ap doctor in uk

[lemons]

Hello, I am new to this forum and therefore probably posting this message in the wrong place or something ? Anyway, I will type my questions and then hope for the best !! I was diagnosed with sero neg rheumatoid arthritis in June , it came on practically overnight. I am in a state of utter shock and keep thinking Im going to wake up from this nightmare. It has been the hottest summer in the UK for years and I have spent most of it in bed, with my laptop learning about a disease I knew nothing about. I have seen my rheumatologist and have been prescribed panquenil , he said it was one of the milder DMARDS as he was made quite aware that I was not willing to take methotextrate. He implied on my next visit we would discuss the next drug to be added. I don’t want another drug to be added, I don’t want to be taking this one with its possible effects on the eyes. So I found this site, I bought the book “The new arthritis breakthrough” and have read it from cover to cover and I now need to find a doctor who uses the AP method in England. Are there any ? I know of the Breakspear hospital but they are incredibly expensive and Im not even sure if they do it. If anyone can help It would be much appreciated.

[Maz]

@lemons wrote:

I now need to find a doctor who uses the AP method in England. Are there any ? I know of the Breakspear hospital but they are incredibly expensive and Im not even sure if they do it. If anyone can help It would be much appreciated.

Hi Lemons,

Unfortunately, the Hemel Hempstead Clinic is the only clinic we have listed for UK presently and we’re not sure if they will use AP or not at this point, as it seems they are focused more on alternative treatments…not necessarily a bad thing in terms of helping the immune system get back on track, too, but not such a great thing if you are paying a high price out of pocket, need to travel some distance to get there, and it’s not even clear if they will prescribe the treatment or not. A couple years ago, there was a great rheumy there who believed in infectious causes and used a wide spectrum of abx, but he moved practice and then went into full retirement. 🙁 From what I understand, the alternative practitioners there aren’t quite on the same page as the rheumy had been, though there are a few folks here who do go to that clinic who may be able to enlighten us further as to what approach they are taking now.

There is one doctor in Surrey who contacted the foundation a year or so ago for info on mycoplasma testing for one of her patients. We are not clear if this doc is using AP or not, but it may be worth your while to check at this clinic and with this particular lady doc to ask. We haven’t put her on our referral list, formally, because after sending her info on testing and asking if we could add her, we never heard back again. 🙁 If you like, I’d be happy to send this doc’s contact info so you could at least check. I believe that, like Breakspear, this doc is an alternative/holistic doc and would also be out of pocket, but she may work out if nearer to you?

If you send me an email and let me know who you are, I’d be happy to send her website info to you. She seemed very open in her communications with the foundation and may be a good doc to work with, but we haven’t yet had any feedback on her from a patient perspective.

Alternatively, you could just ask your rheumy to prescribe minocycline as a “DMARD” for your RA. As you’re already taking plaquenil, it would actually make a nice adjunctive treatment and, once stable on AP, you might be able to wean off the plaquenil. Most rheumies don’t like prescribing minocycline as they consider it a “weak DMARD” at best, but they don’t quite understand that RAers generally experience an early worsening period – the “herx” – so they think it isn’t working….when, in fact, it’s probably working too well at the high daily doses they usually prescribe. In any case, there is no reason why any rheumy shouldn’t be willing to at least trial minocycline, because there are plenty of studies showing that it works well in the longer term for RA. The American College of Rheumatology has approved it as a DMARD for RA, so you could actually print the following page off and say you’d like to add this to your plaquenil:

http://www.rheumatology.org/practice/clinical/patients/medications/minocycline.asp

To further strengthen your case, a British researcher, M.H.Q. Adwan (Wycombe Hospital,
High Wycombe), presented on this treatment to the American College of Rheumatology at the Annual Scientific Meeting in 2009, and provided a lengthy statement as to the efficacy of using tetracyclines for RA and all the disease-modifying properties of this class of abx that are so beneficial. So, if the rheumy does not agree with the American approval of minocycline for RA, there is this British research to also back you up:

http://www.blackwellpublishing.com/acrmeeting/abstract.asp?MeetingID=761&id=80039

“Adwan, M. H. Q.; Tetracycline Antibiotics for Treating Rheumatoid Arthritis: A Systematic Review and Meta-Analysis [abstract]. Arthritis Rheum 2009;60 Suppl 10 :406
DOI: 10.1002/art.25489″

