Monday, 7 January 2013

First trip to Washington

Hi folks, some of you may have noticed, I took down my Washington blog post. After some editing, I've now put it back up, so here it is:
Well, what a busy couple of weeks it's been. My dad and I went galavanting off across the pond in search of the famous Dr X and his gang. Four flights later, I'm back in blighty and very glad I bothered. Dr X and his able PA (Physicians Assistant, kind of like a Dr 'Lite') were fab, the level of experience just really showed. 

My dad and I at the White House (sniper on the roof!)

First of all, their clinic is quite well organised it seems. You have to fill in long forms and write out your chronological history and send all test results before you go. They then can review your case before they've even seen you, which saves a lot of time- and we all know we forget things at doctors appointments. Some people might be put off by seeing a PA, rather than a 'real' doctor, but to my mind, this is just an efficient way of doing things- the PA (we will call her PA), went in to consult with Dr X several times during my consultation and my meds schedule was drawn up by them together. I was there for around 2.5 hrs. Dr X also came in to say hi and explain a few things at the end. Seeing PA meant I could get an appointment within 6 months, unlike most LLMD's who are either not taking on patients or there is a huge waiting list. Also, it's really good value for what you get- my consultation was approx $650, which for 2.5 hrs, plus the write up and aftercare (you can ask triage nurses questions for free), I think is good- when compared to similarly qualified professionals hourly rates. 

They are also really honest- they give you this big spiel to read about how there are other options (IDSA treatment or no treatment) and that they cannot guarantee results, and that no-one knows what the optimal treatments are as the science is lacking. I was impressed with this. You get given plenty of time to read this and then have to sign to agree to being treated with long-term  therapy, which may or may not produce results.

They are quite drug-heavy, which I am fine with for the antimicrobial drugs, but I felt they were a bit OTT in my case with the pain and sleep meds, which I have decided to not take for now as I don't have that much pain. I talked to my GP about it (an intelligent woman who seems to believe me, but is stuck in the middle between a believable patient and two Lyme-denying hospital docs). She has prescribed me something for neuropathic pain (which is intermittent and relatively infrequent but when I do get it, it does stop me sleeping). So I'm taking 10mg Amitryptyline just before bed, which has a side effect of drowsiness, so helps me sleep. I get insomnia in bursts of 3 ish days, but not at the 4 weekly flare time, so I'm thinking that it might be a Babesia symptom.

So, PA took my history, and said she thought I definitely had Bartonella and most likely Babesia. She saw small raised spots on the insides of my cheeks and what she called rose spots on my front. She said these were indicative of Bartonella. No-one has picked up on this before, but when I look it up later, I see that she is right. I remember commenting on the rose spots to John when I first got Lyme- I wondered whether they were related as I couldn't remember seeing them before and they were close to the site of the bite. They seem so insignificant though, that I just dismissed it.

'Rose spots' on my torso (the bigger one is just a mole)

As to the Babesia and other co-infections, I asked what co-infections did she think I'd got and why did she think that. She said "probably all of them" and she said it was just "because I'd been ill so long, had relapsed, had persistant Lyme". "most of our patients like this have the co-infections". So, I guess it's just statistical probability that I have them. They didn't do co-infection testing for me because the tests are so unreliable and also, it would be expensive and I don't have insurance. I have negative Igenex for Babesia microti, Ehrlichia and Bartonella henselae, but she agreed that that "means nothing". So, they are treating me for Babesia (Mepron and Artemesinin), Bartonella and Lyme. PA said my earlier rash pictures were a dermatological Herxheimer reaction, she has seen it in other patients- excellent!.

They did a physical exam and she heard a grade 1 heart murmur. This was probably the slightly thickened valve seen on my Cardiac ECHO.  I wobbled forwards on the Romberg test and was doing a great C3PO impression on the day. I had stopped my antibiotics for 3 days prior to my appointment, so was lovely and symptomatic. I struggled with the heel down the shin test, but not sure whether this was just weakness or Ataxia. My hips didn't crunch, so no obvious arthritis there, despite occasional hip pain.
I also got a name and an explanation for my thunderbird legs- Acute plexitis. Marvellous! Dr X explained that he thought the Lyme was residing in a biofilm near the nerve roots and then could come out and attack the nerve roots when flare time came or I stopped popping pills. This would explain the Neurophysiologists observation that I "probably had C6 and L2/3 nerve root involvement" (he found subtle numbness in a stripe on my arm and thigh, which was also innvervated by the nerve root which innvervates thigh flexion and triceps (my triceps twitch sometimes).

