Monday, 14 January 2013

LLMD letter, excercise intolerance, nightmares and LDA uncertainties

An exciting pick and mix of a post this week folks, some juicy detail on my American consultation, super sour sleeping issues, fluffy flump marshmallow leg video and  a fizzy stick of news from Lyme Disease Action to round things off. Yummy in my tummy.

So, got my letter through from my American LLMD. Wow, 11 pages of small text, what detail! The things they noticed are amazing - things I didn't even realise they were observing! 6 pages on my history alone, and all accurate. Skin- she calls the rose spots cherry angiomata, notes mottling of skin and moderate dermatographism- which is a tendency for skin to form raised welts when scratched (googling this is fun- I am now seriously tempted to write messages on my arms by scratching them- what hilarity- who needs notepaper!). This may or may not be associated with thyroid/autoimmune/coeliac problems, there seems to be little reliable info on it. Cherry angiomata could possibly be associated with Babesia or Bartonella, wading through the guff google churns out on the subject is tricky. They are very common though and many normal healthy people have them.

Have some exciting things going on facially- one eyelid was slightly droopy and the laughter line between nose and mouth on that side was flattened (I'm assuming this means I'm either just naturally a bit picasso-like or could have slight cranial nerve damage). Slight Saccades noted, which I think means my eyes track a bit jumpily. I had moderate fascicilations (twitching) of my tongue- wow! I hadn't noticed, but had noticed twitching of my other muscles, especially thighs and triceps. She calls the spots on the inside of my cheek 'Petichial lesions'- but doesn't say what this means - she told me it was a Bartonella sign. My gag reflex is intact but hyopreactive- so I'm guessing this could indicate some cranial nerve damage. ' They note a 'full' thryroid and ask for a thyroid ultrasound due to some patients having developed malignancy of the thryoid. (I'm sure the NHS will ignore this). 

Neurologically, I have diminished strength in legs and grip. Dysmetria- the tendency to overshoot or undershoot- was noted on heel-to-shin test and finger-to-nose test on the left. I was really pleased to see this- this has been a consistent finding on all neurological tests when I am wobbly (goes away during good periods)- the  NHS 'you're just a nutter' neurologist saw this on me but completely ignored it in her letter about me.

Cardiac- a grade 1 heart murmur is noted. They ask  my GP for an assessment of cardiac arterial status since they have seen patients develop premature atherosclerosis and vasculitis. (GP says she will ask but the cardiologist is likely to say no).

She notes a positive Murphy's sign on abdominal exam, which she is concerned could mean a buggered gallbladder (subacute cholecystitis) so she asks for a scan- the GP has already said the hospital are likely to say no to this. 

They go on to detail treatment plan and recommendations,- nothing is missed, but no outlandish claims are made either. All very thorough and professional and not at all 'quacky' sounding. I'm impressed.

As for my health- I've been having a good old ride on the Lyme rollercoaster this week. Seemed to be improving after a flare, but then went downhill again- vile technicolour nightmares (are there any disaster/horror movie makers out there who want some ideas?), insomnia, weakness, fatigue, nausea, brain fog, and a bit of tippy feeling back. Not sure whether it was a Babesia Herx (Lyme MD blogger thinks they do exist) or just side effects of my scrumptious Mepron- it takes two weeks to reach therapeutic levels apparently and can cause some tasty side effects. I had similar nightmares and depression/mood swings when on mefloquine (for malaria prophylaxis) years ago, so I'm thinking the Mepron (a similar kind of drug) could be the culprit. I am pretty exercise intolerant again -  I went swimming again with kiddo and John and have a good illustration of what happens when I do that (video below):


As you can see-I'll not be doing any ultra-triathlons anytime soon. The effects lasted for a day and a half- quite annoyingly. Before I got ill again, I was getting my fitness back, doing hill walks carrying the bub and decent length bike rides- just doing the household chores was a challenge yesterday. Humph.

In other (much better!) news, Lyme Disease Action have just published their review of the uncertainties- a collaborative process with the James Lind Alliance, patients and clinicians. The Department of Health and the Health Protection Agency were there, to witness the proceedings and so they could see it was a rigorous and transparent process (let's hope they were listening!) . Here is the top 10 list of things we don't know about Lyme disease. 

