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.



  1. Hi great post thanks.
    Murphy's sign on abdominal exam - yes I remember that well and the doctor doing it enjoyed my obvious pain and chuckled - he prescribed antibiotics until I had my scan - scan was clear but interestingly my arthritis symptoms improved and I clearly remember skipping ( well not quite) along the bus station for a bus to my scan. Those were the days before I knew I had Lyme actually I think they were during the first two years before my second lot of bites which really spiraled me into chronic Lyme Disease. I never connected the dots about antibiotics in those days but with nothing on the scans I continued with gall bladder problems for many years managed to some extent with diet - if I had a glass of milk I would get gall bladder squeezing within 20 mins - I eventually had a further scan some considerable time later again with nothing.

    Interestingly though amoxy did not help relieve this problem when I was eventually diagnosed with Lyme but later when LLMD suggested Doxy the pain went - wonderful! However a photosensitive reaction from having a cup of tea in weak April sun meant I went back onto Amoxy and back came the gall bladder squeezing - in time I took amoxy plus clarithromycin and gall bladder calmed down again. It has not returned over the last two years of only a few short antibiotic treatments so hopefully it won't.

    Of course I am only talking about one symptom. I spoke to someone with Lyme treated by a well reputed LLMD in US, she had big problems with gall bladder and a lot of doctors would ease off antibiotics for fear of damaging gall bladder but her LLMD did the opposite and she improved and is doing well.

    Your GP can't just dismiss this symptom she can do the test herself and then she should refer you without a scan no one knows if the gall bladder has stones or is struggling with infection or what.

    Yes the LDA news is wonderful especially as Dof Health and HPA have been overseeing this and d of H say In correspondence from the Dept of Health, Earl Howe, 12.12.2011 via my MP Anne Milton .The Dept of Health says 'The Department is working with Lyme Disease Action (LDA) and I am aware that you as Health minister, have met with LDA representatives. We are supporting its initiative with the James Lind Alliance and await the findings of their review.'

    Now they need to be held to account.

    Good luck with your treatments.

  2. HI Joanne,

    Thanks for the details of your gallbladder problems. Some people view problems with the gallbladder as being caused by antibiotics, primarily ceftriaxone. However, I think it is more complicated than that. My LLMD explained that the gallbladder can be a seat of infection. Borrelia preferentially invades the walls of the gallbladder, causing inflammation and sometimes necrosis. The gallbladder is poorly penetrated by antibiotics and so acts as a hide out for Borrelia, thus can become a source of re-infection when spirochetes have been cleared from other systems. Some LLMD's remove diseased gallbladders for this reason, and although it makes sense, I kind of want to hold onto my gallbladder until (if) it becomes seriously necrotic. I am going to re-visit my GP armed with the LLMD letter and LDA uncertainties and ask again for the tests. We will see.
    Yes, great news about the James Lind alliance/LDA work, lets hope it does initiate change.


  3. Hey, I was just randomly googling and re-read the patient page on lyme. I read it last about 6 months ago and as you'd expect, it took the same line as the IDSA guidelines and was just ridiculously incorrect. Now, however, it's not quite up there with the ILADS ideas, but it hints at various things that are a huge improvement! It says in *some* cases more than 28 days of anti biotics may be required. It also says equivocal ELISA tests should then be tested with a western blot. My very first test was ELISA and equivocal and my GP went with what the patient website said and just retested with ELISA (then negative.)It also talks about IV ceftriaxone and involving specialists much more than it did before, plus it's got rid of the rubbish about incorrect anti biotics being useful. It's not perfect, but it's better than it was, and if my GP was using it, a lot of others may be too.

    Small victory?