Does anyone have sexual problems from their lymes? I know it is not the most popular topic to talk about(how embarrasing), but if so, does anything help to clear them up. Because of the nerve involvment of my case, I am having functional problems as well as desire issues. I have been on IV Rocephin 4g 3x week for about 5 months so far and have made great progress towards getting better. This is my only real complaint at the moment.(I guess I should feel lucky) The problem seems to come and go like the rest of the symptoms did. I can tell if I'm going to have a problem just by how I am feeling at that moment.(can't explain this)It's almost like an emotional numbness. Sometimes I have feelings and sometimes I don't. Does this sound familiar to anyone else?
Posted by Tincup (Member # 5829) on :
What is sex?
Ok..
NOT my topic.. but I will at least "break the ice" before going to fix supper.
Anyone?
------------------ If you get the choice to sit it out or dance...
Posted by caat (Member # 2321) on :
yep. sometimes I have feelings sometimes I don't. about anything... It's scarey. It's starting to get better though.
Posted by Limping Lily (Member # 5099) on :
What I hate are the sudden, too fleeting urges, or the preoccupation with said subject at inappropriate times. Otherwise,it's nonexistent. I miss it; it would have made things bearable the past few years.
------------------ ~*~ Carole ~*~ Grandmother of 4
Posted by troutscout (Member # 3121) on :
tRY sAMENTO ...IT IS A cENTRAL nERVOUS SYTEM STIMULANT (AS WELL AS ANTIBIOTIC)
I had the best sex while on Samento...oh, and so did my wife.
How the urges are with you all the time...in fact I found myself looking at the local sheep at times...ha, ha.
Trout
Posted by Lisianthus (Member # 6631) on :
LOL Trout!!!! Posted by lymiecanuck on :
I walked around for a year thinking about it all day every day.
And I have had the times when there is nothing.
I think the nerves get all messed up and it comes and goes like all symptoms.
Lymiecanuck
Posted by Gabrielle (Member # 5329) on :
SEKS ? How do you spell it?
What would I give for urges...
Gabrielle
Posted by tabbytamer (Member # 3159) on :
C,
Do you have a copy of Dr. Burrascano's Treatment Guidelines?
"Sexual dysfunction/loss of libido" is number 11 on his list of 38 typical symptoms. As Lyme and any co-infections are treated, this and other symptoms should reside.
Posted by Paisley (Member # 6502) on :
dear c very personal for me discuss, but best way for me to describe it is that all wires to that post went dead.
reagards paisley
Posted by lymelady (Member # 6207) on :
Yep, I'm with Tincup, what is sex!!!
When you feel like crap most of the time, all of the time, sex is the furtherest thing from your brain.
But then, these medications make you have really strange dreams, at least I do.
I have had really gory dreams about murder (in one I murdered my sister in law, whom I adore) and once I dreamed I slept with Jimmy Carter!!!!
Now I am an old broad but really, Jimmy Carter!!!
Lyme brains are not normal, let's face it. Lymelady
Posted by C (Member # 6203) on :
Thanks to all who replied.
Troutscout: I have been on 3,375mg of Samento a day for about a month now(worked my way up from one a day starting in Sep.) and have had great improvment in all my other symptoms.
I have never had these fleeting urges that you all speak about. I wish!!! I am the complete opposite. No urges at all. Ever.
tabbytamer: Thank you very much for the link to the treatment guidelines. There are some supplements there that I should definitely(sp?) be taking.
lymelady: I have these murder dreams alot. I never said anything to anyone about them until now, because let's face it, it's not something that you want to tell people.
I guess I just have to ride this out like every thing else. Hopefully things in this department improve.
Posted by lymelady (Member # 6207) on :
Whew I am relieved to hear I am not the only one. So far I have had two murder dreams, one being my sister in law and the other a best friend for years and years.
You wake up so horrified and almost in a cold sweat. Maybe it is a transference deal, the people you murder are really lyme spiroketes.
Lyme never gives you a break, even in your sleep. Sweet dreams! Lymelady
Posted by Andie333 (Member # 7370) on :
UP
Would like some good news here...
[ 10. February 2006, 06:46 PM: Message edited by: Andie333 ]
Posted by JimBoB (Member # 8454) on :
ANDIE "I" will give you your GOOD news.
I will only give you some vague things on it though as I plan to write a book on it. Hopefully, been planning it for years.
First off: "C" You do NOT state IF you are a man or a woman!?!?!?!
Next, I had ED long before I got Lyme disease. I got a pretty good handle on it with Yohimbine and a few different appliances I "invented", that work quite good and are fairly comfortable to wear.
The current drugs like V*****, L******, or C*****, did not work good at all for me. Mostly just gave me lots of side effects. Of the three, L****** worked the best for me, but still did NOT work very good at all, AND they are all very expensive.
I have also been experimenting with different herbs in the past couple of months, and while some have SOME merit, they are not doing a very good job, overall.
I got the ED about 12 years ago when I had my colon removed. Having the sphinctre muscle partially destroyed did it. However, I don't give up easily and searched out anything I could find to help. AND when most of what is out there didn't do much good, started experimenting on my own.
Also, the Lyme has made things more difficult at times, along with AGE, but still staying on top of it as best I can.
