Author Topic: Cured. It Feels Amazing. Lyme and other possible causes  (Read 29229 times)

PrometheanFlame

  • Full Member
  • ***
  • Posts: 50
Cured. It Feels Amazing. Lyme and other possible causes
« on: November 27, 2014, 12:25:35 PM »
I'm typing this out as the numbness of the most explosive orgasm I've had in years still lingers in my brain. Yes, Finally I feel I am cured, or at least that I'm on the right path.

My diagnosis: Lyme Disease

Treatment: Doxycycline

I didn't want to type this so early in my treatment, but its been a week, and just in case there are other men like myself suffering with similar ailments, i feel compelled to get this out to the forum as fast as i can. I recently discovered that I have had lyme disease for the past 4-5years. A day after i started taking the doxy, my heart beat felt different, and within the second day, my libido returned ever so slowly. It's almost like my central nervous system re-awakened. Orgasms feel amazing, it's like I can breathe again. The return of feeling and emotions are worth the torment of the Herx response.

I had other symptoms along with the libido and ejaculatory anhedonia. The most prominent being a sore throat that seemed to disappear and return mysteriously, extreme fatigue and depression. There are many sites out there detailing lyme and ways to cure it, so I won't pad this post with too much of that information.

The EM rash I had didn't look like your typical lyme rash either. If anyone is suffering from similar symptoms, I advise you try and get treated on clinical terms as the test doctors use to check for Lyme is not very reliable. If you feel improvement within the first few days of antibiotics, then you probably have a similar problem to what I had.

If you are in the UK like myself, this site was very helpful:
http://www.lymediseaseaction.org.uk/

This was also a good source of information:
http://www.hopkinsarthritis.org/arthritis-info/lyme-disease/
« Last Edit: April 28, 2015, 10:45:54 AM by PrometheanFlame »

needhelpage31

  • Hero Member
  • *****
  • Posts: 268
Re: Cured. It Feels Amazing. Lyme and other possible causes
« Reply #1 on: November 27, 2014, 09:07:20 PM »
Wow! I am glad to hear of your incredible improvement. (I'm a little envious, too.) Thank you for posting. I live in an are in the U.S. where they warn us about ticks. I've wondered in the past if I might have it - though I have no recollection of a tick bite, ever.

I just read through the links you provided, plus some others. Would you answer a few questions for me?

1) How do you know you have Lyme? For example, did you have a positive blood test?
2) How do you know it began 4 to 5 years ago?
3) I have taken Cipro in past years, for prostatitis. Should that have resolved Lyme, if I have it? Or is there something particular about doxycycline?
4) Are you experiencing that Herx response?
5) You say you have a rash. What does it look like? I don't have a rash. But there is a spot on my hip that sometimes itches (in hot water, for example.)

Thanks, in advance, for the additional information. And please let us know if your cure persists.

PrometheanFlame

  • Full Member
  • ***
  • Posts: 50
Re: Cured. It Feels Amazing. Lyme and other possible causes
« Reply #2 on: November 28, 2014, 03:42:50 AM »
Well because I live in the UK, I had assumed that there was no Lyme disease here. Untill I read up on it properly.

1. I know I have lyme from clinical symptomatic reasons. I had a doctor who once suspected this, several years ago when I began having many health issues, but at the time I was convinced it was a fungal overgrowth, and was very anti antibiotics. I have not been tested for it, I just thought I'd try the doxy for a week and see what happens.

2. 4-5 years ago is when all my health issues started. Lyme is multi-systemic, so I was going from specialist to specialist for years, and nothing ever got cured. They were all stumped, and eventually had to lean back on the "it's all psychoogical" self defence mechanism. Also, the Lyme Rash first showed up 4-5 years ago, and it was at a time where I was going to the woods quite a lot.

