question is.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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Red flashing lights went off when you stated " I'm still dependent on Prednisone, and other drugs to manage my symptoms enough to keep me from being in bed all the time."
May I ask what you're taking Prednisone for. I'm sure your LLMD is aware, correct?
My experience w/ that drug started my downward spiral.
-------------------- Stella Marie Posts: 694 | From US | Registered: Apr 2005
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* I have low libido * Difficulty getting aroused * Difficulty achieving orgasm, and when I do, it's not very fulfilling-- it's as though my body can't quite finish-- I can have a orgasm sometimes- and I become aroused and orgasm quickly and I have little control over prolonging the experience. It feels like my body tires or stops short of achieving orgasm so instead of having a 'crescendo' that leads to an 'explosion' there's some build up and a bit of a weak orgasm and then the sensation tapers quickly. * I often have pain (dull pain as if being punched in the stomach) during intercourse and can only have intercourse if I'm on top and leaning forward. * On occasion I become nauseated during sex- nothing says romance like "honey, I have to stop so I don't vomit on you:)"
I've talked with my doctors about this and none of them have been able to help.
I've tried supplements, vibrators, creams, serums, lotions, and potions. I've experimented with watching pornography (Dr. Bansfield wrote an article on how Lyme can affect our sexuality and change our sexual interests, tastes, etc.)
I've tried various medications- I was on Wellbutrin, now on Cymbalta.
I am on Prednisone-- yes, my LLMD prescribes it-- he's been trying to help me to get off of it for years, but we can find anything that will control the arthritis pain enough for me to get off-- it's an awful crux.
I am currently not in a relationship, but I would like to be in a healthy sexual relationship at some point. I used to think that I would just wait to find a treatment and then I may feel up to being in a sexual relationship, but I've been sick since I was a teenager, and I'm 28, and this is the time in many people's lives to be dating and considering a sexual relationship/marriage.
I feel frustrated that I've been sick for so long and haven't been able to overcome this-- I don't feel "human" in this regard. Lyme has impaired my abilities with regard to college, work, making/keeping friends, exercise etc., and this is another area in my life that is a source of frustration.
I'm embarrassed and I feel like I'm missing out on a very important and healthy part of life, and I'm disappointed that despite all of my efforts my doctors haven't been able to help me and I haven't been able to help myself.
Posts: 60 | From Barrington, RI | Registered: Oct 2003
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posted
Most of the SSRI's do impair sexual function. Maybe you could try one of the tricyclic anti deps.
Posts: 96239 | From Texas | Registered: Feb 2001
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Thanks for your idea about the anti-depressants. Would you mind sharing if you have had any experience with SSRI's and or tricyclics?
Cymbalta is an SNRIs (serotonin and norepinephrine reuptake inhibitors), and what what I've read, it has few sexual side effects, but you never know.
If there is anyone who has made a connection between sexual dysfunction and any of the following drugs, I am curious to hear your experience.
Prednisone Cymbalta Levthyroxine Cytomel Cedax
Thanks
Posts: 60 | From Barrington, RI | Registered: Oct 2003
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I have been taking Cymbalta for years, 90 mg a day, and find it does not interfere in any way with my libido. Being sick and feeling like crap, however, does!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
viagra,levitra, or cialis each works differently but does help considerably. would suggest cialis as it lasts many hours, and you can have sex when you feel comfortable.
viagra works fast and makes me uncomfortable. the libido factor may not come back for a while but you should achieve orgasm with cilalis but maybe not an ejaculation. the ejaculation may be hindered by the ssri's
but at least you can get joy in the fact that you can satisfy your partner.
docdave
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Prednisone not only makes tick diseases worse, but it will also mess with your hormones.
Before being diagnosed with lyme, a doc gave me high doses of prednisone and my libo crashed along with everything else. It took my endo years to get everything under control, but since then everything is fine.
Posts: 1603 | From ny | Registered: Aug 2006
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posted
hmmm...I was wondering about prednisone. Not good.
kado..Read this, posted by luvs2ride yesterday:
"steroids only mask symptoms. They do nothing to get to the source of your illness. Sure shutting down your immune response system stops the pain temporarily but does it make sense?
Also, it only works until the source of your illness grows large enough to overcome the effects of the steroids. Now you have a massive problem that is nearly impossible to correct.
Find another way to feel better such as detox to help clear the body of the toxins that your immune system is reacting to. Kill as many bugs as possible to lower the overload to your immune system.
Eat as nutritiously as possible. If you are suffering inflammation, then go vegan for a period of time. That is the least inflammatory diet and it will give your immune system the fuel it needs to fight while you are starving the bad guys so they can't fight." ++++++++
Good to know about Cymbalta!