Hope this helps you at least some.
Jim Posted by I Have Lyme Etc (Member # 7439) on :
My husband and I were just discussing this the other night.. The last month or so I have absolutely no interest or desire in sex at all. Mentally or physically and it's been this way for almost 3 years now.. Once in a while I will have an urge here and there but for the most part its almost always non exsistant..
Posted by Andie333 (Member # 7370) on :
Thanks for the replies.
I grabbed this tread from the search results, because I have seen very little progress here.
Jim, first, thanks for your candor. I really appreciate it. I went from having a very active libido to virtually nothing.
Like you described, Lyme etc., I do have moments and times, but they're very very rare and have been for several years -- after I was infected but before my Lyme was diagnosed.
I've been in my relationship for 15 years. I know part of my hestitancy has to do with not wanting to get anyone else sick.
I also know being tired factors in.
I don't have a lot of energy, and what little I have goes to working and doing whatever things need to be done around here, like walking the dog, picking up the mail, etc. Just the thought of expending more energy exhausts me.
I know lack of libido is a primary symptom of Lyme, but I also wonder whether it's typical in other longterm illnesses.
This is definitely an area where I/ we could use some good news. I'm hoping someone will chime in with some wonderful cure or story of personal progress.
This is also an area where I think about all the young people on the board and hope, for their sakes, this is something that changes as we get better.
The whole thing makes me so sad!
Andie
[ 11. February 2006, 04:36 PM: Message edited by: Andie333 ]
Posted by C (Member # 6203) on :
Hello all. This is "C" and for the curious, I am a man. Unfortunatley not much has changed in this dept. since I made that post over a year ago....depressing, I know, but I still have hope. I am 28yrs old and the lymes has been the culprit (although I didn't know it at the time) of my sexual problems since I was about 23. I can't help but get depressed thinking that I am wasting the best years of my life trying to eridicate this @#$%& disease. I guess it is what it is. I don't get as bent out of shape as I used to, and I keep trying to better my situation. The problem lies in the brian. I can take all kinds of ED drugs and they don't do anything because I have no physical problems. It's the wiring that's screwed up. Good luck to you all. We're going to need it.
Posted by David95928 (Member # 3521) on :
C,
Has your testosterone level been checked? Most guys need a level of 400-600 to have much desire or function. Unfortunately, the lab results often state that anything above about 250 is "normal." I confronted a doc who gave me that BS and pointed out that such a range must represent a bell shaped curve (normal statistical distribution) and that 250 might be normal for 5% of men. What about the other 95%? For them 250 is decidedly not normal. He couldn't argue.
Anyway, a number of Lyme guys have reported low testosterone. A low level has additional implications in terms of maintaining bone density, being able to carry out analytical, mental tasks, maintaining muscle mass, strength, and endurance. And some research is suggesting that too low a level of testosterone can actualy be a factor in the development of prostate cancer.
If you have a level lower than 400, you are a candidate for replacement. There are several routes by which this can be done. There is a topical gel, pills, and shots. Another approach is using hCG shots to stimulate the pituitary to send a message to the testes to make more testosterone. This method, if it works, produces the most natural result, because you are making your own rather than ingesting a synthetic.
If you haven't looked into this, you probably should because it would almost certainly help and you are to young to be dealing with this.
David
Posted by C (Member # 6203) on :
David,
Yes, my testosterone levels have been checked and they were normal. Just to do an experiment I had her prescribe me a testosterone gel that I applied to my shoulders and arms everyday. Wow. Talk about superman. My bench press...actually all of my weight lifting shot through the roof and I put on about 20lbs of mass. I looked great, but I didn't "feel" any difference as far as the sex dept. is concerned. That is how I know it is a "wiring" issue. I went off of the juice after re-testing my T levels and they were in the 900's. The only thing that is going to make my drive and function come back is the elimination of the infection in that particular area. I am working on this now.
Posted by David95928 (Member # 3521) on :
Sorry, I wish it was something as simple as supplementation. Do you have a specific plan for getting rid of the infection in that area? Just curious.
Posted by Lymetoo (Member # 743) on :
I'm a woman, [surprise, surprise!] and found great improvement in this area from my hormones being balanced. I take estrogen, estriol, testosterone, and a few other goodies like that.
I suspect the testosterone has helped alot. Since my complete hysterectomy many years ago, my body hasn't been producing ANY hormones in that category.
I've also been helped greatly by taking mangosteen juice. I know men it has helped also. Awesome stuff!!
Anyway, the libido is back! Posted by Andie333 (Member # 7370) on :
Too,
That is such great news; I'm really glad to hear this is an area that's shifted for you.
I'm already on hormone supplementation, so that didn't do anything.
Maybe it's time to try that juice. What's it called?
Thanks for the info and for the hope!
Andie
Posted by JimBoB (Member # 8454) on :
WOW, in your twenties and not doing it?
I was at 10 to 12 times a week in my late teens, 5 to 6 times a week in my twenties through my forties.
Down to 4 or 5 times a week after the colonoscopy for several years, but the past year I am down to only 2 or 3 times a week. AND I have to FORCE myself to do that.
