Author Topic: Personal breakthrough (shocked)  (Read 1573 times)

RocketTN3

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Personal breakthrough (shocked)
« on: February 09, 2017, 11:23:06 AM »
Hi everyone, well I appear to have found the underlining reason for my EA : lyme disease.

I got myself tested late last month and it came back positive. The lab I used was in germany with a very good efficacy rate. Ever since I have been researching lyme and have found within the literature - both online and through speaking to lyme literate professionals - that I have and have had lyme disease for 20+ years. My symptoms started as far back as 1993-1994, around the time I first started experiencing lichen sclerosus. There are strong links between lichen sclerosus and borreliosis (lyme); all the other pieces of the puzzle now fit into place - the EA, the skin symptoms, fatigue; everything.

I just wanted to share that with you guys here and I suggest you get yourself tested immediately. I remember lyme being brought up by another member here some years ago, I wish I had listened to them and got tested sooner. It would have saved quite a few agonising years. I am so relieved because now I know the problem I can begin to treat it.

If anyone wants more information on where I got tested please PM me privately and I'll be happy to pass on the information, but please know I am in the UK, I don't know anything about lyme disease and treatment options in the US.

I would say if you are like me and have more symptoms than just EA, you get yourself tested! I can't stress this enough.

Peace guys and much love to you all in the struggle.

needhelpage31

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Re: Personal breakthrough (shocked)
« Reply #1 on: February 19, 2017, 05:42:50 PM »
I'm so happy for you, that you got a diagnosis!

I was tested for lyme 2 years ago, or so. But it came back negative.

For years I've believed (as others have said, too) that there are probably several different root causes for our EA problem. So there will be different solutions, too.

Let us know if treatment helps you out!

RocketTN3

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Re: Personal breakthrough (shocked)
« Reply #2 on: February 21, 2017, 02:46:13 PM »
Hi NHP, good to talk to you bro. Quite a while since I've properly devoted time to EA as once I became focused on lyme things started to become clearer.
I just want to re-draw some attention to NLN posting about lyme back in 2015:

http://ejaculatoryanhedonia.com/index.php/topic,1851.msg5407.html#msg5407

It's a shame he's not been on since April 2016 because I realise now reading back, him and I had the same flakiness on the head of the penis, amongst other symptoms and that they are all lyme related.

It's also become clear that lichen sclerosus is a skin disorder implicated in lyme disease. He is also quite correct in his aspersions about mycoplasma. Lyme does not come on it's own, in a lot of cases there are co-infections that accompany the borrelia. Some examples are : mycloplama, bartonella, anaplasma, babesia, rikettsiosis. You are more likely to get lyme + coinfection, than just lyme on it's own.

I really wish I had taken his views to heart back in 2015 and got myself lyme tested sooner.

Review this thread from a now inactive member 7 years back, for what I am doing now in the way of self-treatment:

http://ejaculatoryanhedonia.com/index.php/topic,161.msg832.html#msg832

Worth a very valuable mention is Stephen Harrod Buhner's latest lyme and co. publication:

https://www.amazon.co.uk/Healing-Lyme-Borreliosis-Coinfections-Rickettsiosis/dp/0970869649/ref=sr_1_5?ie=UTF8&qid=1487715283&sr=8-5&keywords=stephen+harrod+buhner

I want to get this mention in before I forget because I bought and read this book after I got my lyme results and it's very useful, evidence based research and reasoning.

In terms of lyme testing I am not are all surprised you tested negative. I can almost automatically assume you got tested through a physician that adheres to the CDC guidelines on lyme? If so, then they will have used outdated lyme testing such as the western blot which is renowned for producing false negatives. The test is not sensitive enough. There are many thousands that test negative but still have the disease, you could be one.

I researched and found a lab in germany called ArminLabs. They appeared to offer the most current set of tests for lyme. I tested positive for two different strains and they suggested I get tested for the co-infections but I have yet to get that done due to cost and in treating the lyme I will be treating any co-infections anyway.

The herbal protocol is structured around boosting the immune system and remodulating the immune system (changing the way thecells speak to each other). Borrelia and co. have very clever ways of remodulating the bodies immune system (manipulating cykotines) in order to sustain themselves and to hide from the bodies immune system.

What I am essentially trying to achieve is wellness, much as NLN describes, rather than a 'cure' at this stage. I think it is highly likely he has cured himself now though and fully recovered and since moved onto better things because he was almost at the finish line when he posted back in 2015. The cat's claw is a very useful immune remodulator so I am not surprised he noticed some change from them. The trouble is cat's claw is not going to do enough on it's own, that's where a herbal protocol like Buhner's is essential. I bought some cat's claw (as it's noted in that thread back in 2015) but I didn't take them for long enough to make a difference. Lyme and co. treatment protocols need to be structured and sustained for sometimes up to and in excess of 12 months to properly treat the disease. I knew nothing about lyme at the time so had no idea what I was doing with the cat's claw.