3. I'm no doctor, but I have done my research. I'm not sure about those drugs you mentioned, but what is generally said is that you need a tetracyclic antibiotic to cure Lyme or other similar bacteria. The Lyme Spirochete is quite similar in form and behaviour to syphillis, and doxy works well on both. I've also read that lyme has the capability of entering the cerebrospinal fluid, and that at a certain dose of doxy, it has the capability to cross the blood brain barrier.

according to this: http://www.hopkinsarthritis.org/arthritis-info/lyme-disease/lyme-disease-treatment/
The drugs recommended are doxy, amoxicillin, ceftriaxone amongst others. All given at different stages of the disease.

4. I experienced the herx the second day on doxy. I just felt very dizzy. And all the chronic ailments that have annoyed me in the past 4-5years flared up for while, before dying down. In all honesty the Herx wasn't too bad on my end. Not as bad as what they show on youtube anyway.

5. I have picture example of what my rash looked like. But you must keep in mind, sometimes Lyme doesn't present with a rash, so all cases are different.

My one looked very similar to this: http://www.lymediseaseaction.org.uk/wp-content/uploads/2011/05/EM-rash-arm-150x150.jpg

You should also check these out: http://www.lymediseaseaction.org.uk/about-lyme/rashes/
There are links in there to the DermIS website with more examples.

I hope my answers could be of help.

The most important thing though, that anyone with anhedonia to keep in mind, is to never give up. Don't stop, don't fall prey to the depression and debilitation. Not everyone has the same problem as me, but I do believe anything and everything can be fixed with enough research and will. Be steady in your research, and never stop till you are happy.

Never. Lose. Hope.

needhelpage31

  • Hero Member
  • *****
  • Posts: 268
Re: Cured. It Feels Amazing. Lyme and other possible causes
« Reply #3 on: November 28, 2014, 08:42:07 AM »
Thank you for the prompt response. Last night I went on a Lyme Association website and submitted a request for the name of a Lyme-literate doctor in my area. Hopefully there is one.

This seems totally worth trying.

I see that testicular atrophy is a symptom of Lyme and I believe I'm experiencing that. (Slowly.) If this is my problem, I've been regressing for 12 years. I hope that's not too late to treat it.

PrometheanFlame

  • Full Member
  • ***
  • Posts: 50
Re: Cured. It Feels Amazing. Lyme and other possible causes
« Reply #4 on: November 28, 2014, 09:48:36 AM »
I mentioned also experiencing testicular atrophy last month here: http://ejaculatoryanhedonia.com/index.php/topic,1817.0.html

My symptoms were strange, I didn't just become anorgasmic, I was incapable of feeling horny. You have nothing to lose by giving this a go and testing to see whether it is the cause. Antibiotics like doxy are generally very safe, and the only thing to look out for is restoring gut flora post treatment. Like I said I felt better during the very first day, and by the second day things were returning.

I can say, that I feel almost completely normal today. Libido has returned and orgasms feel absolutely amazing. However other lyme symptoms are still slowly improving.

I feel a little angry and bitter though, because I went to so much doctors and medical professionals in the past 5 years. I showed them everything, listed all the symptoms, and showed them the rash. In the end I had to rely on my own insight and knowledge. But to think that I've sort of wasted the last 5years of my life depressed and sick. It's really made me appreciate health, and not take my sexuality for granted. People who haven't gone through this won't understand.

I just know that there'll be someone on this forum with similar problems, and I hope that I can help them find help, faster than I was able to get help.

If you aren't confident in your GP, or don't want to self medicate, a LLMD is a very good place to start.

Good luck, and please do let us know how you get on.

needhelpage31

  • Hero Member
  • *****
  • Posts: 268
Re: Cured. It Feels Amazing. Lyme and other possible causes
« Reply #5 on: November 29, 2014, 09:44:12 PM »
I got an email back and it seems the nearest LLMD is 40 miles away. But I'm going to try and get an appointment there. As you said, it is SO worth trying.

