Hi newbie here looking for help. Also diagnosed with lyme

[kanebr]

Hi Everyone

New here and exploring the forum. I got very sick about 18 months ago after moving to a new house in the country. My symptoms were wild and varied but the worst of them were - extreme agitation, anxiety and a difficult to describe pain/discomfort in my lower back, Buttocks area causing my legs to feel sort of disconnected and strange. I think these strange feelings and sensations were causing the worst of my agitation/anxiety.

To cut a very long story short, about 10 doctors and many tests I finally tested positive for lyme (also found some mould toxins). I like in Scotland, UK but was tested by Igenex lab in the US. It was a positive IGM western blot which means there is no doubt I had lyme.

So my lyme was untreated for over a year which not good. I am now 6 weeks into antibiotics and some of my neurological symptoms are improving but its allowed me to focus on my worst of my pan which is what led me to this site. My worst pain (unbearable pain) comes from the area around my coccyx, bottom, bowel,perineum. Through the last 18th months this areas has given me hell. I think its behind my feelings f agitation, giving me a tight feeling in my lower back like my spine is being crushed, it makes me legs feel disconnected and causes leg/calf pain. I get flares where there is burning across the perineum and what feels like inside my bottom. These can last for hours and are unbearable. Even when not in a fare its constantly uncomfortable and sore. Sitting down makes sit worse, feeling really tight, crushed , sore and causing agitation.

I also experience very frequent urination and urinary hesitance but I have always experienced this before I was sick this for as long back as I can remember

I take lyrica for pain which helps a little (was great for first 2 weeks but faded), it also helps the agitation/anxiety a bit. I am only on 300mg per day and reluctant to increase as it affects cognitive function and i am still holding on to my job (barely) and I need to be smart/alert for my job). This is not enough and I also take cocodoaml (30/500), 3 or 4 doses per day. This is not enough and the effect of opiate painkillers also fade so I am now not getting enough relief. Its making life unbearable.

I found this site when first researching coccyx pain on the site http://www.coccyx.org/. This sort of pain seemed to fit my situation somehow but when I read about Pudendal Neuralgia it seemed to describe my pain much closer.

Im very glad to have found this site. I would love to hear anyone's opinion on my symptoms and experiences. Particularly interested if anyone has any insights in this condition being caused my MS or lyme. I had read that these conditions can cause Pudendal Neuralgia, through multiple infections or something.

Now I have identified with this I am keen to explore anything that will help me. I have emailed some of the doctors listed on this site and one of the physio's (who are local to me). There were only a few doctors listed in teh UK section. I am in Scotland and wondered if anyone can suggest any doctors in Scotland who might be knowledgeable in the area. I will obviously travel if I have to in order to see the right doctor

Any input, advice or suggestions would be greatly appreciated.

Many Thanks
Brian

[Violet M]

Hi Brian,

I've heard very good things about William Taylor in Edinburgh. He is on the list of PT's at pudendalhope.org. http://www.pudendalhope.info/node/60 You could check with him to see if he knows of any good doctors in Scotland who treat chronic pelvic pain in men.

Lyme disease can cause peripheral neuropathy. http://www.ncbi.nlm.nih.gov/pubmed/3670609 Hopefully your antibiotic treatment will help you to heal from the Lyme disease. As far as the neuropathic pain goes, sometimes it can linger even after your body is healed because your brain has developed a cycle of pain. Before you try any invasive treatments you might want to give mindbody therapy a try. You can read Ezer's posts about it on this forum.

It might also be a good idea to have an MRI of the lumbosacral area and lumbosacral plexus to check for anything obvious causing your symptoms -- impingments on nerve roots, etc. -- since you did have some symptoms before having Lyme disease.

Good luck,

I hope you can figure this out.

[kanebr]

Thanks so much Violet M for your post.

I had already emailed William Taylor physio who are pretty near me which is great. I will go and see them for sure to see what they can do to help and see if they can also refer to a doctor in Scotland.

Unfortunately I know all about the peripheral neuropathy caused by lyme, extremely painful. I have started reading some of Ezer's posts on mindbody therapy. I am very open to this and willing to try some of the techniques out.

I would like an MRI to make sure their is nothing structurally specific in play here. I had an MRI of my back before which was clear but I think that just went down to the bottom of my back. I take it an MRI of the lumbosacral area and lumbosacral plexus is specifically required to spot anything here?

Thanks again for your kind reply

Brian

[Violet M]

The lumbosacral plexus is the claw of nerves that is green and yellow in the picture found at the following link: http://www.pudendalhope.info/sites/defa ... Bro1-2.jpg
The pudendal nerve (PN) comes off of this claw so if there is anything impinging on the plexus it could affect the PN.

You can see a you-tube video of the lumbar plexus and while it's not mentioned in the video, you can see the lumbosacral plexus claws coming off the sacrum on either side down near the bottom of the picture.
https://www.youtube.com/watch?v=0__-M7ih_MA

I don't know for sure if these was included in your MRI. I had to have an MRI of the lumbosacral plexus ordered specifically because the first MRI I had of the spine didn't include it. Also, a pelvic MRI would be another MRI view you might want to get.

Violet