Lyme Disease Community
A bit of an update from the UK
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This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, and Joint Pain. Topics for discussion also include Living with Lyme Disease, Babesia, Bartonella, Rocky Mountain Spotted Fever, Anaplasmosis, other Tick Borne Diseases, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments

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A bit of an update from the UK

8516412?1352895588
Hi guys, well after my weird turn on Friday and the doctor coming out  I decided to do some more research. Basically i found that at Porton Down Salisbury where they do testing for major stuff and secret stuff too, they have been testing Lymes since April and running a workshop for our medical practioners in all things Lymes etc.....

So I spoke to them on Monday and spoke to a lady there who was brilliant with me, and told me to ask my doctor to ring them and she would assign her a Lymes medic to talk to. I might have to have more blood tests that will cost me money but i dont care. So I wrote to my doctor asking if she would talk to them, as they will advice her what to do next etc, and how i should be coping with treatment and if i need any etc etc.

Anyway i know she doesnt work until today.

Well, when i got up my right side really hurt me, and was itching and sore and tingling...and yes there it was again rash right across and round the back.....

I took photos...

Funny enough she has just rang me and said she is going to ring Porton Down Health Protection Agency and is popping in to see me in a bit to check my rash.

So she is really trying hard isnt she to help me.

In the UK we have to have things positive because of money drugs cost, so if i can get a real diagnosis of Lymes i might get proper treatment even taken into hospital to have the treatment done properly.

So sort of excited and worried at the same time. I wrote down for her all the test results, dates I was abroad etc.

But she is doing it....so pleased.

This is my rash today. Funny enough yesterday on the front of my stomach i had like stretch marks just showing on the skin...never had that before...they have gone now though.

18 Comments Post a Comment
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This is really fantastic news and I hope you get some proper help now!
I also hope it may be the start of better treatment for lyme sufferers in Britain now.
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Good news, now tally ho!
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That is terrific! I am so glad the health service is starting to pay attention to Lyme Disease.  You would think they'd be highly motivated to get people well, as the same government that pays for health care is paying unemployment/disability for Lyme sufferers too sick to work.

The sooner the UK and other countries reject the IDSA definitions, testing, guidelines, et.al., the better!

In the meantime, sorry your side hurts. The stretch marks up your stomach sound like a picture of a Bartonella rashI saw on the Internet once (can't remember where).

It must be a relief to know your doctor is on board.
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551343_tn?1350880995
Rash came back with a vengeance yesterday more lesions and sore and itchy. I dont feel too good, my legs really hurt and i have an ice patch on my right thigh. Oh well still waiting to hear from doc now. Must be patient....
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Have you tried the epsom salt baths and magnesium supplements? Don't know if it will help the rash, but it should help your legs. I found Chlorella (the broken cell wall kind) helped reduce my herxing. Others have recommended activated charcoal (although you have to make sure magnesium or charcoal won't interfere with any of your meds).

My doc also recommended quercetin as being very helpful for some people. I didn't take it, though, so I can't comment on it.

You are definitely one of those cases where it gets worse before it gets better.  Hang in there!  Don't give up... the herx does ease off.  For me, it's usually about a week. It happens every time I start a new antibiotic or other bug killing med.
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Questions...does the rash hurt when it appears?  Is it warm to the touch at any time?
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My Bart's rash hurts when it first comes then usually fades but I have one that hasn't healed in over a year. Nothing helps Bart's rash go, LLMD and I have tried everything.
Hang in there.
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551343_tn?1350880995
Hi hun, i cant do epsom salt bath as i dont have a bath.

The rash was warm to touch and red and flared the other day, then it calms down. I have it really bad at the moment it has spread up the side of my right body like someone has scratched me. It kind of itches but its deep inside more then the actual marks. My right side is tingling at the moment and I darnt touch myself where the scratch marks are as it hurts and will itch.

Funny enough on my right side above my kidneys it fells like spasms or tingling pins and needles but i dont have a rash.

I am waiting for my doctor to tell me what to do next. I just feel like going back to bed right now, feel really ill to be honest.
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Here's an off-the-wall question:  could you have Herpes virus that is causing the painful and tingling rash?  Just a thought.  You might find some photos online to compare to.

About Epsom salts, I've read that you don't have to submerge in a bath for it to help -- even a foot bath works, because the salts are absorbed through the skin and then are carried through the body.  Of course, the more skin surface that is in contact with the solution, the greater the absorption.  Just a thought.

