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Posted 1/13/2011 4:03 PM (GMT -5)
Hi there,

I live in Scotland, and Lyme Disease is deemed 'very rare' here. From what I gather this is due to poor testing and lack of understanding in our national health service than any other reason.

I have felt unwell on and off for a few years. It started with general fatigue, which I put down to stress. Then I had a few weeks where my shoulder and arm were sore. I work outdoors, have had a couple of tick bites in the past (no rash) and therefore am aware of Lymes so I asked about this. My doctor placated me with a week of (the wrong) antibiotics. The problem went away over time and I forgot all about it.

I then started getting lots of general coughs and 'colds', the odd dizzy spell and migrane-like headache, tiredness, irregular periods and pelvic pain. My immune tests came back normal, as did hormone tests and a pelvic scan. I was told I just had stress and IBS.

A few months ago I started noticing I always had a 'cold', with difficulty sleeping, runny nose, trouble breathing at night, mood swings and reduced exercise capacity. Then in Nov I suddenly got severe shortness of breath and chest pain. I went to my (new) doc assuming I had lung problems. Lung tests were ok, as were the following heart tests. I was given steroids which didn't work.

Due to my outdoor work, my doc thought to test for Lyme just in case. In the meantime he gave me a week of antibiotics for my chest which didn't help either. Instead, I started getting night sweats, numbness in right leg and arm, periods of confusion, dizziness, shaking, low body temp (down to 34oC at times) and severe fatigue amongst other symptoms. My lowest point was when I started losing sensitivity to my bladder and, and a 28 year old woman, started leaking urine. I couldn't even walk up the stairs.

The Lyme test took weeks. As nothing else had worked, my doc decided to try me on 2 weeks of 200mg Doxycycline while waiting. This started working after 3 days, and I noticed a slow but steady improvement. After 2 weeks I went back, was told my test (ELISA only) was negative so i was 'unlikely to have Lyme Disease'. I told doc about false negative % and he didn't entirely believe me. But at the same time he also couldn't think of anything else that could have responded to Doxy but not been cured (most other infections are treated by just 100mg for a week). He gave me another 2 weeks worth which is now finished, but had made it clear that I couldn't get more since it's 'unlikely' I have Lymes.

I am waiting to see one of the only 3 Lyme experts in the UK (2 weeks time), which has had to be privately.

Sorry for such a long scrawl, but I was wondering if this sounds like Lymes? If so, will I have to get a positive test to be treated further? And, how long would I have to be off the antibiotics for to get a positive result?

I would be very grateful for any advice you could give me.

Thanks,

Kirsty

Posted 1/13/2011 6:06 PM (GMT -5)
Keep fighting. I have never tested positive on Elisa or Western Blot other than through Igenex, a specialized firm. Your symptoms sound familiar. Have you ever been tested for co-infections? Make sure you are your own best advocate and research, research, research. There is so much yet to be learned from all of this that most of the medical profession does not even know. It took me 4 LONG years to get diagnosed and I am paying the price now but am on the long road to recovery. Keep positive but keep at it. Best of Luck.
Posted 1/13/2011 6:14 PM (GMT -5)
Dear Kirsty

I am from the Uk too, and I was diagnosed with Lyme Disease and Bartonella which is a co-infection of Lyme in November 2010 after a year of a mystery illness.

My first symptoms were very similar to yours, and I first went to my doctor after having chest pains and shortness of breath just like you describe. Unfortunately for me this was just the start of a very long battle with the NHS to find the reason for all my mysterious symptoms. I was also tested for Lyme 3 times which were all negative. I started researching and learnt how unreliable testing was for Lyme, and yet my increasing symptoms seemed to fit so perfectly. Unfortunately none of the many doctors and specialists I saw believed me, and I was pretty much written off and labelled with anxiety and depression.

I finally found an LLMD, and was re-tested using the western blot, and tested positive for Lyme and also the co-infection Bartonella. I have only been on treatment for 8 weeks now. I too have been prescribed doxy, but a 400mg dose per day plus lots of supplements and pro-biotics.

It is good that your GP has prescribed you some antibiotics, but 200mg per day is nowhere near enough to treat Lyme effectively. Unfortunately this is the standard dose based on the NHS guidelines, which our doctors have to follow.

