Sunday, 20 July 2014

Success!!

WWOOOOHOOOO!!!! My appointment with Dr X went really really well. Better than I'd hoped. I am, apparently, 'way ahead of the curve' and 'doing very very well'. I knew the last bit- I FEEL well, but didn't realise I was such a star pupil! well chuffed. 
In Dr X's office after my consultation. 

He's tapering down my treatment to a skeletal antibiotic regimen, including minocycline, which I've not had before. the Mino is apparently for any Chlamydia pneumoniae or mycoplasma which might be lurking. he says it has good tissue and cellular penetration. After a couple of months, I go really skeletal (and I don't mean lose more weight, although with this low histamine, gluten free diet, that is a distinct possibility!) and go to just three days a month antibiotics- mino, rifampicin and septra ds for 10 months.  Woohooo!!! No more purse-busting mepron. he doesn't want to see me back in the office for another year! if anything changes, I am to call the office to discuss, and I know relapses can happen- they've happened to me before, so I'm not counting my chickens just yet.

He says that after 12 months of this skeletal treatment, my immune system should be tipped back into being fully back in charge and I should be 'bullet proof'. The best news is that he said that we could start trying for another baby this year, if we wanted. he said it would be ok, he would treat me throughout the pregnancy with azithromycin and amoxicillin. that reduces the risks to the baby to very small, especially since I am asymptomatic and have been treated for coinfections and biofilm (and I think much more throughly than last time). He supports breastfeeding, thinks it is a good thing, but does treat with azithro and amoxy whilst breastfeeding and recommends probiotic drops for the baby. I asked about risks to John, he says he thinks it is sexually transmitted. he would put john on the same three day a month abx schedule that I'd be on, but would have to see him in person to prescribe that. I will have to discuss with John what he wants to do. I got the feeling Dr X didn't think that in my case, the risks to john were significant, but I'd not want to put him at risk. Dr X says we don't know the size of the risk to partners, and putting the partner on a preventative antibiotic schedule isn't probably ideal, but it's probably better than doing nothing. I agree.

So I'm exceedingly pleased. I'm not out of the woods yet, but I'm close to the edge and I can see blue sky. Our daughter apparently asked John if Dr X had fixed mummy, and did that mean I could go to the woods and up mountains with her now? yes, baby, he has, and it does. Made me cry, she's a wonderful little girl.

I made Dr X a couple of thank-you cards, featuring a photo of kiddo and I up a hill, wearing green and Lyme ribbons, and a green monster that kiddo had made. She'd drawn inside a picture of "mummy's american doctor'. I also wanted to thank him for coming to the UK a couple of months ago to a one day seminar in London. I didn't go, but it was to try to educate our doctors, and apparently, his lecture was excellent. I really hope it has sparked a few of our doctors into being interested in learning more.   

So, what has made my treatment so successful? I think it's a combination of a few factors:
1) I have not gone untreated for a long time before diagnosis and treatment. little permanent damage has occurred. my last ECG was normal, after all of them showing conduction abnormalities, so I think even that has healed. 
2) I have been treated with pulsed, high dose, combination anti biotics and anti malarials/ anti protozoals. ALL of the common coinfections have been targetted.
3) pulsing has allowed for detox and allowed the infections to come out of hiding and cystic forms/tissues/biofilm.
4)supplements and herbals for detox have helped my liver to cope and made the treatment tolerable. I used to think detox was a load of shite, spouted by spa's to get money out of gullible folk. It is, but in the context of Lyme treatment, it's essential. if your liver and kidneys and biochemical pathways aren't functioning, neither can you.
5) sleep management. if you can't sleep, you can't heal. simple. my partner has been an absolute star and has allowed me to sleep in most mornings, which has really really helped. Dr X prescribes things to help you sleep.
6)Biofilm. this is not some half arsed theoretical thing, biofilms are ubiquitous, they are and established medical fact. there's lots of evidence that biofilms are extremely important in Lyme and co, and tackling them is essential to getting at most of the bugs. Dr X's has a very effective biofilm protocol.
7)Support from my family and partner. Financially and emotionally, this has been absolutely key.  If I'd been on my own with this, I'd not have been able to do it at all. I owe them the world and I love them to bits. It's incredibly hard, seeing a loved one go through all of this, and they've been there with me on this rather torturous journey.

My Dr isn't for everyone. I think really fragile patients would probably do better with a gentler approach. if you can't tolerate antibiotics, go elsewhere as he really doesn't use many herbals. if you have a lot of issues with mould, find another doctor. however, for me, he's been brilliant.

The journey isn't over yet, but the biggest bit is done and I feel like I can, at last, live a normal life.


6 comments:

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    1. Bravo and thank goodness for doctors like yours. I first met you at a Lyme Disease Action conference when you were much recovered from lyme the first time around - I was sorry to hear you relapsed much later and have followed your progress through this blog with great interest.
      Thank you for sharing your journey with us and thank you for all you do and have done in raising the profile of this disease and the denial that leaves so many floundering without even basic help from the NHS.

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  2. Hi there,
    My name is Sophie and I have been dealing with Lyme for close to 2 years now. I just moved to Edinburgh from Canada, and I have been looking around for a LLMD with no luck :( I had a great ND where I lived before that I am still in contact with, but for writing prescriptions, sick notes for uni, a doctor in the area would just be amazing. I was wondering if there was any chance you'd be willing to email me the contact info of any/ all of the doctors that have helped you out? My email is sophettes@gmail.com . I am really in a tight spot right now as the disease just keeps getting worse despite treatment, and I have just begun a fairly demanding program at uni. Thanks so much for your time :)
    -Sophie

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  3. I value your voice Nicola!! Continued Vibrant Blessings to you and your family!
    Heather :-)

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  4. Hi!

    And Im from Kirkcaldy, Fife and also desperately looking for a doctor. Can you recommend me yours? Million thanks, Maria, maria_romanik@yahoo.com

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  5. Great news and v interesting blog! Who is this mysterious Lyme doc? I desperately need help here up in the north of Scotland!

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