So once I read the book and devised a plan I decided to start on a a very potent protocol of different herbal tinctures (started today). I took two weeks researching what herbs and where to buy them. I found an online herbalist that stocked everything I wanted. I have just started on my first herb polygonum cuspidatum. The idea is to select one herb and increase the dose and then repeat with the next, slowly acclimatising the body and helping avoid major herx reactions. So far so good. I will report on this as I go.

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What you should do is contact ArminLabs in germany and see if you can get tested there. If there is lyme or a co-infection they will find it. The tests they use are some of the most sensitive. Very difficult to explain the science in bro-format like I am doing here, but the website lists everything and they were extremely helpful to me when I contacted them. Yes they are a lab, but they are also a very well accredited one and used by many to get lyme tested. The only criticisms I can see of them is from lyme disease deniers (those on the side of the CDC and USDA) .

Ashamedly, what I've discovered is that my country's national health service is of no use or help in both identifying and treating lyme disease or co-infections. I had a horrible experience recently where I saw a tropical disease doctor and they shut down any queries and I had about lyme. The doctor was staying within the guidelines of the CDC which are dangerously outdated and useless. So I've had no choice but to abandon the main health care system and self-treat with the help of a forum on the web which gives support to those recovering from chronic lyme. It was actually where Harrod Buhner was recommended (he has no affiliation with the forum by the way).

Definitely get yourself checked, and that goes for everyone here. If you cannot get help through conventional channels then find a private lab and get tested instead. If you find your doctor is in any way affiliated with the CDC or CDC guidelines avoid them at all costs. The CDC itself is dangerously downplaying the disease and has been for a number of decades. I'm not going to pretend to know exactly why that is, but I would think politics has a lot to do with it.

By the way, I do feel obligated to this forum for providing a means of support and a stepping stone to the eventual and long overdue lyme diagnosis. Forums like these exist because people are not getting diagnosed and treated as they should. I had lyme for 20 years, and I just hope that if any of you guys reading this think you are suffering with EA + a bundle of other seemingly unexplained symptoms, it is majorly important to get yourself properly tested for lyme.
« Last Edit: February 21, 2017, 03:00:24 PM by RocketTN3 »

PrometheanFlame

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Re: Personal breakthrough (shocked)
« Reply #3 on: March 06, 2017, 03:02:45 PM »
I'm just going to post this link here: http://patient.info/forums/discuss/aonm-armin-labs-warning-530528

I am researching arminlabs. Surely the mainstream medical world of the UK would support arminlabs if they were doing correct science. Interesting info about CD57.

RocketTN3

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Re: Personal breakthrough (shocked)
« Reply #4 on: March 13, 2017, 01:58:50 PM »
 I can not find one bad thing to say about ArminLabs. I read that guy's gripe in it's entirety and he appeared to be mainly unhappy with the customer service and blamed the lab for them not recieving the bloods, which he says he had to have done twice at his own expense. I didn't have a problem with this - sent them through and got the results back within the week if I remember.

As for the CD57 test I was aware of the ambiguity of it as a reliable indicator of immunosuppression, but I chose to have it done anyway. In fact Stephen Harrod Buhner does not think much of it either as he notes in the book. Not really much of a loss to me. I don't think just because the lab chooses to use it is a reliable source of data that automatically means they are fradulent? Look at how many people die from the mis - or improper use of prescription medication every year. I think it's one of the top 5 biggest killers? I think it's just a case of the established order not liking private (small time) labs helping people that have been failed by a normal MD. I mean, if my EA and other symptoms were in any way helped by what is available through the normal channels, I wouldn't be having to get help elsewhere.

The NHS - they told me the same sort of thing. The MD I saw just said she didn't recognise ArminLabs, but refused to explain why. She then basically shut down the conversation stopping me asking any further questions, so i went away not knowing what her problem was. I think the issue is a political one, i.e. one being waged between those that believe in Lyme and co. and those that wish to deny it. Most of those in the mainstream are schooled in old Lyme thinking, and they don't know any better than to question this. It's politics. Meanwhile patients suffer from the bickering and lack of consensus.

The Elispot I tested positive on - I see - it isn't mentioned by that poster within their complaint. Which way do I turn? A lab tells me I have Lyme and the mainstream doctor says I don't but refuses to explain anything about the tests and why they have a problem. Given that all my symptoms, including EA have persisted, naturally all I can do is believe it because what's the alternative? Continue to live with chronic symptoms including EA until I eventually give up or kill myself.

Whether or not a normal MD thinks I have or have not got Lyme - it's not going to make a difference to my chronic bundle of symptoms and so I am treating myself for lyme and co. and have turned my back on normal MDs. It's entirely up to you and anyone reading this what you choose to do. All I'm saying is I believe and trust in the lab, it's the one I used. Also to say at no point was I talked into any treatments. The lab offered further tests but nothing in the way of a treatment plan. I found the customer service extremely good, the lady I spoke to answered all my queries without any provisos.
« Last Edit: March 14, 2017, 04:47:02 AM by RocketTN3 »

needhelpage31

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Re: Personal breakthrough (shocked)
« Reply #5 on: April 06, 2017, 05:57:27 AM »
Sorry to hear about your troubles with your doctor.

