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Old 12-20-2011, 11:35 AM   #1
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Join Date: Dec 2011
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Jacuetta HB User
any help and advice would be appreciated

Hello,

I was diagnosed with 'suspected' Lyme Disease 3 weeks ago (during the presence of a typical looking bulls-eye EM rash. I know I must have been bitten by tick from a hedgehog in my garden 2 weeks before. (I had never heard of Lyme before or I wouldn't have gone anywhere near the hedgehog).

I was prescribed 2 weeks of doxycycline (100mg x 2 daily) for 2 weeks. Having done a little research, I requested another 4 weeks of doxy - which, thankfully, my doctor prescribed for me. The EM rash became bigger and even more red and angry and itchy - so I also had erythromycin (250mg x 4 daily) for 1 week.
The EM rash is almost gone now - I took photos to show any future doctors.

I am having severe headaches every couple of days - really bad ones which painkillers don't have any effect on at all. At night sometimes I get a scary 'electric shock' like pains to my heart just before I am about to fall asleep - this happened all night one night, so I didn't actually sleep at all! I was really terrified that I was going to have a heart attack.

I have a constant slight sore throat. And today I have pins and needles in my legs and feet (2 hours now).

The doctors have not tested for co-infections even though I asked them to. ANd the first blood test has come back negative for Lyme.

My doctor has never seen anyone with Lyme before - apparently it is very rare in this part of England (yet I caught it in my garden!!!)

Does anyone have any similar symptoms?
Can you recommend what I should be asking my doctor for in terms of medicine?
Should the doxycycline be working now?
Is it normal for symptoms to be worsening on doxycycline? (I have almost 3 weeks of Doxy left to take).

I would appreciate any helpful advice.

 
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Old 12-21-2011, 06:32 AM   #2
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Join Date: Dec 2011
Location: Richmond, KY
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Guessing HB User
Re: any help and advice would be appreciated

Hi -

I'm not sure about England but in the States, doctors are quick to say you do not have Lyme if you get the disease in a (rare) state. I live in Kentucky and have been told by many doctors and local CDC people that I do not have Lyme Disease because "you just can't get it in Kentucky". Even though three blood tests have come back positive for Lyme Disease. Unfortunately, I think this biased exists far too often.

Listen to your body. If you feel you are not responding well, ask your doctor to run tests for co-infections. I printed research material and dropped it off for my doctor to read prior to my scheduled appointment.

I wish you luck in your treatment.

 
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Jacuetta (12-21-2011)
Old 12-21-2011, 11:31 AM   #3
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Join Date: Dec 2011
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Jacuetta HB User
Re: any help and advice would be appreciated

Hello Guessing,

Thank you so much for replying to my post.

I think my doctor is willing to accept that I have Lyme because the rash was so typical of a bulls-eye rash, and I had found a hedgehog just a week before the bite appeared - which often carry nasty ticks (I didn't know that at the time though!)

I have been referred to an Infectious Diseases doctor too - and await the results of blood tests from there.... though that doctor didn't seem overly concerned as the bite was fading. Though I wish I wasn't, I am quite SURE I have Lyme from my symptoms - which now include pins and needles to legs and feet - worryingly.

Today I have been back to my doctor - who is really nice and was willing to read the information I took with me. Now I have have been prescribed some stronger antibiotics (tetracycline 500mg x 4 daily) - so I hope I can tolerate them, and pray they work. I also mentioned co-infections again and hope they will agree to test for them soon.

I have read a lot on the internet about how difficult it is for Lyme to be diagnosed - I think this is dreadful - it just adds to the stress when you are already stressed. How can they say which areas have Lyme? Obviously it is spreading all over! I am amazed to have got it from my own garden... no-one here (friends/ family) seems to have heard of it - and doctor and vet tell me it is really rare.

I will keep reading and researching for the best advice - I have sent for a couple of books.

I wish you success with your treatment and hope your doctor listens to you and prescribes you the right medicines.