ALSO, I rarely do it at NIGHT. Have to have at least 4 hours sleep so take my pill in the morning when I wake up and try to do it within 45 minutes. Some days works better than others.
No magic formula out there and probably won't be.
You can't do it IF you are very tired at all. My wife doesn't appreciate the mornings too much, but it is that or almost nothing. Once in a great while, maybe two or three times a year, I can manage at night.
It works best, usually, IF we do it every other day or every third day. Wait four days and might not work at all, and five days is a disaster.
I guess that old adage that: "If you don't use it, you lose it"; applies here.
A constricting appliance is almost always necessary. Not "natural" you might say, BUT necessary most of the time.
More necessary now as getting older and as the Lyme got worse last year.
Hope you that only the Lyme did it, can get better soon.
Jim Posted by MizMo (Member # 8389) on :
I've definitely had a drop off myself. When I'm tired and achy, even if I'm interested, I just don't feel up to it.
Takes a lot more to get me going when I am up to it, too!
I thought at first when all this started, that it was my hormones that were haywire. I spent a couple of years on various medications that had no affect on my symptoms whatsover.
It's a relief to know what's wrong, but that doesn't help my sex drive much.
Hubby whimpers sometimes but he's such a loving , big hearted guy and does understand that the Lyme knocks me down. He said "If it wasn't so good, I wouldn't miss it so much". Hehe.
~~Mo
Posted by JimBoB (Member # 8454) on :
Like I said up above I have to "force" myself quite a bit. Many times I don't "Feel Like It", but do it anyway, and know that MOST of the time it will still be enjoyable for us, once we get going.
Course WE are older, so it is understandable too.
I LIKE your website, Mo. I keep thinking about doing one, but never do. I do Fine Art Photography, and could probably sell some of my work online IF I got one going.
Jim Posted by char (Member # 8315) on :
I have been reading here that cognitive problems are the last to go. Wonder if the sexual problems similarly get better toward end of treatment?
C- Sorry for your trouble. It might be hard to believe, but some people peak in their 30's or even 40's so its not over...
Char
Posted by JimBoB (Member # 8454) on :
C
Guess I NEED to read things closer. Just realized that this was FIRST POSTED way back in 2004.
Now on reading the posts again, I am wondering WHY you put the testosterone Gel on your ARMS and SHOULDERS? WHY not put it on your Genitals where the trouble SEEMS to be originating? OR IF the problem is not down LOW, try it on your head?
Just a thought!
Jim
Jim Posted by JimBoB (Member # 8454) on :
Char: It is women that peak in their 30's and 40's.
Men uaually peak at about age 18 and it is all down hill from there.
Hopefully, and for most of us, thankfully, it is a much slower downhill run than it has been for C.
Hope he can get a "handle" on it.
Jim Posted by C (Member # 6203) on :
JimBob,
Your arms and shoulders are where you are supposed to put the testosteron supplements. You should NEVER, I repeat, NEVER put any type of testosterone boosting drugs on your genitals.
Posted by just don (Member # 1129) on :
I always thought this problem was just a fact of 'age'. Ever since I turned 155 things are just not the 'same'.
You said if you dont use it you lose it. WELL,,, since I have been alone since 2-99, and nobody seen on the horizon. After that long out of commission, I feel I am safe as Fort Knox at a bank robber's convention. My role is delegated to 'looking' but not touching.
Can one get testoserone(sp) over the counter without RX? Chiro always told me it would make me feel better. Just trying to feel alive and not 95% dead!!!
Never tried the miracle pills cause of NO use to me. At "MY" age, why try those??? Mostly because I am --just don-- with a sore noggin!!!
Posted by Andie333 (Member # 7370) on :
Ever since I turned 155
Don,
Seeing that particular typo made me laugh.
quote: At "MY" age, why try those???
At your age, anything's amazing!
Andie
Posted by JimBoB (Member # 8454) on :
YAH, JUST DON, IF I was YOUR age, I would PROBABLY give up TOO!!!
BUT as it is, at 64 I am HOPING that I have a few years left to be ME!
Didn't get remarried 5 years ago, to "just look", if you know what I mean. Thought that MAY be the case with this Lyme, but hanging in there and not getting any worse, at least, right now.
Jim Posted by JimBoB (Member # 8454) on :
Okay, "C". I am really not very familiar with the testosterone drugs. I thought you were supposed to swallow them. Didn't even know you were supposed to "rub" them on.
I think I have read in the past that they weren't real good for you. Are they a steroid? I don't have a clue about them really.
Jim
Posted by just don (Member # 1129) on :
Who the heck are you to accuse me of not being able to type properly. THAT was NO typo you bozo's!!! Everybody says you are as old as you feel!!!
Geesh next they are going to accuse me of not being able to go quail hunting without shooting my freinds.
Then they going to charge me with hunting without proper quail license and a lawyer stamp(sorta like a waterfowl stamp) only different!!!
Or make me resign cuz I had a acci-dent. Well all those do gooders, check der trousers for accidents too!!! Pweez????
Posted by MizMo (Member # 8389) on :
Thanks Jim,
You should set that website up! I come across websites like that often..It's a good way to present and sell your photography.
