Tuesday, 17 September 2013

Washington LLMD trip

Not ideal timing - 3 days after I get discharged from hospital for pericarditis, I am winging my way across the atlantic to see my LLMD. It's 10 months since my last visit, so that's not bad (I had two phone consults in between).

My lovely dad is coming with me, thank goodness, I really need him. After the heart trouble, I am needing wheel chaired about. We only have a fairly rubbish, half-broken non self-propelling wheelchair that a kind friend had given us. So my fabby sister buys me a new spangly one off ebay. Trouble is, when she gets it in the car she discovers that it is the wheelchair of weed - it literally honks of dope! Obviously the mannie who sold it to her was something of a toker! He denies this of course and won't take it back. I have visions of the US customs sniffer dog singling me out whilst the customs offcers get their marigold gloves out, so we take the broken chair of doom instead ;-)

The journey was fine - long, but fine. Met up with an old friend who works for an NGO and we chat about anti malarials and how crooked and corrupted the pharmaceutical/medical world is. I'd been reading this book, which I'd really recommend - about how so-called 'evidenced-based' medicine really is anything but....

Anyway.. I digress. LLMD juicy details for the Lyme nerds amoungst you....I'll do a shit sandwich...

The good....very good physical examination, I seem to have no gag reflex left (tongue depressor rammed to back of throat), ataxia seems gone, capillary refill seemed ok, everything else fine.

The bad- his timescales are longer than I'd have hoped for. 6 months and I'll be 'doing very well' and 12 months-2 years more treatment and I'll be 'good to go'. I know he tapers his treatments for quite a long time though, so I should spend quite a long time with 1 week in 4 on antibiotics. He aims for you to have 3 weeks with no bug-killers without relapse for quite some time before trying no killers.

I ask about having another child. He pulls a face and asks how old I am. 39, 40 in February, I say. Ummm... he says.....I ask what treatment he gives for pregnancy, he says amoxicillin and azithromycin, these they know are safe for the bub. Also 1 week in 3 or 4 antibiotics for my partner. He says they don't know if this helps prevent sexual transmission but it's better than doing nothing. I want to be symptom-free before trying for a bub, I can't risk passing it on to John or a little bean, so I'll just have to wait till then...disappointed.

He wants my gallbladder. Yeah, he's a blood thirsty cannibal with a penchant for bile... no, he thinks it'd be in my best interests to have it whipped out. He says it's diseased (and it does blumin' hurt when he prods it) and that inflammation is causing unnecessary stress on an already stressed system. He gives me a letter to take to my GP about it. When I ask if he thinks it's a refuge for the bacteria, he says they used to test patients' removed gallbladders for Lyme and would find it in a PCR. I'd previously resisted the P.A.'s recommendations that I have it out- the ultrasound seemed fine and I quite like having all the body parts I was born with. He says the ultrasounds are not reliable and they usually find a gallbladder that looked fine on an ultrasound will be partly necrotic/very diseased. Ok, I'll try my best to persuade the NHS then......

More good- I've kicked the Babesia! He says he uses the Coartem as a 'challenge' and if you don't react to it (which I didn't) then you've probably got rid of the Babesia! Yey, whoop, holler!!!!:-)

Overall, he says I'm doing well, not there yet, but doing well. He seemed unconcerned about the pericarditis and Coxsackie. He says the best chance I have of kicking the Coxsackie is to treat the Lyme and thus allow my immune system to recover to fight it off myself. He says conventional anti-virals aren't worth taking. I ask about high strength Allicin (which I'd read was strongly anti-viral)- he says he doesn't know about that. To be fair, he's really not the herbal type of doctor, I think I'm on my own with that kind of stuff. I knew all along that I'd ideally have liked a LLMD who incorporated some herbal treatments into their protocols as I thought that that would be useful. However, it's not that simple. It was a case of finding a doctor who it was practical to see (no frequent in-person visits), who wasn't stupidly expensive and who was taking on patients and who didn't have a long long waiting list. I'm pretty happy with everything else that he's done, so I think if I want some herbal additions I can just research them myself. There may come a time when I want to switch doctors, but for now, I'll stick where I am. There are no perfect Lyme doctors, a lot of them are kind of making it up as they go along-  mine included (check your prescriptions people- I found mistakes!).

The really good thing I like about him is that he seems to be on the ball when it comes to looking for new methods of attack, he's not resting on his laurels here. He is putting me on this new protocol which he says physically breaks down the biofilms. He discovered this 'Lactoferrin/Xylitol' protocol when reading work done on wound healing and biofilms. There are several papers which show that the combination of Lactoferrin (which chelates Iron needed in Biofilm formation) and Xylitol (which physically disrupts the biofilm) can help wound healing. He says its really effective in treating Lyme biofilms, and yes, Xylitol is a sweetener and yes, they are both non-prescription. For the first time ever, he says I need to titrate up the doses slowly as they are so potent and cause big herxes. Woo, sounds good stuff.

I'm doing this in combination with my other killers - Lactoferrin/xylitol for 8 days, with ceftin, rifabutin mon, wed, fri and septra DS, daraprim and folinic acid mon-fri and tinidazole thur + fri.  Then I have Ceftin and ciprofoloxacin and folinic acid for 5 days, then 2-3 weeks off, it depends how I feel. Plus my usual bucket loads of various supplements throughout. He says I can drop the nattokinase which he says is a fairly weak biofilm breaker.

We have a good chat about the political situation with Lyme. I fill him in on what's been happening in blighty, the new 'clinic' and all that. My dad and I are quite impressed by how good value this consultation is - $240 (£150) and for that you get 45 mins with the top man, physical exam, as many prescriptions as you need (I had 8), a colour-coded drug schedule, review of supplements, write-up letter and unlimited free follow up questions from triage nurses (who actually know quite a lot about Lyme). Anyone who says LLMD' s are ripping us off just isn't informed. This guy was seeing two patients after me - and it was 5:15 pm when I left.  He's in early each day and commutes a long way from his family. He has an office full of (generally) helpful support staff he has to keep paid and he has experienced persecution and bankruptcy from just helping people like me. I thank him for doing what he does. He really is one of the good guys.

Some gratuitous showing off about my healthy eating. I didn't have a burger in Washington and subsequent stomach pains at all, honest...;-)

Fire service ambulance. A dicky bird told me this is because people who didn't have insurance weren't getting picked up at the scenes of accidents and so the fire service ended up doing it instead.


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