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.
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My dad and I at the White House (sniper on the
roof!)
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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.
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'Rose spots' on my torso (the bigger one is just
a mole)
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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.
Phew!
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 CanadaDrugs.com 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