~~Mo
Posted by JimBoB (Member # 8454) on :
MizMo:
How much does it cost?
Jim
Posted by C (Member # 6203) on :
Hate to be a party pooper but this thread has become slightly off topic......Please stick to the topic listed. Thank you.
C
Posted by JimBoB (Member # 8454) on :
You are right, C. We are Pm'ing each other now.
WHAT else do YOU want to know to get going again?
Jim. Posted by just don (Member # 1129) on :
Sorry Mr "C." Open mouth insert my size 13's into thereof.
I was just funnin with yall if you couldnt tell!!!
My sincere apologies, wont happen again 'today'. otherwise I claim lyme brain. Or garbage in, garbage out, comes to mind. But remember, i am --just don--
Posted by Truthfinder (Member # 8512) on :
Well, C, since you brought it up....
I am female, recently tested positive for Lyme, had it at least 20 years...
Slowly delcining drive through those years of being diagnosed with all the wrong things - FMS, CFS, CMPS, etc., and have virtually no desire now at all. I am on bio-identical HRT including some testosterone with no change in libido.
BUT THE WORST is that all of my...um... fun parts... have become so sensitive that I do not feel pleasure - I actually feel pain. I now have to take 25 mg. of Demerol just to tolerate being touched and be able to enjoy any sex life at all. Talk about your wiring being fouled up......
Does anyone else have this hyper-sensitivity = pain problem, either men or women?
T Posted by C (Member # 6203) on :
T,
Down stairs is completley numb to the touch. So I guess I am the complete opposite of you. Either way there is no drive or desire. If it does manage to perk up, there is no feeling.
C.
Posted by JimBoB (Member # 8454) on :
C and T:
I am not numb to the touch, but very diminished feelings these days.
IF it weren't for Yohimbine that gives me a little bit of GOOD feeling after about 40 to 45 minutes, I would be in trouble big time, too. Also an appliance I designed to "perk" him up and keep him there, especially, does wonders, IF not worn TOO long.
Like I said earlier, I have taken some herbal remedies, several, but don't get much help from them. A little but at the wrong times of day.
It is getting worse with age, but still having some success. I imagine in a year or two or three I will have to just "give it up" too.
Jim
Posted by Moose (Member # 8545) on :
From my point of view, those who are single or not in any relationships, who prefers celibacy over a highly rated entertaining life, is better off than those who are married or in relationships.
My libido has lasted about 10 years, more or less; of late it sometimes even goes into a form of animosity for this type of intimacy/entertainment, however ways you chose to look at it.
As years went by, without a clue of having lyme disease until recently, I find it very difficult to find the desire to talk about or even get into the act without feeling some remorse, especially at every urge that may arise from my husband, which is just as frequent as an adolescent puppy, even at his age of 50. Eegads!
What makes it all the worse, is that from time to time, I may consent for my husband's sake, but the agony that comes afterwards is no picnic. Nowadays, I am lucky if I can walk normal for a few days after each episode.
Ahh, the pain gets too unbearable, that I can't help but snarl my fangs at my husband's every urge or sexual touch, even my body seems more sensitive and repels at such considerations, which would not surprise me if I were to find that it's a part of my psychological reaction in relation to the undesired consequences afterwards.
As miserable as I feel with all my joint pains and so forth, I have no desire to exacerbate these conditions. Thus in my world, it's taboo, until I can get my normal body back and move on with my life again.
Posted by klutzo (Member # 5701) on :
Up until the morning when I woke up with both arms and both legs numb and hair fallen out all over my pillow, which is how my illness started, I was legendary among my friends as a real horndog.
After that morning, all desire was gone, zip, zero, zilch, and the only time it came back was when I went to a super duck, who injected me with 400 units of Depo Medrol. I was too dumb to know how bad that is for Lyme back then, since I thought I had fibromyalgia at the time, one of two misdx's I got before finally finding out it was Lyme.
After the injection, all symptoms of illness disappeared for 3 weeks and my sex drive came back. Depo Medrol supresses immunity, and 400 mgs. IM all at once just about kills immunity.
So, I concluded that the overactivation of the TH2 immune system is a big part of the cause of libido supression in Lyme. Since Samento modulates immunity, that may be why Trout got results with it.....
Trout - I have taken Samento for two years now and it has not helped my sex drive at all. Lucky you! See above for why it may have helped you with this problem...just my two cents.
LymeLady - Please do not feel bad about Jimmy Carter. I once dreamed of doing it with William F. Buckley, Jr.!!! I woke up right after the dream and almost puked.
Truthfinder - you may have vulvar vestibulitis if you are female. I have it and after 2 years of anti-yeast treatment, it is finally under control with once weekly boric acid suppositories. It hurts like hell!
Moose- animosity to sex can be caused by low levels of human growth hormone. I have this feeling sometimes. Have you had your IGF-1 level checked?
Klutzo
[ 18. February 2006, 02:18 PM: Message edited by: klutzo ]
Posted by Andie333 (Member # 7370) on :
Klutzo,
I was really interested in what you said, because like you, I went from having a very very active libido and sex life one day to
having all sexual feelings shut down the very next day.
It was like someone switched off a light. To me, this is one of the harshest symptoms I have.