Now, to an educated Lymie and most LLMD's, this may seem like stating the obvious- we have always known that there are big holes in the knowledge about diagnosis, testing, treatment and transmission routes. However, it seems that the 'officials' and most doctors didn't know this- apparently, many doctors told the LDA that they thought there were NO uncertainties regarding Lyme disease! Not surprising, really, the (IDSA) guidelines and BIA position statement really overplayed the 'long term antibiotics don't work' hand and 'diagnosis is easy, Lyme is rare, testing is reliable,' seemed to be the message given out by the HPA over the years. This was a gross misrepresentation of the Lyme Literature. At last- it's official - there's lots we don't know about Lyme. 

This process may seem like unnecessary, tedious red tape to some Lymies, but I think you've got to play the authorities at their own game- what the LDA have done is move us from a fringe, sidelined position and got us represented - in an official capacity- to get the truth out to the mainstream medical community.

I can't thank them enough. Of course, this is just the beginning, much work has now to be done publicising the findings and filtering them through to policy and research.


Monday, 7 January 2013

Festive fun and new year bleargh

Well, I couldn't have asked for a better Christmas- lots of family, feasting, crazed tearing of wrapping paper and NO LYME!!!!! Thank-you Santa, just what I wanted. From about the 20th Dec to new years eve there was virtually no sign of the Lyme, which was amazing, such good timing. Not that I did anything to actively make that happen, infact I was SLACK! I mean, Slack, slacker than a bus full of pensioners wearing beige crimplene, stay-press and chinos. Slacker than a tart's knicker elastic, slacker than my jaw would be if the NHS competently treated chronic Lyme. I ate rubbish and tons of gluten (turkey butties, who can resist?), drank a fair bit of booze, didn't keep a diary and stretched my remaining drugs out by not taking them for up to 5 days at a time (I was waiting for my new supplies to arrive). I was absolutely fine - even went on wee walks and had people come visit and cooked lots of meals - nothing Lymey happened. Very very pleased. must be a good sign and I hadn't even started my new drug regime!

Of course, it couldn't last and new years eve it came back and I spent the evening welded to the sofa watching  the tremendously violent Kill Bill. My delicious 'yellow paint' Mepron had just arrived, so I could crack on with my new protocol.  Counted out my new tablets and supplements into my ginormous pill box and slurped down my Mepron ($15 a spoonful!!) with a chaser of olive oil and raw almond butter. A study showed that it was much better absorbed when taken with 23g fat, so, to get best value out of my lovely liquid gold, I thought it best to chow down gross quantities of fat with each dose.mmm..lardy.

'Mummy sick, mummy tablets' as my two year old has now learned to say, bless her....

Not all of my supplements are here yet, annoyingly what appeared to be UK amazon shops, turned out to be US amazon shops, so I've got to pay £26 customs charges to get my remaining loot. grrr...

What is really suprising though is that so far, I haven't really noticed any herx from my new regine and I am a week into it now. The Mepron makes me nauseous, and I have had increased tinnitus and fatigue, bit of insomnia and disrupted sleep and am wobblier than a plate of underset pineapple jelly, but my head hasn't exploded, my legs haven't dropped off, an alien hasn't erupted from my stomach, which is nice....just the usual flare-week grottiness, and I can cope with that. Maybe the Amitriptyline has erased any neuropathic pain, or maybe my bacterial load was pretty low to start with.  I have always been on treatment (except for a few brief breaks) whilst symptomatic and so although chronic, I think my spiros are relatively few in number and thus my herxes are relatively mild.

Still pretty exercise intolerant though. John and I took the wee one swimming yesterday and I got rather ambitious and did 16 widths of the pool. What was a slight weeble wobble on the way to the pool turned into a mega-jelly-weak-as-an-anorexic-kitten wobble on the way out, and I'm still feeble and flolloping today, even put the bath stool back into the shower this morning. Thank goodness for my childminder and my wonderful John.

So, back down to earth with a splat and a wobble after a fab break. Learning to be gluten free (the pasta is fine, found one nice bread- tesco ciabatta rolls) and wearing my new onesie (thanks Sis!) whilst it chucks it down outside and I plan the weeks menu- all healthy, low sugar, no gluten, no booze, unfortunately ;-).

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