Please post here in a week or two and let us know if the improvement persists. That would be the best thing of all!

needhelpage31

  • Hero Member
  • *****
  • Posts: 268
Re: Cured. It Feels Amazing. Lyme and other possible causes
« Reply #6 on: December 03, 2014, 07:23:00 AM »
PrometheanFlame: I have tried for several days to reach the Lyme-literate doctor, but the office has not returned my call. So I set an appointment with my own regular doctor for Friday. I will take a printout of your post with me.

In preparation I have a couple of additional questions I hope you can help me with:

1) How long has your doctor said they'll keep you on the doxycycline? (I ask because it seems the "standard" treatment is three to four weeks. But on Lyme sites I read that it might be needed for much longer. And you've had Lyme for a couple years.)
2) Did your doctor discuss or consider intravenous antibiotics for you?
3) Are you still feeling as good as you did last week?

Thank you!

PrometheanFlame

  • Full Member
  • ***
  • Posts: 50
Re: Cured. It Feels Amazing. Lyme and other possible causes
« Reply #7 on: December 03, 2014, 03:44:49 PM »
I will gladly answer your questions.

1. I should have made it clear, that I privately purchased the Doxycycline before even meeting with my doctor. The reason for that being was that the rash and the symptoms were so clear cut, that I didn't have the patience to wait for a week for an appointment, nor wait even longer than that for a blood test. I concluded my diagnosis based on clinical symptoms. I also have friends who work in the medical field, so in that way I am a little a lucky in being able to consult with people should I ever have a pressing question that I can't figure out on my own.

Currently the plan is Doxycycline for 4 weeks. The topic of chronic lyme disease is debated and disputed quite a lot. 4weeks is good enough for me to see how I respond to the medication. The medical literature contains contradictory evidence regarding how long it takes to heal with antibiotics. I have therefore concluded that response to treatment varies from person to person.

I have spoken to a medical practioner regarding what I am doing, and was given the go ahead since I have noticed immediate improvement.

2. Unless there are severe neurological abnormalities or arthiritic pain, intraveneous medication is often just as effective as oral medication. The european version of Lyme disease is also less prone to cause acute arthiritic symptoms, so that may also have a hand to play in why cases in europe are a little different to america.

With all this in mind, I will only consider seeking intravenous treatment if symptoms persist following the oral course. I once again reiterate that everyone is different, and others may have different needs to mine.

3. Most importantly I'm still as sexually healthy as I was last week, I can still feel pleasure, and still feel lust. I'm normal in that regard.

What I misjudged however was the Herx response, it took it's time, but it finally truly hit me a few days ago. I got a sore throat with some flu like symptoms, I can still feel them now. It's not too bad though, I'm busy with work amongst other things, so I just end up ignoring it and go about my day.

Because you are in America you have access to more resources and a larger dedicated community. There are 0 LLMDs in london. Also you can easily order an IgeneX lyme Test in the U.S. or so I have heard.

needhelpage31

  • Hero Member
  • *****
  • Posts: 268
Re: Cured. It Feels Amazing. Lyme and other possible causes
« Reply #8 on: December 05, 2014, 08:01:20 AM »
Two things:

First, I have kept a record for 12+ years of everything I have taken or tried, to try and fix this problem. Looking back in the past four or five years I found that on three occasions I took the antibiotic Cipro. This coincided with small but noticeable improvement. I had thought it was just the normal unpredictability of this condition for me, but your post makes me think there may have been a connection. I thought that it was fascinating that my records show this, though.

Second, this morning I met with my doctor. (The Lyme doctor is not available until February.) She's been very understanding of my search to find a solution to the anhedonia problem. I shared with her what you said, along with the above information. She agreed that it seems worth trying so she prescribed doxycycline and also ordered blood tests for Lyme. (I also gave the blood samples this morning.)

I will let everyone here know about the test results and my own personal results from the antibiotic.