Andie
Posted by JimBoB (Member # 8454) on :
Every person on this earth is different to some degree, yet we are all alike, too.
I too was like a puppy into my 50's and probably still would be if it wasn't for the complete removal of my colon almost 12 years ago. AND this danged Lyme.
BUT I REFUSE to give up. NOT as long as I am able to work up any desire at all. NOTICE I said "work up" It is not naturally there any more like it used to be. But, like I told my wife the other morning, when she said, Okay, but it is just another "household chore". I said: "What do you mean it is just a household chore? THAT is what I live for these days!"
Well, she reminded me, that I live for more than that; like NASCAR Races, Food, American Idol, Photography Competition, FOOD, Good Movies, FOOD, Old Cars, did I say Food? THEN she says: "But this SURE WAS a FUN household chore".
Point is, SHE claims she doesn't have Lyme, but I see SOME symptoms in her, including a much reduced libido the past few months also. SHE is not USUALLY in the mood, but MOST of the time, I can get her in it with some effort.
Don't know WHAT to say about the PAIN some of you suffer. Delicate touch, LOTS of good lubricant, and holding and kissing COULD help, at least some. IF NOT, I think I would see a doctor about it.
Take care, may there be happier days ahead. Jim Posted by Truthfinder (Member # 8512) on :
Moose, I also have ``post-coital'' body and back pain these days, plus the ``animosity'' thing going on when touched. In my case, the anger generated makes some sense because of the intense pain created in my most sensitive parts. It is like making love with a belt sander. That would irritate anybody. And I should point out that my partner is MOST considerate of my defects, so he is not the problem. We have figured out a few methods of coping with this as best we can.
Thanks Klutzo for the tips about vulvar vestibulitis, and also the advice to Moose about the HGH thing. I have never had my levels checked either. Don't know if I could afford treatment if the levels are low, but might be worth checking out.
To those of you with loss of feeling and sensitivity, well, that would not be fun, either, I admit.
Tracy
Posted by bettyg (Member # 6147) on :
David, I'm breaking up your LONG continuous post to shorter ones of 6-8 lines of text and please DOUBLE space in between. Please edit your original post breaking it up...thanks so much! WELCOME to the board; I don't remember seeing your name before!
We chronic lymies can NOT read/comprehend long posts and also those that go super wide from LONG web site addresses; which yours isn't but wanted to comment on this now for others reading this.
Klutzo, could you edit yours too and DOUBLE space between your paragraphs. Later on you do it, but not at the top.
I'm hear to learn as much as possible too, and to read about tests or other names for this problem.
Thanks for understanding 1 of the many neuro lymies on this board.
quote:Originally posted by C: David, Yes, my testosterone levels have been checked and they were normal. Just to do an experiment I had her prescribe me a testosterone gel that I applied to my shoulders and arms everyday.
Wow. Talk about superman. My bench press...actually all of my weight lifting shot through the roof and I put on about 20lbs of mass. I looked great, but I didn't "feel" any difference as far as the sex dept. is concerned.
That is how I know it is a "wiring" issue. I went off of the juice after re-testing my T levels and they were in the 900's.
The only thing that is going to make my drive and function come back is the elimination of the infection in that particular area. I am working on this now.
Ladies, thanks for joining this delicate subject, and I'm glad to read other women have the PAIN too! I thought it was my many large fibroids but after hysterectomy; NOPE, they didn't cause me such severe pain!
Also, thought it was another "unmentioned" pressure point from our fibromyalgia!
Even my female gynecologist can't examine me since I hurt like hell. "patient comprimised exam". Compromise my foot. Haven't had another gyn since then! I keep on top of all my other tests, etc...but no pelvic exams!
Prior had a healthy libido. At moment can not even remember how many years its been for me.
We miss those special times; what a great stress releaser as well. We just find other ways to compensate. It's still on my GET WELL WISH LIST of things to do again!
C, hope you find help thru other men's comments. Thanks for addressing this.
Just Don....what a wonderful sense of humor you have.
Posted by DolphinLady (Member # 6275) on :
This is what has made a positive difference for me: Balancing hormones Balancing brain chemistry Reducing germ load (lyme & babs in my case) especially in the central nervous system Exercise that helps with circulation in general and also specific to the area. Massage Lots of rest and recovery time afterwards All the healthy lifestyle stuff as much as possible
These are just some initial thoughts for a very difficult problem.
Posted by vitch (Member # 8094) on :
Has anyone found that very aggressive antibiotics help?
Has anyone found that being on IV helps to resolve these problems?
Posted by C (Member # 6203) on :
Aggressive abx do not help. I was on IV Rochepin 4grams every other day for 10 months. along with 800ml of Ketek and Zithromax. This was quite aggressive and I almost lost my galbladder because of it.
Posted by Andie333 (Member # 7370) on :
I've lost my gall bladder AND my libido
Andie
Posted by chroniccosmic (Member # 7789) on :
Hello all,
Went through this too about a year or so ago. Did a saliva test for hormones and am doing bio-identical hormones, progesterone, DHEA, and testosterone.
My doctor told me to apply it to the genitals (I'm female) and the pharmacist instructed me to do the same.