Additionally, there were two studies run out of Charing Cross Hosp in recent years. Although the follow-up study was less that encouraging, the researchers actually comment that the treatment may have been more effective had they used minocycline instead of the older tetracycline:

http://www.ncbi.nlm.nih.gov/pubmed/16465651

http://www.hindawi.com/journals/ijr/2011/585497/

There is also a good deal of patient advocacy material on the main site, including info on how to approach your doctor in asking for the treatment:

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/88.html

Hope this helps in enlisting your rheumy to allow you to try minocycline, Lemons. Feel free to email me and let me know if you’d also like to contact the other doc in Surrey to ask if she would be willing to help you

Wishing you all the best and a warm welcome to you! You posted in just the right spot here on the forum, too…so well done! 🙂

[lemons]

Dear Maz, thankyou so much for replying to my questions and supplying all the info. I want to email you but haven’t the faintest idea how to do it on this site,im not great on computers so you are dealing with a bit of an idiot !! I did however manage to work out how to read your RA story and its so similar to my own ( one equivocal Elisa and one negative Weston blot), one month of doxy and terrible herxing with hands and feet ballooning. Lyme ruled out due to my reaction and diagnosed with ra. When I mentioned the lyme to my rheumatologist he was very snappy and said if I had had it, the doxy would’ve cleared it. Well, as Im going to have to be dealing with this man for sometime I just kept quiet and nodded. I find him a bit scary. As for Breakspear , I know a couple of people who have been there and I get the impression its, for want of a better word “a bit herbal” now. But I will ring them today and ask for info. The thought of going on the ra meds is making me feel panicky and adding to the depression of dealing with the illness. Once I have mastered how to email you, I am very interested in contacting this lady doctor in Surrey. Kind Regards, Lemons x.

[lemons]

Dear Maz, I think I have found the ap doctor. The clinic has sent me an email with an attatched form to send back.Lady on phone said once they have received it, they can decide if I am a suitable candidate for erythromycin treatment. Fingers crossed (if I could !!). Lemons X

[Maz]

Hi Lemons,

Now that you’ve posted 3 times, you should be able to pick up and send PMs (private messages) on this forum, so I’ll send you one with the link to the clinic in Surrey. To retrieve it, just click up top, beside where it says “User Control Panel” and click on (1 new message).

I’m not sure what doctor you mean who will provide erythromycin therapy? While it is one type of abx that may be used, tetracyclines, like doxycycline or minocycline are the ones usually used for RA as a core therapy (then others can be added, if needed). If you do find this doc is AP and/or Lyme Literate, we would love to add them to our referral list, as UK just lost our most experienced AP doc who was in Guildford, Surrey, to retirement. 🙁

Sadly, for UKers, there are no LLMDs of which we are aware (except for the clinic in Hemel Hempstead, though they may now be more ‘herbal’ and not use abx as much anymore). So, if you suspect Lyme and other tickborne diseases, I’d suggest contacting the Tickborne Diseases Alliance and sending them an email to ask if they have any LLMDs in UK now. There was an ILADs physician conference in London a couple summers ago and they may now know of some doctors who are willing to diagnose and treat chronic Lyme of whom we are yet unaware. Or, they may be able to guide you to the best/most trusted source of such info in UK.

http://tbdalliance.org/diagnosing-tbds/find-a-medical-professional

If you would be so kind, if you could either PM me or send me feedback on any doc you locate to help you to my email at maz@roadback.org , we’d be so grateful – thanks! RBF’s physician lists are peer-maintained by the volunteers, so unless we receive feedback from the patients who see these docs, we may not have the most current info to supply to others. 😉

[Rosey UK]

Hi Lemons,
It’s not a nice place where you are at we all know the feeling, It’s very devastating and confusing. I had sero negative RA when I was first diagnosed but now I have the RFactor.
Any way it’s great that you’ve found RB so early, I wish I had. Your GP will give you mynocycline if you take the physicians papers from the roadback print offs. You will need to educate him though. Don’t stop at the first GP, ask another until someone says yes.
I live in the UK, I live in Poole Dorset. I’m from the north though. We are retired and so we moved here.
There is a private doctor in Guildford Surrey. He will give Clyndymycine IVs, but you don’t need them. New people with early diagnosis usually get well very quickly on the antibiotics.
I wish you well and keep us updated.
Rosemary.
I actually had appointments with the Surry doc myself I had the IVs until I became allergic then couldn’t have anymore.