PA had seen my walk before in patients (yay!) and thought it was the Lyme causing it, and also said the cardiac hypokenesis and conduction delay were Lyme-related. So "SOD OFF!" to the stuck-up Neurologist who said "your walk can't be Lyme as it is not ataxic or spastic"... nah na na na nah...;-)

PA also noted that I was tender just below my right ribs, which is where the gallbladder is situated. She said gallbladders are a kind of seat of infection in Lyme. The bacteria invades the gallbladder walls and can destroy it, turning it necrotic. It can also be a sneaky little hide-out for the little turkey-twizzling buggers, as antibiotics penetrate the gallbladder poorly. So, sometimes Lyme patients have their gallbladder whipped out. She said to ask the oh-so-obliging NHS for an abdominal ultrasound (which will probably come back normal) and a HIDA scan with CCK challenge, which will see if it is functioning properly.

PA also thought that Lyme was sexually transmitted. She said that if someone did a proper epidemiological study, they would find evidence for sexual transmission- so be careful out there folks...
She also said she thought it could probably be transmitted by vectors other than ticks, she mentioned mosquitoes, but didn't cite any particular evidence.

They also asked for a Thyroid ultrasound and nuclear stress test to assess coronary artery status. Apparently, she has seen coronary artery disease in patients with no other risk factors apart from Lyme. I had read that Lyme messes with the Lipid metabolism and I do have a slightly raised cholesterol. I since asked my GP for these tests, but she is doubtful the cardiologist/endocrinologist will do them but she is asking for me.

I also have to have a full blood count and liver function tests every 4 weeks, the GP is happy to do this. They took some routine bloods and checked Thyroid free T3 levels whilst I was there (haven't got results yet). They felt my current treatment was suppressing the bugs but not doing a lot of killing, which was why I relapse so quickly when off the tablets.

So, my treatment plan? Enough oral antibiotics and supplements to stun a horse, but pulsed, with drug holidays (I love that term, does that mean I get to sit on a beach in a sombrero, sipping sangria every three weeks??). THANK GOODNESS I don't have to do IV (well, not at present, we can never say never with this disease said Dr X).

My schedule? Hold on...are you concentrating?....I shall say this only once (it's complicated!)...

Week 1- Mon, Weds, Fri, I take:
Cefuroxime 500mg twice daily
Azithromycin, 500mg twice daily
Mepron 2tsp twice daily
Artemesinin 1000mg twice daily.

Week2-Mon Weds Fri, I take
Cefuroxime 500mg twice daily
Azithromycin, 500mg twice daily
Mepron 2tsp twice daily
Artemesinin 1000mg twice daily.
Tinidazole 500mg twice daily Thurs and Fri

Week 3- No antimicrobials at all (eek!, scared!)

Start over at week 1.

Supplements I am to take (every day apart from not taking alpha-liphoic acid and co-enzyme Q10 on days when I take Mepron and Artemesinin), are:

Alpha-lipoic acid 400mg daily
Co-enzyme Q10 400-600mg daily
Magnesium malate 1250 mg twice daily
Methylcobalamin (B12) 5000mcg daily
Methylfolate (deplin) 1000mcg 3-4 times daily
Nattokinase (a biofilm breaker) 50-200mg daily
N-acetyl L-Cysteine 500mg twice daily
Omega 3  1000-2000mg twice daily
Probiotics1 to 10 billion CFU daily in 3 or 4 divided doses
Resveratrol (extracted from skin of red wine, grapfruit and japanese knotweed) 250-500mg once daily
Saccharomyces Boulardii (a probiotic) 100-200mg twice daily.


They also prescribed Neurontin, Lamictal and Ativan (lorazepam) for pain and sleep, but as I said, earlier, I'm going to pass on these for now.

The Mepron is pricey, the cheapest I could find is from at around $660 dollars a bottle This is apparently around 3 weeks supply or maybe more with the pulsed dosing, I have just ordered one bottle for now to see if I'm allergic to it or anything. Takes 2 weeks to arrive from Canada (you fax the prescription). As for the other stuff, the supplements are ordered online (I did it all on Amazon shops, probably not the best way, but they had the recommended brands in UK Amazon stores and it was easy). The Azithromycin, Tinidazole, Cefuroxime I got whilst I was there. We tracked down a not-for-profit pharmacy hidden on the 6th floor of an office block (AHF Pharmacy) and they were much cheaper than normal pharmacies. They ordered stuff in next day for me. They had Mepron, but it was twice the price of Canada Drugs, so I didn't get it. I also got my Neurontin and Lamictal from there. Total cost of these drugs (3 months supply) was $343. The supplements I ordered since, were £180 (some were three months supply, some less). The flights were £550 each, hotel was $400 each (two rooms, 4 nights). So, not a cheap trip, but in terms of Dr X's clinic, certainly not a rip-off, and waaaaaaaay more affordable than IV. I don't have to go back for months, they are letting me have a phone consult for a follow up in 10 weeks. More Yays!

