doctor required for treatment in UK

Hi
I spend a lot of time in Argentina as a wildlife conservationist in the S. Hemisphere summer then spend the N.Hemisphere summers in the UK.  I have had classic second stage Lyme symptoms since early May (4 months) although I did not get the bullseye or notice any ticks on myself.  My doctor said she thought I was getting older and did no diagnostic tests so I went for a second opinion a month later having learnt about Lyme.  This doctor did think that there was a small possiblity I may have Lyme and put me on a 4 weeks course of 200mg Doxycycline per day as well as taking blood for testing.
I took the Doxycycline for 2 weeks then stopped after receiving an email from the doctor saying that my blood results were clear.  2 days later he emailed me back to say that I had the Lyme antibodies in my blood so I restarted the course.  My headache disappeared whilst on the course but the muscular pain persisted.
After finishing the course the symptoms gradually became worse and my joints became painful, particularly the knees.  Some mornings I would wake up and not be able to walk as my heels were so painful.  In mid July I started to become fatigued and my energy levels became very low.  I went back to doctor no 1 and she took a lot of blood for testing.
Prior to the start of the symptoms I was extremely fit doing about 6-7 hours of vigorous exercise each week including circuit training, weights, swim training, tennis, boxing.  Now, 4 months after the symptoms started, I can just about manage one swim training session every other day.  I am an ex national amateur triathlete.
I persisted with my 2 doctors and eventually they sent me to a nephrologist because they had a lot of faith in this man's detective powers.
The nephrologist took yet more blood tests (6 phials) and gave me a thorough physical and asked some very pertinent questions.  As by that stage I had had 2 positive antibody tests for Lyme he diagnosed me with it but decided to withold treatment until he had his blood results.  These tests can take 4-6 weeks as there is only one place in the UK that specialses in tropical diseases.  After a week at home getting worse I went back to the nephrologist and insisted on treatment.  He put me on a 3 week course of 200mg Doxycycline per day which is exactly what I had in June but this was for an even shorter period.  He said if the symptoms persist he would put me on steroids.  I have since learnt from this website that this is completely contraindicated in Lyme.
My energy levels came back almost as soon as I started this new course, the headaches went away and the joint pain abated a little for the first week.  Unfortunately I have suffered this past week and all the pain is back but my energy levels are better than a month ago.
I fear that doctors in the UK are not clued up with Lyme disease as we do not have these ticks here.  
Can anyone recommend a doctor in the UK who has had experience with Lyme?
Thanks and sorry this was so long
Miranda
I am getting desperate as I have 10 days left of this antibiotic course and if there is any improvement then I am sure it will disappear as soon as I stop the course.  I do not wish to have permanant joint problems.

[patsy10]

There are others here from the UK that will hopefully come along and help you find a doctor.

Your blood tests are positive and your doctors have diagnosed you with lyme.  Lyme is hard to treat and it can take months of antibiotics for recovery.

Why were you sent to a nephrologist (kidney doctor) for lyme??

You may want to print copies of treatment guidelines and take them to your doctors.  

[JackieCalifornia]

Miranda, welcome to MedHelp.  You present your situation very clearly, which should aid in getting appropriate diagnosis and treatment.  You are caught in the same situation as many of us:  lack of diagnosis, followed by diagnosis with inadequate treatment, followed by figuring out how to manage this ourselves.

There are other posters here (gorbybelle? are you listening?) in the UK, and I hope they will see your post and respond.  Medical ignorance of Lyme is widespread in the US too, so you are facing the same issues we are.  

There was also a man who posted here a while back who had been in South America as you were -- you may be able to search the archives here and locate him for advice on how the SoAmerican disease strains vary from the UK.  The European strains of Borrelia are apparently different from the US strains, of which there are well more than 100 (I think the number is about 300, but don't want to say without confirmation), and the tests don't begin to pick them all up.

A website for the organization called International Lyme and Associated Disease Society [ILADS] is located at www [dot] ilads [dot] org.  ILADS is the more open-minded group of MDs about Lyme and its coinfections (bartonella, Babesiosis, ehrlichiosis, etc).  They also have European members and affiliations, I believe.  One of the pioneers in Lyme is Dr Joseph Burrascano, and his guidelines for treatment are posted on the ILADS website.  They are extensive, and so a bit disheartening that there is no quick fix -- but it's a good place to start as you are looking for an MD.