It's great they you have an appointment with one of our very few LLMD's. I am assuming you are going to cardiff? I wish you all the very best of luck, and am confident that you will be in the best possible hands.

Best wishes

R x

Ps. Did you find that your symptoms got worse after taking steroids? Steroids are to be avoided if you have Lyme because they suppress the immune system, allowing the Lyme to run wild.
Posted 1/13/2011 10:44 PM (GMT -5)
Hi Worrypot!
Welcome to our forum! I am so sorry to hear that you have a need to be here, but I am glad you found us!! I am sure you will continue to see that we are a caring, helpful & understanding group!!

It would be good for you to read through the thread at the top of the forum titled "New to Lyme?...Start here!" as it has a lot of important info and links to some great websites.

From what I have read the U.K. actually has a different strain of not only Lyme, but Bartonella as well - I think. This will be something to keep in mind as it could prove to be a very beneficial piece of info when it comes to testing.

Tick-borne infections are supposed to be diagnosed clinically - by the symptoms you have, although very few docs that aren't Lyme specialists understand.

In order to find some info that may help you over in Scotland, may I direct you to www.canlyme.com/. It has links to take you to info relevant to your area. Click on the button "world wide support finder" on the left side of the screen.

But!! Don't leave us!!! We are one of the most active Lyme Disease forums from what I have seen & we would love to hear how you are doing!!

In my non-medically trained opinion, it does sound like you need to be evaluated by a Lyme-literate medical doctor as soon as possible, as it does seem to be a real possibility that you do have a tick-borne infection.

Doctors get to be the ones to decide if they will see a patient before they get the positive test result.

I hope this helps some.
Posted 1/14/2011 7:37 AM (GMT -5)
Hi worrypot, I too am from the UK and it looks like you, me and Littlehutton all have either initially seen the same set of Dr's or the NHS do not know anything about LD. I feel it's probably the latter. Seeing an LLMD is definitely the right thing to do and if it transpires you do have LD, I'm sorry to say, but be prepared for a long and costly journey, you will be dropped like a very hot chip by the NHS. My initial consultaion with with my LLMD was a few pounds short of £800.00, but now it was worth every penny as after 17months of abx I feel great, I'm hopeing that in Feb the abx with be stopped. A good LLMD will hopefully use Igenex for blood works and also test you for any co-infections, make sure that this is the case. Which part of the country is your LLMD in?

Traveler's right you must learn all you can so that you know what you're dealing with/talking about and to enable you to educate the Dr's and the people around you. In my experience even the closest people to you seem to feel uncomfortable talking about some elusive, mysterious , extremely smart bug that YOU know you have but, even Dr's don't believe it and will not treat it. If the Dr's rubbish it why should other people believe it? They are very quick to dismiss it after negative ELISA tests too, as littlehutton - I had 3.....all neg.

To give you some idea of treatment that UK LLMD's follow (you may be seeing the same LLMD as me as there's only a few to pick from) take a look at Bucci's thread, on page 2 or 3 and look for the title "Colapsing Knees" at the end of that thread is a basic rundown of the protocol I followed, it may prepare you as what to expect if you are dx with LD. As I said earlier I'm well on the way now to full health so something is working.

In the US the main infection is from the spirochete Borrelia Burgdorferi sensu stricto, although this strain is also in the UK there are also 2 more that seem to be more abundant in the UK and Europe. They are B.Garinii and B. Afzelii - all three do the same type of nasty stuff to you but all have slightly different main symptoms. Bb tends to affect the joints more than the other two where as B.g has more neuro/mental effects and B.a affects lungs and skin more.

By the way welcome to this great forum, you have found a good place. If you need to know anything just ask the very smart members on here and if you want to know about issues in the UK, if I can help you, that's no problem.

Good luck and keep us posted.

Miki
Posted 1/14/2011 12:08 PM (GMT -5)
I don't have experience with any of the TBI co-infections (fortunately), but I was wondering if the night sweats are more common with the co-infections?  Or maybe Lyme + co-infection?
Posted 1/14/2011 12:17 PM (GMT -5)
According to Dr. Burrascano's paper "Advanced Topics on Lyme Disease" night sweats are usually associated with Babaesia.

He also states that "Very severe Lyme Disease can be a clue to Babesia infection, as it will make Lyme symptoms worse and Lyme treatments less effective."