You could also try a cloth soaked in warm water and magnesium and place it gently on the affected area, if that wouldn't be too painful.

I take magnesium capsules -- avoids the whole bath concept but has the same effect.  Any magnesium variety ending in "-ate" is said to be most absorbable in the body:  magnesium citrate, aspartate, orotate, malate ...
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If the rash and itching and pain are caused by barts, then a painkiller called lyrica (pregabalin) will stop the pain and itching.  As far as I know it won't make teh rash go away (never had one myself, just crazy itching and occasionally pain). You start lyrica on a tiny dose and gradually build up til  you find the dose you need to do the job. I've been taking it for quite a while, it's excellent adn has no side effects (except makes you tired for the first 10 days, which then wears off).

Instead of an epsom salts bath, you can buy cream instead. I tried one by Kirkman, but there are various types you can buy online.
Some people cannot tolerate the sulphut yhough, like me, but I am fine with normal magnesium tablets.
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551343_tn?1350880995
Hi hun, i cant take lyrica have tried it for my MS spasms and stuff it makes me dizzy and disorientated and i had a bad fall when taking it.

I will look into the the cream not heard of that.

I didnt know i could just soak my feet in the epsom salts thats cool, thanks Jackie will buy some today and try it. I have magnesium tablets which i have been taking for a day or too after Rico I think mentioned it.

Its not the Herpes virus, the doctor saw the rash. Its clearly defined scratch marks, long like LESIONS..i get tingling in the area too which is confusing i suppose. My GP said its along the nerve line by the looks of it. That is why the first doctor thought the ones i had on the left were shingles. But my doctor now doesnt believe this is correct.

Oh something else it looks like BRUISING along several of the lines, quite distinctive. Someone told me this is classic lymes....presentation.

What ever it is i wish it would go away its worse now and has spread.

Cant wait to see her this week coming. To sort it out. Maria xx
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I ditto the comment about an Epsom salt foot bath.  The bottoms of our feet have a high concentration of pores, and you can absorb quite a lot of magnesium through soaking your feet in it.

I also have a magnesium lotion, but it leaves a sticky film on the skin that I don't like.  Better is the magnesium oil. I rub it in to my arms, legs, and torso, but you can only do a little at a time, as too much can make the skin sting. I don't think I would put it on any break in the skin, such as lesions as that would probably hurt. A nice warm towel soaked in Epsom salts also sounds like a really good idea.

Another thing my PA recommended more than once for dealing with pain and inflammation was a castor oil pack. I bought the stuff but then didn't do it because I needed it on my ribs and gallbladder, and it stains any fabric it touches. I couldn't figure out how to put the pack on my ribs without laying on a sheet of plastic. That didn't sound appealing to me.  But some people swear by them. There is plenty of info on the Internet about castor oil packs.

I am sorry you feel so ill.  Get plenty of rest and fluids, and don't feel like you have to do anything.  Just imagine all the dead bacteria there must be!  Die, bugs, die!
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I was cautioned not to overdo the magnesium, because it can (according to Dr #1) damage the kidneys, but then Dr #2 said No, you'll get diarrhea before your kidneys are harmed, so scale back if that happens.

So magnesium should be used wisely, but it surely helped me, and I had no problems.  Hope you feel better soon!
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Sorry to hear you can't take lyrica.

Re magnesium, my doc says it's safe to take up to 900mg daiy, that's the max and you're safe at or below that level.

If you use cream or epsom salts I don't think you can measure it though, can you?
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I think (but don't recall why or where I read this) that absorption of Mg through the skin will cease when body levels of Mg are adequate.  

I take 400mg/day with no problems, and I'm very sensitive to *everything*.
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I asked my nephrologist about magnesium and she said it will only hurt a failing kidney, and that I could take supplements without worrying about it as long as my kidneys were okay.
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I am using a castor oil for my hands and then wear gloves..it really helps me
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The problem comes in when trying to define kidneys that are not okay, or hearing from the doc "Don't take too much", without any indicator of what that means in real life.  I had one sneering doc tell me flatly that I would damage my kidneys if I took supplements, with no indication of where the threat level is.  Another doc told me that if I got diarrhea, then back off on the magnesium dose.  So I think we can definitively say we should not take too much magnesium.  Sigh.

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