The ILADS website also has a referral function to LLMDs (who are regular MDs taking a progressive view of Lyme diagnosis and treatment; it's not a formal title).  

I expect you'll hear from others who see your post.  It sounds like you are doing all you can to be proactive, and I would encourage you to keep plowing ahead.  Let us know if you need additional information, and how you are doing.

[JackieCalifornia]

Another thought:  don't feel desperate about the prescription ending -- I felt the same way in somewhat different circumstances -- but Lyme is odd in that it seems you can stop treatment and come back later and try again to eradicate it, without permanent harm.  Someone may want to contradict me on this point, but it seems that as Lyme may be chronic in some people (that is, low level, not eradicated), those with more active cases can see the Lyme recede into something semi-manageable, with flare ups now and again.

I hesitate to make this comments, because I have been one of those absolutely determined to make a full cure, but recently have begun to think I may need to accept that a full cure is not achievable for me, and maintenance is the answer.  I hope not, and I am not giving up, but also wanted to encourage you not to believe that all is lost when your doxy runs out.  (Also, doxy is only one of many medications used for Lyme these days.)

Hold fast.  Keep heart.  Anxiety is part of Lyme also, so part of what you may be feeling is that -- real fear as well as Lyme anxiety:  both are common.

[margypops]

Just wanted to let you know there is a lot of Lyme disease in England I was bitten In Cornwall 20 years ago, in Deer country so they should be more literate now .Sounds like they have a handle on it for you which is more than I have been able to do here, Good Luck

[Gaucho25]

Hey Miranda! I live in Argentina, I moved here 9 months ago fro  Houston, Texas where I have been having all sorts of weird symptoms (dizzyness, confusion, headaches, eye pain, headaches, visual disturbances, back pain, etc..... and the list goes on). I feel better now but anyway I have been to neurologists in the USa and Argentina and EVERYTHING comes back normal (the results of different tests, I mean). Here in Buenos Aires I asked the neuro to test me for Lyme. They did a IFI method for detecting Antibodies and it came back normal (negative). I attend a clinic called FLENI, it is really good, great professionals, good tehcnology, etc.. According to the different professionals I saw, LYME disease is extremely rare here, but they still do the detection method in the lab... if you, by chance, got the disease here, in one of your visits you may want to get tested in that clinic (not sure if they do that in other hospitals here) because it may be a strain of bacteria that is only endemic of this region, who knows.... may be I have Lyme and the results came back normal because I got the strain somewhere else (Houston)... so when I got to Houston I will demand a doctor to test me for it there... just a though, hope you get better, if you need info from here ask me.
Bye!

[JackieCalifornia]

Gaucho!  What a splendidly timed appearance you have made here.

I was trying so hard to remember your screen name, and there you pop up right on cue!  Thanks much for your advice to mjcollett/Miranda.

I hope you are feeling better and getting things all moving in the right direction.  Let us know if we can help --

Thank you again.  J.

[gorbybelle]

Hi, I have sent you a PM. with details of the llmd. that I have been treated by.

Best Wishes

gorbs

[mjcollett]

Hi Gaucho
An apt name for someone who lives in Argentina.
I am disappointed that more is not known about Lyme in Argentina but not surprised as most of my friends and relatives there have not heard of it.
Your symptoms could be Lyme or could be a number of other things - it is so difficult to diagnose as everyone seems to have varying symptoms.
Anyway, good luck with the diagnosis.  At least I have had 2 positive Borrelia blood tests so there is a bit more chance that I would be diagnosed correctly.
Miranda

[Gaucho25]

Miranda, yep all the doctors know about Lyme here is thru the books, not real life... in fact, one neuro-ophtalmologist here said she has seen only ONE person with Lyme in Argentina who got sick in the USA... so it wasnt from here...
I got diagnosed with migraine with aura, and MS got ruled put with a series of tests (MRIs, evoke dpotentials, etc), so who knows...may be its chronic migraines with aura... we will see... with Lyme if it isnt treated the tendency s to get worse overtime right???  Because its  not really my case... its so odd.