Overall, I'm happy with their expertise and happy (but nervous) about the pulsed/drug holiday idea. Letting your immune system kick in and do some work seems good idea in principle, but also scary. I need to be able to function on my weekends and week off. I don't start it until the mepron arrives, as I want to be on the full whack when I do, so we will see what transpires.

Oh, and they say I've got to go Gluten free, as most of their patients have Gluten-sensitivity. I don't have massive issues with Gluten I don't think, but have had cramps a few times from eating bread, and did read one paper showing Gluten sensitivity can cause ataxia, so will give it a go (whilst hankering for toasted muffins and crumpets).

In other news, the Lyme-denying, derisively snorting Neurologist sent me a letter which is massively infuriating. She is not telling the whole truth (as she also failed to do in her consultation letter) - by omitting detail that contradicts her preconception that I cannot have Lyme. The electrophysiologist's observations of likely C6 and L2/L3 nerve root involvement are not mentioned at all. Neither is the finding that there were possible mild myopathic features on one nerve. Instead, she says "this has not shown any evidence of generalised neuropathy, nor has it shown any definate myopathic changes or neurogenic features" She then offers me a Psychiatrist appointment. Humph.....this is highly unprofessional and I will be making a complaint. She is pretty much lying, which is just not bloody on, you bitch!!!!!!!! (I will word my complaint slightly more politely than this!).

So it's thumbs up for Dr X and Washington in general. Blew apart my preconceptions of American cities- not full of hot dog munching chubbers, unable to walk further than to the fridge and back. No, it was full of joggers, health food shops, funky supermarkets, normal sized portions of decent food. It was also quite walking friendly (apart from the mhhhassive intersections which were too big for my underpowered pins), and dripping with free museums, squirrels, students and blue jays. We even stumbled on the presidential cavalcade one night (blimey, the land of the scared, can't see David Cameron requiring closed streets, 20-car escort, police outriders, choppers etc- madness). All good


  1. Hello again. I've started getting those red spots as well, they come and go but I'm sure I'm getting more of them. I don't have other symptoms of bartonella though.

    I did some googling and rose spots seem to be linked to typhoid fever, which is caused by salmonella. It was my understanding that salmonella is often found in healthy people's gut in small amounts and is just part of the natural balance of bacteria. However, could it be possible that extensive anti biotics would kill off the good bacteria keeping the salmonella at bay, and therefore giving them more opportunity to grow? Obviously I'm not saying we have full blown typhoid fever, but if there's anything that lyme has taught me, is that when doctors think infections are only short term acute, it's not always the case. You can be chronically ill in a more subtle way. I've stopped the anti biotics yesterday because of the stomach pains I've been having, assumed to be caused by yeast overgrowth. Now I've got more and more rose spots I'm suspicious.

    I'm not saying anything to my GP, she already thinks I'm a hypochondriac. I'll show my lyme doc when I next see her though, at the moment I'm waiting for her to reply to my email about what to do about the yeast problem. I was already on anti fungal meds, GSE, TONS of pro biotics and completely carbohydrate free. :(

  2. HI Decimawho,

    Interesting about the typhoid fever, though I'm not sure about whether the spots are the same thing, wikipedia says Typhoid rose spots are temporary, lasting 3-4 days. To be honest, I'm not entirely convinced about the rose spots, I have normal, healthy, not riddled with disease friends who have these kind of little pink spots, I wonder if they are just normal? Then again, they are near the site of the original tick bite and I do remember commenting on them soon after my original lyme started, having not noticed them before - but then again, maybe I just noticed them then because I was looking for a rash! Who knows??
    The washington doc said the spots on the insides of my cheeks were also indicative of bartonella- she mentioned something about it looking like I've just bitten the inside of my cheek when I hadn't. I had a look and I could see redish spots, but can't see them now, but I do have all kinds of lumpy bits inside my cheeks, I will put up a photo (quite gross one) when I get my US LLMD letter and I find out what she called these spots. A quick bit of googling Bartonella and oral mucosa seems to suggest immunocompromised patients (i.e HIV but this would also apply to Lyme I guess) get lesions from Bartonella, sometimes inside the mouth. Bartonella and Rose spots (according to my googling- a dangerous tool in the hands of a non medic like me) might also be associated with endocarditis and I do have a slightly thickened heart valve (picked up on an echocardiogram and by listening to my heart) and also have mildly poor blood flow through the heart, which I guess could be endocarditis?
    Yeah, mentioning Typhoid to the GP might not be a good idea- I can imagine this consigning you to the 'loony files' indefinately (not that you are loony of course!).
    Hope your stomach pains ease up soon. Have you spoken to your LLMD about pulsing the abx? Its an approach which some LLMD's take and it could maybe reduce yeast overgrowth? Also, double check your probiotics are in date, they can have quite a short shelf life..