How can you treat yourself for Lyme, without him/her?

Jabele

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Re: Personal breakthrough (shocked)
« Reply #6 on: April 06, 2017, 03:55:58 PM »
Hey. I am a female but I too recently was dxed with Lyme and likely have had for at least 10 years

I also have low sex drive  (which has improved slightly lately) and orgasmic abhedonia, esp with vibrators. I can feel like a 1 or 2 out of 10 when I hump or rub against the floor which is how ive always masterbated but feel a 0 with vibrator tho I get more contractions and build up, I feel nothing. 

I never really had good orgasms in my life...maybe 2 top.  I also didn't attribute to Lyme but now I wonder if it's related. I also had adrenal issues  (since 13).

Things have improbed slightly but I know I'm not 100%. What is it about Lyme that causes this. Is it immune or cell related? I don't quite get it.

How is your treatment and what effect has it had on your sex life and orgasms?

RocketTN3

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Re: Personal breakthrough (shocked)
« Reply #7 on: May 28, 2017, 09:03:40 AM »
Hey. I am a female but I too recently was dxed with Lyme and likely have had for at least 10 years

I also have low sex drive  (which has improved slightly lately) and orgasmic abhedonia, esp with vibrators. I can feel like a 1 or 2 out of 10 when I hump or rub against the floor which is how ive always masterbated but feel a 0 with vibrator tho I get more contractions and build up, I feel nothing. 

I never really had good orgasms in my life...maybe 2 top.  I also didn't attribute to Lyme but now I wonder if it's related. I also had adrenal issues  (since 13).

Things have improbed slightly but I know I'm not 100%. What is it about Lyme that causes this. Is it immune or cell related? I don't quite get it.

How is your treatment and what effect has it had on your sex life and orgasms?

Hi Jabele, sorry I have only just seen this post. In honesty I have not been frequenting the forums much lately.

When I got the lyme diagnosis I was shocked but as time has gone on I've become more doubtful of the diagnosis. The trouble is that mainstream doctors don't acknowledge the disease. The private labs may do, but of course there are those that stand to gain from offering lyme treatments and tests. The tests available at a price are extremely sensitive, it may be they are picking up a disease or infection I once had which has since gone. Who do you believe?

I began purchasing tinctures online but the cost quickly spiralled. The forums out there for lyme are great, but on the downside there are many people who are self-diagnosed and self-treating. It's difficult without real face to face support, and that is extremely costly. There is the question of who to trust.

As you can probably gather from this I lost my impetus to continue on down this road, and stopped paying much attention to the private lab diagnose but did continue on with the nutritionist protocol, which mainly involved eliminating any issues within the gut and then (which I'm doing now) taking various vitamins and minerals (supplements and whole food sources) to boost the immune system. My energy has increased and overall wellbeing, but in honesty my EA is the same it ever was. This is very depressing to me of course.

Sorry to hear about your troubles. I really wish that I could say for certain what/what isn't a contributing factor. The truth is I don't know. Even on the lyme support forums, there are very few that report lichen sclerosus (an inflammatory skin disorder I have on my foreskin which causes tightness) and even fewer report orgasmic numbness. So I have to be careful not to draw parallels where in fact there are none.

Of course fatigue, tiredness, anxiety, depression, those sorts of things, overlap with many chronic and not so chronic diseases. It's likely anyone suffering from disease is going to have energy issues. So, really, what can I draw from this? I would rather avoid institutionalising myself with the lyme diagnosis, there is just not enough evidence.

Likewise, on here, I appear to be the only one with lichen sclerosus, so perhaps I need to face facts and deal with the fact my problems are unique to me, and that no matter how hard I try to find the perfect explanation on the web, my problems are unique and maybe cannot be explained or cured with some perfect plan. The harm is in continually trying to find the perfect answer, because it's so easy on the web to find evidence for anything, even if it's false or inaccurate.

All of my recent tests have come back normal. The MRI of the brain was normal. Thyroid was normal. I still have the low FSH and low SHBG readings, a recent spermatology test appeared to be normal. All I really have left to do is exhaust the physiotherapy route. Although I've seen a physiotherapist, they did not specialise in the pelvic floor, so that is something to try. I've also yet to see a chiropractor. For the lichen sclerosus I see a dermatologist and continue to try different natural treatments for it. So far the only thing that helps is a steroid ointment. It's difficult so say whether the lichen sclerosus is related to my EA. I think most likely is that I am unlucky enough to suffer from both. I do not feel able to get into a relationship, and it's stopping me. I would like this to change in the future but it's unlikely unless the lichen sclerosus goes away.