C---Why did you post that it was to never be applied there? Yikes! Posted by JimBoB (Member # 8454) on :
Chronic:
Thanks for the post. I guess maybe I should look into that.
Hopefully C will answer your post soon.
Also, VITCH: IMO the abx actually make the situation worse if anything. They are killing all the good stuff in our bodies. I feel terrible right now as I write this. I NEVER felt like this while I was on herbs only.
I am supposed to finish my doxy on Friday night, but I may stop it right now. Been really tough tonight.
Hope to wake up in the morning.
Seriously!
Jim Posted by C (Member # 6203) on :
The stuff that I was prescribed (Androgel) was not to be put on your genitals. It was a topical gel that was to be applied to your arms and shoulders and the testosterone would be absorbed through your skin. This type of therapy would damage mens testicles by shutting them down completley. I'm not saying that there aren't therapies out there that require you to do this. I'm just sharing my experience with the chemicals that I have used.
Posted by Lymied (Member # 6704) on :
As I get better I feel awakened in this area Thank God! Makes me wonder how long I was dealing with these bugs.
My biggest issue is feeling sad that I have to worry about passing stuff back and forth between my husband and myself, since he is sick too.
As well, I worry about getting pregnant. I will not take BC Pills...took them for two years way back when and I am very leary of them. So we use other methods of BC - but it all seems so contrived at times.
It is just too bad that lyme and tbi's even rob us of some spontaneity in bed. That is one of the biggest reasons I hate these diseases so much - there is nothing in my husband's and my life that the tbi's have not affected. Those on the outside don't understand the breadth of it.
Posted by chroniccosmic (Member # 7789) on :
C--
So it seems to be okay for women to apply in that area but not for men. That's what I'm getting out of this conversation.
Anyway, its awesome and has helped the libido tremendously. Have to be careful and not party with it too much or I feel like getting into a bar fight!
Posted by DolphinLady (Member # 6275) on :
I should emphasize just to be clear, not argumentative, that nothing helped me until I was well into abx treatment (2.5 years). My progress was two steps forward one step back but steady and constant.
It wasn't easy; I had to be patient but it has been well worth it because everything for me is better now, libido, orgasms, stamina, energy, etc. And I have a huge appreciation for all of it!
I have done probiotics, antifungals and anti-candida diet the whole time.
Posted by C (Member # 6203) on :
Its good to hear positive feedback. I hope to be there one day myself. I am NOT
Posted by C (Member # 6203) on :
......giving up.
Posted by janet thomas (Member # 7122) on :
Here's a starter for you
Google Sotto Pellet
Posted by JimBoB (Member # 8454) on :
Chronic: I appears C and you are using DIFFERENT gels.
Or are you using Androgel also?
Jim. Posted by BostonLyme2005 (Member # 7680) on :
So far....So Great! Posted by Lymied (Member # 6704) on :
Hey C -
I am a year and four months into treatment....I did not mention in my past post that I did have issues with orgasms and the libido before and during my antibiotic treatment. In the last few months it has been coming back.
My first few months of treatment were crazy herx city...so don't think this is what life is going to be like forever.
My husband has been having issues too...he is still in treatment.
Just keep on treating and believe it will all come back....
Take care....
Posted by David95928 (Member # 3521) on :
C,
Early in what I now recognize was my illness I had a similar disconnected feeling. At the time, I told my doctor and he was puzzled. I had some luck overriding the problem with IM testosterone cipionate but it was never great.
The testosterone kept my level up around 600-800. About one and a half years into treatment, desire and function started to come back, not consistently but often enough to give me hope. Then a specialist I saw in SF switched me from testosterone to hCG. Since then, there has been a gradual but continued improvement in terms of sensation and desire. Interestingly, the hCG brought my level up to only about 450, yet, at this lower level, I still was much better.
By the way, I'm 55 so there HAS to be hope for your situation.
I really don't know what to suggest to you except to encourage you to keep seeking an answer. Also, don't give up on the antibiotics. I've been on Bicillin LA and Biaxin since January 2003 and still see gradual improvemnts in other areas such as cognition.
Posted by Andie333 (Member # 7370) on :
David, Lymied, Dolphin, Janet
You've all given me such hope reading your posts today. Maybe there's hope for me yet!
Thanks!
Andie
Posted by minoucat (Member # 5175) on :
about aggressive abx not helping...
if you're not treating the right thing, the abx can be as aggressive as a bull elk in season, but to no avail.
I spent years aggressively treating LD (not just with abx) but not the coinfections. Ultimately I found that treatment for babesia, then bartonella, had a very positive effect on my sexuality. In part it was simply the reduction of physical misery and the end of an 18-year headache that did it. But I also no longer had the numbness, the hypersensitivity to touch (had both at different times). The hyper-irritability has come and gone through the various tx.
Treating for neurotoxins and for toxins in general also helped significantly.
The hubby found that the testoterone cream was quite effective at times, but was no help when he was going through a herx (obviously, but it's worth pointing out -- sometimes you come to the end of a not-so-awful herx period and realize that you really were herxing and that's why things seemed so off kilter.)
I think some of the abx have libido-suppression as a side effect, too (aside from herxing). I found this to be particularly true of flagyl and tinidazole.
