UK- GP's and Lyme detection....Fed Up!

Also another thing is you have Bartonella...think it's that..Do you have to have Lymes...I only ask as inremember before all this my dog had really bad fleas and I got bitten to bits...this is when I also firstbhad alopecia happening,,,,she has had ticks before which I presume she got in the deer park....

I just need to make sure I have ammo for testing of some kind....I don't ever remember having a bulls eye rash..

Emma,
There's no need to panic over the tingling in your legs - although it's not the best news, it's not life-threatening or totally disastrous. It could likely mean that the infection has moved into your nervous system. Like I said, not exactly good news, but you are far from being alone in having Neuro-Lyme.

Yes it is possible to only have only Bartonella, but it's more likely that you have more than one tick-borne infection- they like to travel together.

Another thing you should know is about testing - it's just not very reliable, with only about 50% of those who have Lyme will produce a positive test - not only because of what Miki has stated, but also because there are over 300 strains of Lyme world wide, 20 different strains of Bartonella, and so on with the other tick-borne infections. These tests only test for 3 or 4 different strains, so you can see how so many people end up with false negatives.

A knowledgeable LLMD will diagnose these infections clinically - by symptoms, and will begin treatment when the patient on proper treatment accordingly,

Hi Emma,

I have been recieving treatment on the NHS in collaboration with a private consultant. The consultant gave my diagnosis and treatment plan, and I have been getting the medication via my GP which means your exemption would make it free. Unfortunatly my consultant has just retired, but I might be able to offer some other advice with tackling the NHS. I'm also pretty much the same age (29), so you are welcome to email me if you want (email address in my profile).

Cheers,

Kirsty

Kirsty - Looks like we're in the same boat although you are further down the line than I! - How are you doing these days? I was diagnosed by Dr. D at the end of last year and am just reaching the end of the 3 months doxy and on my way down to BS next week. Wish me luck!

My GP has prescribed according to Dr. Ds guidance - they seem to be fine with it so long as they are being guided by a lyme expert.

Emma - if you look at http://healthguides.mapofmedicine.com/choices/map/lyme_disease1.html it will give you a better understanding of the guidelines the GPs are working to. Note under the management thread the final comment:

In the absence of current consensus between IDSA and ILADS:

longer course (more than 21 days) of antibiotics may be beneficial in some sub-groups of patients, eg Lyme encephalopathy, post-Lyme disease, after consultation with Lyme experts

You must provide your GP with ammunition to treat you by consulting an llmd. Although you will have to pay private consultation fees you will save on meds and monitoring.

Good luck, Hugh!

Post Edited By Moderator (Traveler) : 2/22/2012 9:35:43 AM (GMT-7)

Hmmm... its a tough one, but try this:

- Ask BADA-UK if there are any specialists in your area if you haven't done this already
- Tell GP about your entire set of symptoms in one go, especially anything they can actually measure (it was low body temp that made my GP realise it wasn't just some sort of virus). Book a double appointment if possible. Take along a printed symptom list, with how things have changed over time - keep as simple and short as possible (bullet points?). Avoid mentioning any depression/anxiety related symptoms if possible for now, or the GP might make assumptions....
- Ask for a lyme test from your GP, including Western Blot - be ready to justify tick exposure etc
- Take any other appointments/tests that the GP suggests to exclude other diseases (just in case its not lyme, plus to keep GP on side - you need to suck up a bit)
- The lyme test is likely to take several weeks, ask for a month of Doxy in the interim in case it turns out you have lyme - stress how bad the disease can become if left untreated while awaiting the test results. Make sure your GP is aware the test takes a long time, and it is not safe to wait. Hopefully they will be willing to give you some meds in the meantime - probably just 200mg/day as NHS standard
- If you have lyme you will notice a difference on the meds almost straight away, even such a low dose. I felt like I had been hit by a car for the first few days (pain, shaking, fever), and started feeling a bit better within a week. If you respond to antibiotics you have evidence for the next stage.
- An enlightened GP may make a diagnosis on symptoms and response to antibitiocs alone, if not you may need to go private. Go to a lyme specialist for the diagnosis and recomendation of treatment only, and make sure they know you need to be treated through the NHS. They will write to your GP with diagnosis and medication required, which you can then get on the NHS. This only works if the GP actually refers you there though. Get the name of a specialist and tell the GP that you want to see him/her because you are so ill you don't want to wait for referral to an NHS infectious disease expert (who won't be likely to help, but you might not want to mention that part or you'll look paranoid!!!). The GP can refer you to a private consultant, and then take you back into the NHS system. It happens all the time for other illnesses when people want to jump waiting lists, so it is fine for this too.
- Before you go somewhere private, ask if they ever diagnose based on symptoms alone, or only tests. Tests sent to the USA will possibly not be accepted by the NHS anyway, so don't waste money unnecessarily (I have only had a negative NHS test, well only two bands positive). My constultant diagnosed me through response to antibiotics and symptoms alone. The tests are extortionate and still not very reliable.

Hope that works...

I have always been careful to go to the GP armed with a huge amount of information. I also always kept an open mind, in case it was something else, and took all other tests offered. I don't think my GP is any better than others - when I got my negative test he told me that I couldn't have lyme. I pushed and pushed about the false negatives, but when that didn't work I asked if he would treat me if I got a diagnosis privately. He was happy to do this, and has followed the consultants instructions ever since. He has questioned my meds a lot, and been reluctant to treat for so long, but has had the confidence of a consultant telling him what to do. Basically, if it all went wrong he wouldn't be to blame, which is what you need to find a way to achieve. Protect the GP and they will probably do what you want.

As for my meds I have mainly been on Doxy 400mg/day for the last 1 and a bit years. Also been on Tinidazole for the last five months, and had a short stint on others that didn't suit me in the middle. I have one month of meds left then I have to try coming off them. My last letter from Dr D before he retired was that if I relapse I can get another 3 months worth. My GP will follow this I suspect, but if it takes longer than that I may have a problem...

Fingers crossed...

Good luck everyone!!!

Sorry, xenophile - I had to edit your post; we're not allowed to post doctors' names here!