I have never taken SSRI's. I have always taken tricyclics....mostly for sleep.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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I don't know how severe your arthritis symptoms have been, or even if this is a symptom for you at all, a LLMD who has prescribed this for me, b/c we haven't been able to manage my arthritis with Embrel, Humira (TNF's), Methotrexate, Minocycline, Cox 2 inhib.s, analgesics, narcotics (Hydrocodone, Oxycodone, Acetamenaphin with Codeine). I've tried the over the counter pills, P.T., acupuncture, manual therapy (a wide variety), EFT, The Cowden Protocol, IV abx, oral abx, low dose Naltrexone (I'm still on oral abx), and the list goes on. I'm not vegan now, but I have been and felt that it hasn't made a difference. I've also followed the food allergy recommendations, but found no relief-- I only found that I became hungry and struggled with having to follow diets. I felt like food is one thing that I can sometimes enjoy and staying on a rigorous diet took even more enjoyment out of my life. Maybe I'm just a wimp or a complainer, but it's hard to stick to protocols that lack positive feedback. I try to eat a balanced diet, low in sugar (but not sugar free), very low in preservatives, mostly organic (as much as I can without stressing). I limit dairy, and try to eat some animal products-- I used to be vegetarian and vegan, but my doctors felt that i would do better with some meat. I try to eat berries and leafy greens for inflammation and keep simple sugars and complex. carbs to a min. to avoid candida.
thanks again for your response. I hope that I don't come across as ungrateful for your advice, I'm just frustrated that I having such a down few weeks and that my docs and I can't get me mobile when I'm off the Prednisone. Given the choice, I'd rather be able to be on the Pred. and be able to care for myself than be off the Pred. and have a libido (which I couldn't use b/c the arthritis would be too bad:(
Thanks again,
Kado
Posts: 60 | From Barrington, RI | Registered: Oct 2003
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Hi Kado,
I wonder if perhaps you have something going on with the muscles in your pelvis. When you said you had pain with intercourse , Pelvic floor dysfunction came too mind. Here are some of the symptoms. You dont have to have all of them.
Have you tried going to a Pelvic pain center if there is one in your area? If not often Urogynacologists can help with this.
The symptoms of PFD may vary greatly depending upon what part of the muscle complex is affected. These may include:
Difficulty initiating the urine stream
Straining with urination
Pain with urination
Starting and stopping of the urine stream
Sensation of incomplete bladder emptying or the sensation of needing to urinate almost
immediately after urinating
Pelvic pressure or pain
Frequent daytime voiding
Constipation
Pain with orgasm
Pain with vaginal penetration (superficial and/or deep) Increased discomfort when sitting for long intervals
I don't have very many of the symptoms, however, I do see an LLMD in the same town, so perhaps I could combine doctors visits on my trip.
Thank you.
Also, if anyone else has any suggestions on getting of Prednisone-- I'm all ears (though, I wonder if I've tried everything:)
Kado Posts: 60 | From Barrington, RI | Registered: Oct 2003
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Kado-
There may be a lot in your life that you want to be different and that you feel you have little control over.
But, wow, expressing yourself, at least i writing, is not one of your problems, lady.
Despite it all, you seem remarkably grounded and insightful; you are obviously capable of seeing and analyzing yourself and your life in a straight-forward, non-self pitying way,and of seeing clearly what you would like to be different.
Those are hugely helpful skills to bring to a "normal" life, and more crucial yet since you are being forced to deal with this dehabilitating,chronic disease, and at such a young age.
I hope you find the answers you are looking for, and soon, and beyond that, that you achieve the whole and healthy life you are seeking.
I have a feeling your inner strength will take you a long long way down that road.
hugs, dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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There may be a lot in your life that you want to be different and that you feel you have little control over.
But, wow, expressing yourself, at least i writing, is not one of your problems, lady.
Despite it all, you seem remarkably grounded and insightful; you are obviously capable of seeing and analyzing yourself and your life in a straight-forward, non-self pitying way,and of seeing clearly what you would like to be different.
Those are hugely helpful skills to bring to a "normal" life, and more crucial yet since you are being forced to deal with this dehabilitating,chronic disease, and at such a young age.
I hope you find the answers you are looking for, and soon, and beyond that, that you achieve the whole and healthy life you are seeking.
I have a feeling your inner strength will take you a long long way down that road.
hugs, dilly
Thanks, that's so sweet of you to say, I very much appreciate your support.
kado
Posts: 60 | From Barrington, RI | Registered: Oct 2003
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posted
I am no expert on the Lyme situation, but my husband was on long term prednisone for hives (non-Lyme related)... IMO, its BAD stuff. And just like you, when he would try to wean off of it, his problem would get worse.
But, it changed his personality SO drastically that I gave him an ultimatium.. get off the prednisone in 30 days or get out of the house. At that time, I had a 2 yr old and a brand new baby to worry about, and he was unbearable to live with.
He finally got off the prednisone, because of my insistance, and it wasn't easy but he went back to being his normal self.
So every time I hear someone talk about prednisone, I cringe. I am sure it has its purposes, but as a long term solution, its a scary thing to mess with.
Also, like others have mentioned, I thought Prednisone was bad bad bad for Lymies.
Posts: 19 | From Chicago | Registered: Mar 2008
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I understand that you and your husband had difficulty with the side effects of his Prednisone, but did you help him to find another effective alternative b/f you gave him an ultimatum?
I feel terrible on it and I feel a lot of pressure from myself to find an effective alternative, but I haven't been able to find one in 9 years,
I live with my parents and I feel fortunate that they have not asked me to leave.
To answer your question-- Lyme is not generally recommended for pt.s w/ Lyme, however, for a pt. like me, who hasn't gained improvement from any other tx., it's necessary to use Pred. to control arthritis symptoms for the time being.
I hope that things are okay with you and your family,
kado
Posts: 60 | From Barrington, RI | Registered: Oct 2003
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