From my own experience, there's a huge burden of bad memories, physical misery, and emotional scars that people who've endured long-term LD end up shouldering. I think these are enormous obstacles to resuming/starting even non-sexual intimacy with someone.
After a while, it's difficult to build up the trust and enthusiasm to resume a sex life even when it becomes physically feasible. Not to mention the readjusting of expectations when you're sort-of-interested but just-barely-up-to-it. You can get to feeling that celibacy is just easier and kinder than trying to get on the "living to the fullest and then hitting the brakes" rollercoaster.
Posted by proud pup (Member # 4152) on :
If it makes any of you men feel any better ...
my hubbys testostrone level is only 140 and that is with 3 months of the andro gel and now he has just had his third monthly shot of Depo- Testostrone at 200mg. This last shot she said to up it to 300mg. Still nothing I mean NOTHING...
It does a big fat O for his energy not to mention his sex drive.
To be honest I would just love for him to have his energy back.
He is still moody at times.
Any one have ideas on that????????????
Posted by David95928 (Member # 3521) on :
200 mg. a month is a pretty low dose, as evidenced by his level. That amount every two weeks is common. Another point is that testosterone is pretty concentrated. 200mg. is just one ml., a tiny little shot. If he could do this at home and take 75-100 mg. a week, his level would be more stable. Testosterone has a half life of about six days. What this means is that for the first few days after a shot, his level will be at its highest. maybe too high. It would taper off to nothing by the end of two weeks, not to mention a month. Smaller. More frequent administration reduces the "sawtooth" effect.
Posted by proud pup (Member # 4152) on :
Thanks David,
I will be questioning his doctor next week about the dose.
I give him the shots at home. Should note to that he weighs 420lbs if that makes a difference in the amount of medicine.
Any thoughts??
Posted by David95928 (Member # 3521) on :
I would think his size would matter in terms of dosing. But it's my understanding that response is idiosyncratic. My guess is that his doctor will want to increase the dose and see where that gets him. Bear in mind that with male HIV patients, 400 is the cutoff for starting them on tesosterone. That is, protocol is that it should be over 400.
Posted by proud pup (Member # 4152) on :
David
I am not sure I understand about your last post?
He is not HIV.
DO you or anyone else know at what level his testostrone level should be to feel good .
It says I beleive 240 and above is normal.
Last test was 140 and he feels no better
as far as energy, mood, and SEX.
I hear some men say after one shot they are bouncing off the wall with engery. This does not happen with him. I give him the shot and we see no difference.
While we are on the subjuct........
have any of you tried viagria(sp?)
Posted by JimBoB (Member # 8454) on :
I tried Viagra, BEFORE I had Lyme, as I had ED because of my colon removal in 94.
I had 5 pills of it, but only two really worked and the side affects were atrocious. Needless to say, I did NO more after that.
Since Lyme, last year, I tried so Cialis and that did absolutely NOTHING FOR me, on some undersirable side affects. (Still have some).
AND I took a couple Levitra; (still have some). IT did better than the other two for me.
But NOT as good as I thought it should. Only slightly better than the Yohimbine I have been taking since 96. And, again far more side affects than the Yohimbine.
I am NOW taking some Yohimbe Bark that I encapsulate myself. But just been using them, once a day, for a couple of days, so haven't noticed anything with them yet. I still take the Yohimbine, but instead of every day now, I only take one about 30 minutes before sex.
Jim Posted by David95928 (Member # 3521) on :
What I meant was to illustrate that a level of 400 is considered low enough for medical intervention. I think the "normal range" is somethng like 250-1100. That' a big spread and it seems doubtful to me that 250 would be normal for more than a very few men.
Posted by proud pup (Member # 4152) on :
Thanks David and Jim.....
Anybody try Spanish Fly???
Posted by lymeHerx001 (Member # 6215) on :
anyone ever try getting better from lyme and depression?
im in my 20s and have serious problems when it comes to sex.
Some stray from the mental side,,, i know
Posted by minoucat (Member # 5175) on :
Someone mentioned their hubby having very low energy as well as low sex drive and apparently low testosterone.
Adrenal and thyroid functon might be part of the problem (never once in resolving my LD problems has there ever been one simple cause or tx!) Also vitamin B.
[ 25. February 2006, 01:03 PM: Message edited by: minoucat ]
Posted by JimBoB (Member # 8454) on :
Proud Pup:
No, have you? That is something I have heard about since I was a kid, but didn't need back then for myself, and don't even know how to get it.
Jim Posted by proud pup (Member # 4152) on :
I agree that the first thing to do is get proper Lyme treatment.
When husband was at his sickest the last thing on his mind was SEX.
Now that he seems to be what is remission from lyme, we both want our sex life back.
Thanks for the info in the above post.
Posted by Andie333 (Member # 7370) on :
I think you're right, pup; it's really hard to feel all amorous when you don't have the energy it takes to walk across the room and answer the phone.
I'm taking an IM vitamin B complex now and really feel that might be giving my energy level a needed boost.
I think the rest of it is just giong to take time and healing.
Andie
Posted by Christine202 (Member # 6158) on :
I know I'm a little late posting on this topic but I have to add my persoanl experience....
