Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
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posted
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.
Posts: 26 | From NJ | Registered: Sep 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I've lost my gall bladder AND my libido
Andie
Posts: 2549 | From never never land | Registered: May 2005
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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! Posts: 460 | From Illinois | Registered: Aug 2005
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JimBoB
Unregistered
posted
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.
posted
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.
Posts: 26 | From NJ | Registered: Sep 2004
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posted
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.
Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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posted
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.
Posts: 925 | From California | Registered: Sep 2004
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
Here's a starter for you
Google Sotto Pellet
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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JimBoB
Unregistered
posted
Chronic: I appears C and you are using DIFFERENT gels.
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....
Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
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.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
David, Lymied, Dolphin, Janet
You've all given me such hope reading your posts today. Maybe there's hope for me yet!
Thanks!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
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.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
posted
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????????????
Posts: 191 | From Eastern Shore. Maryland USA | Registered: Jun 2003
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
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.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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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??
Posts: 191 | From Eastern Shore. Maryland USA | Registered: Jun 2003
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David95928
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posted
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.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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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?)
Posts: 191 | From Eastern Shore. Maryland USA | Registered: Jun 2003
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JimBoB
Unregistered
posted
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.
David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
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.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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Anybody try Spanish Fly???
Posts: 191 | From Eastern Shore. Maryland USA | Registered: Jun 2003
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
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
Posts: 2905 | From New England | Registered: Sep 2004
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
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.
posted
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.
Posts: 191 | From Eastern Shore. Maryland USA | Registered: Jun 2003
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Andie333
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posted
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
Posts: 2549 | From never never land | Registered: May 2005
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posted
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 Posts: 437 | Registered: Sep 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
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
Posts: 2549 | From never never land | Registered: May 2005
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posted
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.
-------------------- Angela Posts: 191 | From Benson, NC, USA | Registered: Aug 2001
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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!
posted
Believe me, I can't, but that was too good to pass up!
Posts: 26 | From NJ | Registered: Sep 2004
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JimBoB
Unregistered
posted
Nice to be able to STILL dream, eh?
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troutscout
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Member # 3121
posted
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
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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