 
Old 12-21-2011, 04:00 PM   #4
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Join Date: Aug 2010
Location: United Kingdom
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littlehutton HB Userlittlehutton HB Userlittlehutton HB User
Re: any help and advice would be appreciated

Jacuetta

Hi, I am in the UK and have Lyme Disease, it really is not as rare as we are lead to believe!

Really you need to see a doctor skilled in treating Lyme Disease of
which there are none working within the NHS - in general NHS doctors follow the
HPA/IDSA restricted guidelines for treatment of lyme and although they may recognise a case of acute Lyme Disease (in your case), if that is overlooked or under treated it can eventually become a chronic illness.

You will likely get fobbed off by the infectious disease doctor - who have it in their heads that negative test results will exclude Lyme, when in reality the likelyhood of testing postive from a blood test is zero. Research shows they miss about 50% of cases.
Sadly Infectious Disease Doctors in general also follow the HPA/IDSA guidelines and even when they do get a case testing positive for Lyme, will still only offer a short course of antibiotics - which often is not adequate even in the earlier stages of Lyme.

You may want to have a look at the Burrascano Guidelines, which you can show to your GP and highlight what relates to you - however most GP's will not want to treat differently from the recommended HPA/IDSA guidelines. If this is the case you may need to find a private doctor experienced with treating Lyme (an LLMD). There are one or two in the UK. You might wish to contact B.A.D.A-UK, a lyme charity who can put you in touch with a doctor.

Good Luck

 
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Jacuetta (12-22-2011)
Old 12-21-2011, 04:02 PM   #5
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Join Date: Aug 2010
Location: United Kingdom
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littlehutton HB Userlittlehutton HB Userlittlehutton HB User
Re: any help and advice would be appreciated

Jacuetta

Hi, I am in the UK and have Lyme Disease, it really is not as rare as we are lead to believe!

Really you need to see a doctor skilled in treating Lyme Disease of
which there are none working within the NHS - in general NHS doctors follow the
HPA/IDSA restricted guidelines for treatment of lyme and although they may recognise a case of acute Lyme Disease (in your case), if that is overlooked or under treated it can eventually become a chronic illness.

You will likely get fobbed off by the infectious disease doctor - who have it in their heads that negative test results will exclude Lyme, when in reality the likelyhood of testing postive from a blood test is zero. Research shows they miss about 50% of cases.
Sadly Infectious Disease Doctors in general also follow the HPA/IDSA guidelines and even when they do get a case testing positive for Lyme, will still only offer a short course of antibiotics - which often is not adequate even in the earlier stages of Lyme.

You may want to have a look at the Burrascano Guidelines, which you can show to your GP and highlight what relates to you - however most GP's will not want to treat differently from the recommended HPA/IDSA guidelines. If this is the case you may need to find a private doctor experienced with treating Lyme (an LLMD). There are one or two in the UK. You might wish to contact B.A.D.A-UK, a lyme charity who can put you in touch with a doctor.

Good Luck

 
Old 12-22-2011, 04:06 AM   #6
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Join Date: Dec 2011
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Jacuetta HB User
Re: any help and advice would be appreciated

Littlehutton,

Thank you very much for your advice.

I really hope my doctor will give me the right treatment - but am worried that the treatment won't be sufficient, having read so much on the internet about how this disease works. I wanted to be one of those who took 2 weeks of doxycycline and was cured (- if these people really exist!) But I have more symptoms now - which isn't good.

I have tried to look if I can get the testing for Lyme and co-infections done privately in England - but the only place I found is in Hemel Hempstead, which is a good way from here, and I have other problems which make it difficult to travel far.

My doctor does seem willing to listen and read the research I have printed - so I am lucky there, thank goodness.

How are you? You did not say; I hope your treatment has been successful.
Did you go private? Does that mean you no longer see your GP about the Lymes - or do you see both?

I still have the pins and needles - and have an operation tomorrow to take a chip out of a broken elbow!

I will reply to any more posts when I am able - thank you for all advice!

