Lyme Clinic in Yorkshire, UK

[maddie]

Hi all 🙂

Just to let you know that I visited a doctor at a Lyme clinic in Yorkshire, UK.

She is a kind lady who specialises in Lyme disease. I’m not sure I have Lyme disease, more likely I have some type of inflammatory/reactive arthritis (not officially diagnosed yet), however, she does provide metronidazole antibiotic treatment, for people with Lyme or related symptoms. The initial Lyme consultation is £120 and then it is £60 for each fortnightly visit. The fortnightly visits go on for about three months, and then you can just visit once a month if you are getting better.

She will not consider prescribing Minocin or Doxycycline. She will only prescribe metronidazole (one tablet of 400 mg three times a day on a Thursday, Friday and Saturday, once a fortnight). She also recommends you take a magnesium supplement, plus probiotics. To be able to take the antibiotics she requests a liver ALT test once every three months.

In addition to the antibiotics, she uses a rife machine for Lyme which she has in her drop-in clinic every Wednesday afternoon. I went there and met some other lovely people. She also recommends the atkins/keto diet.

I’m taking my first metronidazole antibiotics in a fortnight when I go back again.

Best wishes

Maddie

No official diagnosis yet but probably some type sero-negative, symmetrical inflammatory arthritis.
Started AP treatment December 2018. 200mg Minocin MR Mon/Wed/Fri.

[Maz]

Maddie, this is great feedback! Thank you for sharing your experience with this doc as it may help others in England. I’d love to get updates of how you’re doing over time – this protocol isn’t exactly what LLMDs use in the US, but it is very similar to the Arthritis Trust of America Protocol that you might like to read about and share with your new doc.

All the best and please check in with us to share your progress over time. Dr Brown’s basic protocol was to use tetracyclines but it’s often forgotten that he individualized patient AP and used different classes of antibiotics depending on the patient’s infection history and measurable pathogen load. In some cases, for instance, he just used a penicillin if the patient had a strong history of strep or Lyme (as mentioned in book).

[maddie]

Hi Maz

Thanks for responding 🙂

The arthritis trust protocol for inflammatory arthritis was why I went down the metronidazole path. As you say, it isn’t identical but is along the same lines. If that doesn’t work then I will try minocycline from the other clinic in the UK (once or if I get an official diagnosis; they refuse to prescribe it otherwise). I just cannot sit around waiting to see if ‘whatever I have’ gets better.

I will let you know how I get on.

Best wishes and thanks,

Maddie

No official diagnosis yet but probably some type sero-negative, symmetrical inflammatory arthritis.
Started AP treatment December 2018. 200mg Minocin MR Mon/Wed/Fri.

[Maz]

That makes very good sense, Maddie! Thanks for sharing more about Dr. E’s clinics and their refusal to prescribe without official diagnosis. I suppose that makes sense, but I know that it’s very tough sometimes for folks with reactive arthritis to get any kind of diagnosis. Do you think Dr. B would run the HLA B27 test for you? If you have that genetic haplotype that would at least provide solid grounding for a diagnosis. Wishing you well and look forward to updates on how you’re doing on the metronidazole protocol.

[maddie]

Hi Maz

I’m not sure about Dr B, but Dr E would definitely run an HLA B27 test for me.

I will see how I get on with the metronidazole therapy first and take it from there.

Best wishes

Maddie 🙂

No official diagnosis yet but probably some type sero-negative, symmetrical inflammatory arthritis.
Started AP treatment December 2018. 200mg Minocin MR Mon/Wed/Fri.

[JZL]

Maddie, good to know you have a doctor guiding your medications. It’s interesting different doctors have different approach for inflammation treatment. My doctor is not following a classical protocol either. But in general we are using the weapon of antibiotics to treat the inflammatory disease. Hope we are on the right path. Good luck and keep us posted your progress.

[Rosie]

Thank you for the Yorkshire info, Maddie.
I’m currently trying to get the fees for Dr E via email.
I wasn’t sure if Yorkshire clinic was still available as these things seem to change from time to time.
As you know, doctors do change what they do or move to another area etc.

Been on antibiotic therapies for years.
I have been wondering what would be the alternative to Metronidazole which can provide the same action/effects.
Does anybody know if it’s okay to ask? I do not mean to be rude and hijack your thread.

I am on something else, which would not agree with Metronidazole which is a real shame, but so far I have been unable to find an answer. I was thinking of going to see an infectious doctor for obtaining advice for some time, but I have been procrastinating.

Wishing you well.

[Maz]

Hi Rosie,

Would you kindly PM me the contact info for the doc you are currently seeing for antibiotic therapy? Just wondering if we have him/her on our doc lists.

What are you taking currently in terms of antibiotic therapy and supps for your rheumatic disease?

If you want, you can also start a new discussion thread as sometimes posts get buried under unrelated topics.

[maddie]

Thanks, JZL. It is intriguing to see the different types of protocols. I guess it depends upon the doctors’ experiences. As you said, fingers crossed. I hope you start to see improvements soon 🙂

Hi Rosie. Hijack away! I would much rather that we all share our information 🙂 So, are you trying to get Dr E to prescribe you an alternative to metronidazole? I would also be very interested to know of other doctors in the UK that do any antibiotic protocol. They seem few and far between.

Maz – By the way, here are the costs and dosage for the minocyline treatment given by Dr E’s clinic. I emailed them for a quote a few weeks back and this was their response:-

Minocycline is taken initially 100mcg daily 6/7 days for 2 months. If no better, the dose is increased to 100mcg 2 daily for 2-3 months by which time most people are likely to see a response. Costs are (approx) £15-20 per 28 capsules.

That seems like a very reasonable price to me.

Maddie 🙂

No official diagnosis yet but probably some type sero-negative, symmetrical inflammatory arthritis.
Started AP treatment December 2018. 200mg Minocin MR Mon/Wed/Fri.

[maddie]

Good news! Dr E’s clinic in Surrey have agreed to prescribe me Minocin (I specifically asked for Minocin, rather than minocycline) after telling them that I have a probable diagnosis of reactive arthritis.

I am currently taking doxycyline off my own back (without a doctor), so I feel much happier that they have agreed to this.

I’m also going to visit the Lyme clinic on Wednesday to take the pulsed Metronidazole too. Fingers crossed.

Maddie 🙂

No official diagnosis yet but probably some type sero-negative, symmetrical inflammatory arthritis.
Started AP treatment December 2018. 200mg Minocin MR Mon/Wed/Fri.

[JZL]

Maddie, that’s good news! Having a supportive AP doctor is the first step to success. Waiting for more good news coming soon.

[maddie]

Hi all

I took the metronidazole over the weekend from the Lyme Clinic. It made me feel much worse, which I was expecting.

I also have in my hand (just rushed back from the chemist) my first packet of Minocin! I am to take 100mg a day for a few months and then maybe up the dose depending on how I’m doing.

In all honesty, I think I may just stick to the Minocin for now, seeing as I think taking both antibiotics is a bit heavy going. I don’t think I have Lyme anyway, more likely seronegative arthritis.

All the best, and I will keep you updated.

Maddie 🙂

No official diagnosis yet but probably some type sero-negative, symmetrical inflammatory arthritis.
Started AP treatment December 2018. 200mg Minocin MR Mon/Wed/Fri.

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