I didnt have ANY Libido when I was at my worst....in the last couple years as my Lyme has finally gotten SOME control it has come back... I actually feel semi normal again! WHich is good considering I am only 34 and hope I have some good years left!
Just wanted to post something positive since U am someone who was VERY VERY ill with this disease years back...
and I was able to regain, so I am sure many of you will too. Good Luck Posted by Andie333 (Member # 7370) on :
That's such a great post to read, Christine.
All the positive posters here have really given us hope in my family.
This just isn't the kind of thing we feel we can talk freely about with anyone else (so of course, I post it all on a public bulletin board. )
At one point prior to Lyme dx, we briefly talked about seeing a sex therapist. I'm just glad we didn't throw a lot of money in that direction.
Andie
Posted by TicksinNC (Member # 1510) on :
If a womans peak is in her 30's then I am missing my darn peak and really pissed off! I hate having LD, it litterally has taken my life away.
I actually has someone tell me, "Well you have a 14mth old, you must be still having sex". I replied with, "Well, geee, that was probably the ONE time that month we had sex and got freakin' pregnant to boot!"
That's why we call Jonathon, although very well loved, our "Ooopss baby". You would think I would have remembered that abx and birth control pills don't mix.
Posted by JimBoB (Member # 8454) on :
Angela:
I have 5 children. 4 of them were ooops babies.
Posted by Annie M in SWTX (Member # 8828) on :
I tell you guys.....
When I started taking antidepressants about a decade ago my libido was getting so low that I couldn't get arroused if I tried. It was very frustrating. I gave up on it. After a few years my body got used to the anti'ds and my libido slowly came back.
I found a guy I fell madly in love with and we were going at it 4-5 x day.... at anyplace we felt like doing it , heh, heh (fun and exciting). I noticed some pain during intercourse, especially if my legs were in certain positions for too long, and I could barely get straightened out after being bent like a pretzel for a while there.... lol (funny, but true) hurt like hell to straighten my legs out.
I always thought I had arthritis, and I had MRIs, X-Rays, and no one could find anything. I was also suffering with dryness at times (even with lube) and I would split and bleed (talk about hurt)-after that I couldn't tolerate sex for several days until I healed, then I would split again.... well, no mds had any answers for that. And he would lose his erection thinking (worrying) he was hurting me, so we had some problems.
Well, needless to say, after 2.5 years together we called it quits. Not long after I was finally dx with Lyme. When I started my aggressive abx therapy with IV Rocephin and Flagyl I was only interested in getting well - not in getting laid.
So... 8 mos of IVs and I finally got my port out - oh, but my gallbladder came out before the port did (sigh). After the port - I was on oral abx of Doxy, then I went to a regemin of Biaxin, Flagyl, and Isoniazid (INH)...well. The Biaxin and Flagyl wasn't doing the libido thing... however, it seemed to me that when I started the INH into the mix I had such HIGH urges that I could not stand it.
I couldn't concentrate at work coz all I could think of was whom I could get to meet me at my house for a "nooner." Or, have to relieve myself somehow or I could not go on. It was like being on Spanish Fly, and really kind of pitiful because I felt like a ***** in heat and all I could think of was getting the urge taken care of.
I started signing up on swinger sites and meeting people (and still do). I stopped the 3 abx combo, but the minocycline I'm doing solely now is helping bring back my feelings (nerves, blood vessels) as well. Not as bad, but at a more "normal" sort of rate.
I don't want a serious relationship, so I have a few "buds" that I can count on now and then, and they are all in their 20s and 30s, heh heh. Me, I'll be 46 on Monday (27th) and it works for me. I get all the fun w/o the drama. And my libido has gone back to what it should be for a lady in her 40s.
There is hope folks. Just keep believeing it.
After my divorce I was not interested in sex for 4.5 years. Now I'm making up for lost time before I get TOO old and turn into an old lady. EEK!
I'm having major fun! Keep on smilin
Annie
Posted by C (Member # 6203) on :
Annie M......where do you live??? I usually have lunch times available!!!LOL
Posted by JimBoB (Member # 8454) on :
C I thought YOU couldn't DO ANYTHING?
JIM Posted by C (Member # 6203) on :
Believe me, I can't, but that was too good to pass up!
Posted by JimBoB (Member # 8454) on :
Nice to be able to STILL dream, eh? Posted by troutscout (Member # 3121) on :
I will say I was like Annie....
good thing I was married. I was so horny at times I just releaved myself...when I could.
Then the infection got TOO bad.
I have heard others tell me they had similar problems with the urge, etc.
Trout Posted by C (Member # 6203) on :
I wish so much for that problem. I seem to be on the opposite end of the spectrum.
![[Cool]](cool.gif)
![[Frown]](frown.gif)
![[Smile]](smile.gif)
![[hi]](graemlins/hi.gif)
![[Big Grin]](biggrin.gif)
![[bonk]](graemlins/bonk.gif)
with a sore noggin!!!
![[Wink]](wink.gif)
![[cussing]](graemlins/cussing.gif)
![[shake]](graemlins/shake.gif)
![[Eek!]](eek.gif)
![[Roll Eyes]](rolleyes.gif)
![[woohoo]](graemlins/woohoo.gif)