PrometheanFlame

  • Full Member
  • ***
  • Posts: 50
Re: Cured. It Feels Amazing. Lyme and other possible causes
« Reply #9 on: December 05, 2014, 08:42:09 AM »
Glad you were able to get help. I'm very interested to see how you respond to the doxy after a few weeks.

no_longer_numb

  • Full Member
  • ***
  • Posts: 69
Re: Cured. It Feels Amazing. Lyme and other possible causes
« Reply #10 on: December 05, 2014, 03:12:05 PM »
Needhelp, I can't believe your doctor responded that way.  I have been ill since I was bit by a tick about 25 years ago (as a child).  I also have travelled to lyme-endemic areas.  I went to an ivy league educated rheumatologist and inquired about lyme (I have had severe joint pain for the past 10 years that responded to Manganese supplementation) and she basically told me I was full of shit and no tick tests were in order!

I am going to be tracking down an LLMD and hopefully get some reliable test results - the last thing I'm up for is another wild goose chase that could be expensive in money and time.  I do seriously think I could have lyme and/or coinfections.  This is completely batshit crazy that I am having to figure all of this out on my own, when I pay good money for health insurance.

One other comment to those who are looking at Lyme:  From my understanding, a great many lyme sufferers are found to have the MTHFR genetic mutation.  I know for a fact I have the mutation.  This mutation impacts how your body methylates, which means removing toxins, infections, metals, etc.  So it makes sense that lyme sufferers would have it more often.

Hell, if you ask me, the MTHFR mutation probably explains the controversy over the existence of Chronic lyme per se.

At any rate, you guys wish me luck.  I was bitten by a tick 25 years ago and have a multitude of chronic health problems that have seemed bizarre and whose diagnoses later get second-guessed.  Medical and psychological symptoms over time that defy diagnosis.  I also have had night sweats and unexplained fevers, gluten intolerance, and some neurological symptoms like the EA.  For me, it's obvious that I have lyme and/or tick borne illness.

Also, I read that manganese is used by the lyme bacteria, which could explain whey my joint pain of 10 years responded favorably to the 10mg manganese, as manganese helps with the synovial fluid in the joints!

NLN

PrometheanFlame

  • Full Member
  • ***
  • Posts: 50
Re: Cured. It Feels Amazing. Lyme and other possible causes
« Reply #11 on: December 05, 2014, 03:52:07 PM »
Needhelp, I can't believe your doctor responded that way.  I have been ill since I was bit by a tick about 25 years ago (as a child).  I also have travelled to lyme-endemic areas.  I went to an ivy league educated rheumatologist and inquired about lyme (I have had severe joint pain for the past 10 years that responded to Manganese supplementation) and she basically told me I was full of shit and no tick tests were in order!

I am going to be tracking down an LLMD and hopefully get some reliable test results - the last thing I'm up for is another wild goose chase that could be expensive in money and time.  I do seriously think I could have lyme and/or coinfections.  This is completely batshit crazy that I am having to figure all of this out on my own, when I pay good money for health insurance.

One other comment to those who are looking at Lyme:  From my understanding, a great many lyme sufferers are found to have the MTHFR genetic mutation.  I know for a fact I have the mutation.  This mutation impacts how your body methylates, which means removing toxins, infections, metals, etc.  So it makes sense that lyme sufferers would have it more often.

Hell, if you ask me, the MTHFR mutation probably explains the controversy over the existence of Chronic lyme per se.

At any rate, you guys wish me luck.  I was bitten by a tick 25 years ago and have a multitude of chronic health problems that have seemed bizarre and whose diagnoses later get second-guessed.  Medical and psychological symptoms over time that defy diagnosis.  I also have had night sweats and unexplained fevers, gluten intolerance, and some neurological symptoms like the EA.  For me, it's obvious that I have lyme and/or tick borne illness.

Also, I read that manganese is used by the lyme bacteria, which could explain whey my joint pain of 10 years responded favorably to the 10mg manganese, as manganese helps with the synovial fluid in the joints!