[Maz]

@Rosey UK wrote:

There is a private doctor in Guildford Surrey. He will give Clyndymycine IVs, but you don’t need them. New people with early diagnosis usually get well very quickly on the antibiotics.
I wish you well and keep us updated.
Rosemary.

Hi Rosemary,

Dr. H., in Guildford, went into retirement in January, unfortunately, so it was a different doc above that is about 20 mins from his office in Surrey that may/may not provide AP. 😉

Dr. Brown would often start patients off on IV clindamycin and there is a rationale for doing this…it seems to clear the way of other pathogens that may impede progress on oral tetracyclines.

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/118.html

“Combination Therapy

Antibiotic therapy, particularly with the patient new to this protocol, is frequently a combination of a tetracycline derivative (or erythromycin) and Clindamycin with a combination of routes of administration; e.g.. oral/LV; oral/IM. The most effective combination is an oral tetracycline derivative with IV clindamycin.

When there is an indication of an elevated ASO titre, ampicillin or amoxicillin (usually oral) is added until the titre is negative. Even low titres can cause an exacerbation of the rheumatic disease.”

You’re right, though…in many cases, when disease is early and mild, orals alone seem to be enough. The trouble with Lyme (if Lemons does indeed have Lyme) is that treatment can be quite complex, so working with a LLMD can make a huge difference. I’m just hoping that one of the Lyme advocacy groups may have a listing or two for Lemons in UK, if that is the case.

[lemons]

Dear Rosie uk, thankyou for your message. I don’t think I have lyme desease I was just insistent that my GP gave me doxy as a precaution, due the fact I live in an area heavily populated with deer and have a dog. I have spoken frequently on the telephone with a lady called Denise Longman whos life has been ruined with lyme, just wanted to rule that one out ! Next week I have an appointment with rheumatologist and I know he is going to hard sell the next lot of horrible drugs and I don’t know what to do. I have no intention of taking them, at least not until I have been to (hopefully) AP doctor. I don’t want to upset him again, as I seem to be quite good at that judging from my last two visits. Is it normal to dread going? Thanks for listening, Lemons x

[Rosey UK]

Hi, Lemons,
Don’t worry about upsetting the rheumatologist, I’ve upset them for years, they know now how I feel about their drugs.
You have a right to find the best path that you’re comfortable with. I know they want to get you on methatextrate ASAP and possibly another drug combined, because they’ve found the quicker they start treating early RA the quicker its under control. However like you I was always frightened of them. I’m taking plaquinel and prednisolone, but I’m anxious to get back on mynocycline. I know Maz is concerned that you could have Lyme because so many here do have, and like Maz says it can be quite complex to treat. However it’s difficult for us in the uk to get tested. I asked my GP once and he said no because the test isn’t reliable, it could be negative when its positive and visa versa.
Please talk to your GP and tell him what you’ve learned about the AP.
Rosemary
PS what part of England are you Lemons?

[Joanne60]

Lemons – How can you be so sure you do not have Lyme Disease? there is no test that can rule it out and NHS tests only are based on one strain the B 31 plus a couple of bands for European species. There are over 100 strains of Borrelia in USA and more than 300 in Europe so without good tests your results mean little and NHS doctors and Rheumatologist haven’t a clue where Lyme is concerned.

Denise will have given you good advice but there is a lot to learn.

You say you had a herx on doxy well any reaction on antibiotics good or bad is an indicator it could be lyme.

I live in Surrey and have been given good support from my GP and recently after a relapse was prescribed Plaquenil by Rheumy to take with clarithromycin which GP prescribes and which I have found very helpful.

My story is long with many mis diagnosis along the way but when eventually I was treated on long term antibiotics for lyme I started to slowly recover my health and life.

I don’t know if you use Facebook but there is a Lyme DiseaseUK group which is very useful. Also Eurolyme forum and information on Lyme Disease Action.

Doctors really do not know enough about Lyme Disease – but once they start to consider as a differential diagnosis they then start finding more cases. Where I live by the woods there are 4 of us infected within 200 meters that I know about the other three were infected in their gardens. But there are many cases now in this area of Guildford although HPA/PHE would not consider it endemic for Lyme.