 
Old 12-22-2011, 05:34 AM   #7
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littlehutton HB Userlittlehutton HB Userlittlehutton HB User
Re: any help and advice would be appreciated

Quote:
Originally Posted by Jacuetta View Post
Littlehutton,

Thank you very much for your advice.

I really hope my doctor will give me the right treatment - but am worried that the treatment won't be sufficient, having read so much on the internet about how this disease works. I wanted to be one of those who took 2 weeks of doxycycline and was cured (- if these people really exist!) But I have more symptoms now - which isn't good.

I have tried to look if I can get the testing for Lyme and co-infections done privately in England - but the only place I found is in Hemel Hempstead, which is a good way from here, and I have other problems which make it difficult to travel far.

My doctor does seem willing to listen and read the research I have printed - so I am lucky there, thank goodness.

How are you? You did not say; I hope your treatment has been successful.
Did you go private? Does that mean you no longer see your GP about the Lymes - or do you see both?

I still have the pins and needles - and have an operation tomorrow to take a chip out of a broken elbow!

I will reply to any more posts when I am able - thank you for all advice!


Yes the place in Hemel Hemstead is really the only place at the moment who are actively treating lyme patients, I am a patient there.

There is another doctor in cardiff, but as far as I know he is not taking on any new patients at present, and there was another doctor in Newcastle but he has recently retired, so unfortunately choices are limited.

Unfortunately for me, I was left undiagnosed for almost a year, and had 3 negative lyme tests within the NHS, I was given a short course of antibiotics which were insufficient and now I have chronic Lyme. I have been undergoing treatment for a year at hemel hemstead and have made small improvements, but treatment can be tough and very long once the condition becomes chronic.

I cannot stress enough how important it is to get treatment asap, as this is a multi-system disease which invades our bodily systems and can cause absolute havoc if not treated quickly and effectively.

Hemel Hemstaed may be quite far away from you but in the long run would be well worth your trouble, I will doubt very much that your GP will be able to help however willing he is, unless he has had experience with treating lyme patients before which is usually unlikely.

I don't go and see my GP anymore due to their lack of knowledge re Lyme, and I have changed GP 3 times to no avail!

Even in the early stages of the disease a short course of antibiotics is rarely sufficient, treatment in general should be continued for at least a few months after all symptoms have disappeared. Co infections also need to be addressed, and require different treatment other than doxy. The majority of people with Lyme are nearly always co infected including myself. The NHS do not even test for these co-infections.

Best of luck

 
Old 01-02-2012, 04:35 PM   #8
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Join Date: Dec 2011
Location: South Yorkshire, England
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Jacuetta HB User
Re: any help and advice would be appreciated

Little Hutton,

Thank you again for your advice.

I was in Hospital until Christmas Eve - then caught the hospital stomach bug which was doing the rounds there so I have been feeling very sorry for myself!

Today I have started my new medicine (tetracycline) - which I have read can be very successful if taken for 3 months in early Lyme. I have been prescribed one months worth so far... and hope I am OK on them... and hope to get another 2 months worth prescribed.

Apparently my GP has talked to the infectious diseases doctor, who has suggested that I should stop researching Lyme - which seems odd to me! Anyway I intend to read my books and keep on researching!

Luckily I am feeling quite well today (actually for the first time since I got the bite) - so I am hoping the doxycycline has had some effect. The pins and needles in legs and feet are faintly still there - but very much reduced, which is such a relief.

I have looked at the Burrascano Guidelines - and will print it off as you suggested to highlight points for my doctor if I need to.

I am still wanting to get tested for co-infections - and I will mention them again at my next appointment. But I wonder if there any good tests for co-infections (in England)? I have read so much about how useless all the tests are! I wonder if I could arrange any tests myself - by post maybe?

I am sorry to hear about all your frustrations with the NHS and the difficulty getting diagnosed, and especially that you now have chronic Lyme. At least you are now being treated by the experts at Hemel Hemstead - I do hope you will soon overcome this and be much better.

I will let you know how I get on - keeping fingers crossed for more good days - and sufficient antibiotics for all of us who need them.

 
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