NLN

You sound very sure about your condition. I have the exact same symptoms as you. One of them was a lower back pain that extended from my coccyx down through to my leg. For a long time I had assumed it was my sitting position, I even brought new chairs. I just couldnt understand why my joints were aching, especially when they started to ache I was 22. When I herx hard, those symptoms flare up, so I can tell that their cause is not injury based nor sitting position based.

If I were to list all of my symptoms that I have experienced, including those that have flared up in the past few weeks, they would be a minimum of 40 all affecting different parts of the body. They have struck hardest when I go through a moment of immense stress. Like literally within minutes of a very stressful events, some of these would pop up with extreme pain.

I havent looked into methylation, but I will make sure to read up on it when I can.

I know I haven't been affected by this as long as you have, but I am convinced that anyone and everyone can cure themself of this illness. Don't fall prey to the fearmongering that goes on on some parts of the internet, you can beat this. Recently I've been reading about how some people have managed to rid themselves of lyme completely by following a herbal protocol for a couple of months(Some of them having suffered for as long as you).

Needhelp is lucky to have such an understanding and attentive doctor. I knew I had to fight my way to be taken seriously. At a certain point in time, even I started to believe that what I had was psychosomatic, that was until I gave the doxy a try, quickly all the BS faded. You have to fight for your right to good health these days.

I wish you the best of luck and just remember, there's always a way.
« Last Edit: December 05, 2014, 03:55:12 PM by PrometheanFlame »

no_longer_numb

  • Full Member
  • ***
  • Posts: 69
Re: Cured. It Feels Amazing. Lyme and other possible causes
« Reply #12 on: December 23, 2014, 07:12:59 PM »
Looking forward to further updates on this thread!

PrometheanFlame

  • Full Member
  • ***
  • Posts: 50
Re: Cured. It Feels Amazing. Lyme and other possible causes
« Reply #13 on: December 24, 2014, 05:41:02 PM »
Thought I'd add this update, since its been so long since I started the antibiotics. I finished the course about 1 week ago, and I still seem normal. Orgasm and libido are very active, and feel very similar to how I was before EA.

I'm eating really healthy and following a herbal protocol (http://www.buhnerhealinglyme.com/).

Since everything has started I've gained a new sense of self awareness. I'm very conscious of changes in my personality, and body. I have felt that the illness brought with it many physical symptoms, but also brought devastating psychological ones too. I have confronted these, and continue to do so. Though it feels like I have gone through hell and back for the past 5 years. I feel that they may have been wasted on something that I should have cured a long time.  I dont feel I have comeback empty handed. As cheesy as it may sound, I feel have gained a deeper understanding of the human condition. Such is the nature of a chronic illness. I have found this sentiment echoed by others with lyme, including the protocol herbal creator, which I find fascinating.

For all others suffering with EA, I feel your pain, I know what it's like. I hope my story has provided some hope for you.

needhelpage31

  • Hero Member
  • *****
  • Posts: 268
Re: Cured. It Feels Amazing. Lyme and other possible causes
« Reply #14 on: December 28, 2014, 07:11:51 PM »
One week after the meds and still feeling back to normal - that has to be about the most complete experience of a cure that I've seen on this message board. I am so happy for you.

As for myself, I have one week left of a four-week course of 2x daily Doxycycline. After 3 or 4 days I thought perhaps sex was a little better. But since then it's been just awful for me. I've had ejaculations that are completely pleasureless, with a couple that almost hurt. I've hoped that maybe this was me experiencing the Herx response. But it has not lifted. I will finish the last week of antibiotic.

I told my doctor that in my notes I could see that periods of some improvement coincided with taking Cipro. (This was in the past five years.) So I really hoped to experience improvement.

Still, the Lyme angle makes sense. I think it could be an answer for some EA sufferers.

Please stick with us on this message board and let us know if your improvement lasts.

I had two lyme blood tests run. Both were negative. I know this can be the case even if you do have lyme, but I would have like to have been positive just to know I was on to the right thing!