I have just been listening again to Bill Costerton’s video on Bio films ‘Biofilms do not like DC current or ultra sound’ – 10.38 in on this fascinating video. – ’14 million people in the US per year are affected by Biofilm infections yet mostly these people are treated as if they were Planktonic infections. If we can make the switch – paradigm shift completely then we can get better treatment for a huge number of bacterial infections. The worst thing if we continue to treat infections as planktonic is that we will mis diagnose that is we will treat inflammation when it really is a bacterial infection’
http://www.youtube.com/watch?v=M_DWNFFgHbE

Dr Brown thought inflammation was a response to a bacterial infection all those years ago his vimeo on this forum is way ahead of his time and even now it will be years before we have this much needed paradigm shift from Plankonic to Biofilm concepts.

If you want to read my story it is on my blog which I think shows at the bottom of this post.

Good luck in finding the underlying cause of your symptoms and treating that and not just the Rheumy’s usual way of suppressing your symptoms and allowing the underlying cause to go un treated.

It is possible to get private testing that better supports a Lyme diagnosis I used IgeneX in California but others use Breakspear and many are preferring to go to BCA clinic in Germany using Infectolabs for direct testing. There is a clinic now in Netherlands that will take blood for culture of Borrelia. But there are other infections Mycoplasma, Chlamydia Pneumonia nd more recently Bartonella is proving to be a big player but just don’t think the nHS will help.

[Rosey UK]

Hi Maz,
Didn’t know the doc in Surrey had retired, but its good that someone’s taken over not too far away.
I ordered the Road Back book, obviously have the other two but wanted that one as well.
I started to read it and my hubby said read it to me, we were in the garden. Later after I stopped reading, he picked it up himselve and couldn’t put it down.
He feels very angry that the doctor said to see how the plaquinel goes first as together they can cause liver probs.
I’m just going to wait until I’ve had a srew removed from my foot next week. It was inserted when I had one of my foot operations to keep things together, but it rubs on my shoes. Especially because I can actually ware shoes now lol. Although I can’t walk far, they look nice when on my scooter or wheelchair he,he.
Thanks Maz for the links and info, and for all the support and knowledge you give to everyone! Very grateful.
Rosemary

[lemons]

Hi Joanne60, thankyou for your message. As I said in my post I don’t think I have lyme but I don’t know for sure. My elisa test was equivocal so I then had the Weston blot that came back negative. Denise advised me that I should get a print out of these tests from my doctors and I will get these on Friday .Back in June I was so convinced it was lyme that I ordered three months worth of doxy as back up to the four weeks worth I got from my g.p. I seemed to know more about lyme than the doctors and they were so patronising at the surgery, they made me feel like a neurotic freak. I even phoned my vets for advice and was informed that if I had a tic on me for any amount of time I would know about it. I explained that if the tic was in nymph form it would be tiny not like the huge grey bloated adult sized ones I have removed from my dog in the past. They then said it would be almost unheard of to contract lyme in this area, as it was more prevalent in Scotland,Dorset,Thetford Forest …..I live in rural Bedfordshire, apparantly the deer here don’t do lyme 😆 Anyway the doctor and rheumatologist have both ruled out lyme as I had the negative Weston blot and a months worth of antibiotics.The only thing that makes me more inclined to think it is RA is the presence of the synovial lumps that I have developed on the back of my hands, are these exclusive to RA ?

[Maz]

@lemons wrote:

The only thing that makes me more inclined to think it is RA is the presence of the synovial lumps that I have developed on the back of my hands, are these exclusive to RA ?

Hi Lemons,

A lot of misinformation is purveyed by doctors about Lyme and its persistence. The Envita video below is very simplified, but it shows how Lyme activates the immune system to trigger what appears to be “autoimmunity” or self-attack. In fact, it is “self-attack,” but this is because the infections are so well hidden from immune detection that our own tissues become the collateral damage. So, as my first LLMD explained, it’s not Lyme or RA, it’s both, but once the infections are adequately treated, the self-attack begins to recede and diminish. Lyme is multi-systemic, drills anywhere it can in the body and can look like and trigger many diseases. It is the infections that cause the inflammation and, hence the tissue damage we experience, whether it is neurologic, rheumatologic, endocrinal, and/or organ-specific (brain, heart, lungs, liver, spleen, bladder, kidneys, etc). When I first got Lyme and then RA, my liver became quite badly infected. I didn’t realize until I looked back on my earliest labs with my LLMD. It made me realize even more just how brave these docs are to treat us…had I gone to a conventional doc, I’m highly doubtful I would have been put on abx with my liver enzymes so elevated! As it turned out, within a month or two, my liver enzymes had normalized on high dose abx combinations. I can’t say this would be the case for everyone, but in my case, my doctor clearly knew what he was doing and I credit him with saving my life, as I was so ill. I would struggle in pain to get out of a chair, inch my way across the room, as each movement sent shooting pain throughout my joints and muscles, but when I got to the next room, couldn’t even remember why I got up to go there in the first place.