Although I have read where Bartonella can also effect LD the same way.

Hope this helps a bit.
Posted 1/15/2011 2:59 PM (GMT -5)
 

Hi everyone, and thanks so so much for all the friendly advice and help! I'm glad to find other people to chat to, and yet so so sad that many others have similar problems.

The more I read, the more it seems that the UK is just terrible with Lymes. I gather that in Europe they more regularly diagnose with symptoms alone, which makes a lot more sense. I spoke to a lovely man from BADA-UK before Christmas who told me there are only a very few LLMDs in the UK, and so I'm having to travel to Newcastle in a weeks time to see a Dr Daymond who is a consultant rheumatologist with interest in Lymes.

I have no more antibiotics left, finished on Thurs and am seeing own GP again on Mon. Was told that a month was the max since I 'don't' have Lymes. Will see what he says, but not much hope of getting any more. I have had terrible headaches all day, which had pretty much stopped in the last few weeks. Not sure if this is due to worrying about the treatment ending or the symptoms returning - or both! I've also been quite confused today, keep losing things and getting words wrong again.

And, yes Littlehutton, my symtpoms did get much worse after the steroids. At the time I thought whatever was wrong with me was just progressing and getting worse and the steroids weren't helping at all. I didn't even consider that the tablets could be making me worse. Looking back now this does seems likely - I didn't have numbness or shaking until after the steroids, although it could be a coincidence I suppose.

It's interesting to hear that so many people are diagnosed with depression/anxiety instead of Lymes. My visit to an out of hours doc with severe chest pain/shortness of breath was put down to anxiety. At that point I had had my heart/lung tests back ok but was still waiting for Lymes test. The out of hrs doc told me I could not have Lymes as I didn't have a rash and it doesn't cause breathing problems, told me I seemed 'fixated on Lymes Disease' and that it was all anxiety. At which point I cried, which didn't help my cause... Luckily my own doc has not yet gone down this route. I fear it's only a matter of time, though, especially as I did have a period of depression a few years ago due to family problems (now long since resolved).

Sometimes I wonder if I am just making it up, but I know it is only the out of hrs GP that has made me think that. It doesn't help that the only symptom that has so far been provable is my low body temp. Can't prove chest pain, dizziness, headaches etc. It's so frustrating!!! I feel like a fraud, especially when people ask if I've had my test back yet. I see the look of their face when I start with "The test was negative, but I think....". But I've always been a fit, healthy, active person. In fact, I have every reason to be happy as I recently got a promotion, have a lovely husband and good friends. I want to be well more than anything!!!!

Once again, thank you for all your support. I will let you know what the doc says on Monday, and how my consultant app't goes.

Kirsty

Posted 1/21/2011 7:45 AM (GMT -5)
Hi there,

Good news - I managed to get a referral letter from my GP to see the specialist. No more antibiotics though, so that's me been off them for a week now. Headaches and poor sleep have returned, and leg starting to feel a little numb again.

My GP said that four weeks of 200mg/day Doxycycline is very high (I know it's not) and yet he didn't suggest any other possible diagnosis for me. Think he's given up!

Does anyone know how long you have to be off antibiotics for to be likely to get a positive test if it is Lymes?

Kirsty
Posted 1/21/2011 8:00 AM (GMT -5)
You don't have to be off antibiotics to get a positive lyme test. I'm on antibiotics for almost 2 years and have tested positive during that time for lyme and coinfections. In fact, alot of people only test positive after being on antibiotics. Keep fighting. Don't listen to the doctors. I'm telling you - they do not know lyme. I also had the numb leg and arm and while I still have many symptoms, that one and many others have disappeared with treatment. You will get well but you gotta fight for it. Four weeks of doxy is nothing for an infection that can get into every cell and organ in your body!
Posted 1/21/2011 3:23 PM (GMT -5)
Wow, well that's something I didn't know. I thought you could only test positive without antibiotics. That makes me far more positive about seeing the specialist on monday :o)
Posted 1/25/2011 12:18 PM (GMT -5)
Specialist seemed to think Lymes was probably so will be writing to my GP to ask for me to get 400mg Doxy for 3 months to see how I do. This may need a fight...
Posted 1/25/2011 5:35 PM (GMT -5)
Be sure to keep us informed on how things go on you getting the abx as well as how you are doing!!!
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