http://www.envita.com/conditions-we-treat/lymedisease

The video is more simplistic than what actually happens and doesn’t discuss persistence in terms of borrelial pleomorphisms (its different forms – dormant cyst, blebs, cell-wall deficient forms, and cell-walled spiral form), it’s different strains (some more virulent than others), and that it also hides in biofilm colonies, but it does explain how the antigenic substances of borrlial proteins activate host immune response and how difficult it is for the immune system to locate this tricky, deeply buried, hidden infection in easy to understand lay terms and why this looks, to all intents and purposes, like “auto-immunity”:

Here are some excellent resources on Lyme, in case you haven’t seen them and if interested:

Pam Weintraub, Discover Magazine editor’s book on Lyme: http://www.cureunknown.com

Under Our Skin movie documentary to watch for free: http://www.hulu.com/watch/268761

ILADs and Dr. B’s Diagnostic and Treatment Guidelines:

http://www.ilads.org/lyme_disease/treatment_guidelines.html

It is terribly hard for UKers to get adequate treatment if they do have Lyme disease and other TBDs (tickborne diseases) and some have to fly to the US to see LLMDs to get diagnosed and started on proper treatments. The two LLMDs of whom RBF was aware (one in Wales and one in Hemel Hempstead) who were in practice in the UK a few years ago have now been hounded out of practice or forced into early retirement. 🙁 If you do believe you have Lyme, as Joanne mentioned, EuroLyme may be a good resource to locate a decent LLMD in Europe to get treatment.

Lemons, did you receive the PM I sent you that I mentioned in my post above? If so, was it the same doc you were checking into who used “erythromycin therapy” or a different one? Thanks!

[Joanne60]

Hi Lemons

I had synovial thickening on my back of hands around the wrists – at that time I could not flex my wrists fully and they were painful and weak, that was just one of my many symptoms and it lasted about two years. The synovial thickening pain and weakness all went eventually and only then did I realize I had something similar around my Achilles tendons that one physio had said would be permanent – it caused me to walk like a wooden soldier. This thickening around my ankle was so similar to what i had on my wrists I suggested to my LLMD that it was something similar – he didn’t disagree and he was always one to point out anything I said that was not correct although hesitant to confirm things that were controversial in connection with Lyme here in UK.

Maz explains things well with Lyme she had a good Lyme Doctor one of the best, we do not have any of that caliber in the UK the few we had were reported to GMC for using unorthodox tests ( ie not the NHS rubbish tests) One retired anyway and the other no longer treats Lyme patients. The GMC decided that the doctors didn’t have a case to answer and so there were no hearings, GMC said it was not their remit to get involved in a controversial area of medicine.

Vets in UK are no better informed than doctors and consultants seem the worst. One vet recently told her neighbour who had a positive western blot on NHS plus tick bite and a bulls eye rash ( diagnostic for Lyme) and lived in an area in Fife endemic for Lyme that she could not have Lyme as it was not in the UK. My local vet didn’t even know what test would be used and had to ring the lab but as they only use an ELISA I am guessing the test is not very accurate anyway.

Interesting Faith Smith Bristol university did some research using dogs as sentinels and recruited many vet practices into helping- her results showed that Borrelia was more prevalent than previously thought.

As to size of ticks you already realise the nymphal tick can frequently go un noticed but most doctors would only recognise a baked bean sized fully engorged tick. I pulled these off our dogs for 30 years never realizing we had Lyme Disease in the UK nor removing them properly. Where our dogs go to collect ticks is where we also go so we are very much at risk.

Willy Burgdorfer who identified the Borrelia spirochete that causes Lyme Disease found that in 10% of infected ticks they had a systemic infection- this means that there is no safe window – currently often quoted as 24hours before infection occurs. The saliva can contain Borrelia and the tick saliva is the first thing injected into us.

There have been a new European species of tick found in south east England and recent research showing some are infected with Ricketsia so everything in UK about Tick borne diseases is still in it’s infancy we just do not know the true extent of the problem but doctors remain very much in ignorance so it is down to the patients to read as much as possible about this emerging problem.

Joanne

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