Category Archives: personal

Open Letter to Dr Brad McKay

Dear Dr McKay,

You recently had syndicated an article in various newspapers across the world and appeared on Australian TV entitled “The great Australian Lyme consconspiracypiracy”.

As you are most likely aware by now, this article has been extremely controversial.

I would like to address some of the inaccuracies and omissions in your article about Lyme Disease in Australia.

“No proof”

Your article states “Lyme disease is real, but there’s no scientific proof that it’s occurring in Australia.

This is incorrect.  B. Queenslandica was found in rats in Richmond, North Queensland in 1962.  Additionally, other tick borne infections associated with Lyme Disease such as Bartonella, Babesia, Rickettsia etc. are found in Australia.

A more recent ongoing study at Murdoch University has also found evidence of relapsing fever Borrelia and a new type of Neoehrlichia bacterium.

“Only in Europe and North America”

Your article states “this bacteria is transmitted to humans via tick bites in North America and Europe.“.

This is incorrect. Various Borrelia strains have been identified across Asia and Japan.

“Overseas labs are unaccredited”

This is incorrect. Having been pressed by various people, including myself on Twitter, you have said that a valid accreditation is only the NATA one. To summarily dismiss overseas accreditations as bogus is highly illogical.

The two main labs that people use for overseas tests, IgeneX in California, and Armin in Germany, are both accredited. Igenex uses CLIA, Clinical Laboratory Improvement Amendments of 1988, and are United States federal regulatory standards that apply to all clinical laboratory testing performed on humans in the United States, except clinical trials and basic research.

This is a very stringent accreditation.

ArminLabs is a German specialist Lyme testing lab run by Dr Armin Schwarzbach, formerly of Infectolab and the BCA clinic who treat tick-borne diseases. ArminLabs works in association with Gärtner Labs in Ravensburg and so has been accredited by the Deutsche Akkreditierungsstelle GmbH (DAkkS) (German Accreditation Board), all tests are CE-certified for use within the EU.

NATA also has reciprocal agreements with many other countries, including the two mentioned above.

Again, dismissing overseas labs with government-accredited approval is not only highly illogical, but by your own insistence that NATA is the only valid accreditation, patently wrong by virtue of the mutual recognition.

Dismissal of criticisms of NATA labs

You state “Lyme activists will tell you that NATA-accredited labs don’t detect Borrelia because their machines aren’t sensitive enough to pick it up. The truth is that unaccredited labs aren’t specific enough, and tend to deliver positive results for Borrelia whether you’ve got Lyme disease or not.

The truth is that NATA labs in Australia only detect 2 out of the 14 species of Borellia known to cause Lyme Disease / Lyme-like Disease / Relapsing fever. So when you talk about labs not being specific enough, being specific to the point of only checking a small number of species is certainly going to return fewer positives.

species.jpg

“We don’t know what it is, but we know it’s not Lyme.”

How do you know it’s not Lyme? It’s a logical fallacy to prove a negative. For example, if I claim there are invisible pixies at the bottom of my garden you are not going to be able to prove otherwise.

“Using up to four weeks of antibiotics is the treatment recommended to eradicate Borrelia

This is only if you follow the outdated and discredited IDSA guidelines, which were recently dropped by the CDC. The latest peer-reviewed guidelines published by ILADS does not recommend only 4 weeks of antibiotics.

Quoting:

Treatment regimens of 20 or fewer days of phenoxymethyl-penicillin, amoxicillin, cefuroxime or doxycycline and 10 or fewer days of azithromycin are not recommended for patients with EM rashes because failure rates in the clinical trials were unacceptably high. Failure to fully eradicate the infection may result in the development of a chronic form of Lyme disease

And:

While continued observation alone is an option for patients with few manifestations, minimal QoL impairments and no evidence of disease progression, in the panel’s judgment, antibiotic retreatment will prove to be appropriate for the majority of patients who remain ill. Prior to instituting antibiotic retreatment, the original Lyme disease diagnosis should be reassessed and clinicians should evaluate the patient for other potential causes of persistent disease manifestations. The presence of other tick-borne illnesses should be investigated if that had not already been done. Additionally, clinicians and their patients should jointly define what constitutes an adequate therapeutic trial for this particular set of circumstances.

“Use ELISA as a screening test”

ELISA is known to deliver both false positives and false negatives. You said to me on Twitter that we should use ELISA as a screening test and if it’s positive, then use the more accurate Western Blot. Given the failure rate of both ELISA and Western Blot, this is a highly illogical approach.
The CDC itself says that “the diagnosis of Lyme disease is based primarily on clinical findings, and it is often appropriate to treat patients with early disease solely on the basis of objective signs and known exposure.” Based on this recommendation, the diagnosis of Lyme disease should not be contingent on a positive ELISA followed by a positive Western Blot.

Both tests rely on antibody proteins produced by the immune system and both HIV and Borellia are known to suppress immune response. If someone tests negative but is still symptomatic, a clinical diagnosis is valid.

 You didn’t tell us how your Lyme patient fared

I sent her straight to hospital in an attempt to save her liver and her life.

You didn’t tell us what your diagnosis was, if this woman does not have Lyme. Presumably she had unexplained neurological, joint, fatigue and cardiac symptoms? CFS/ME, Fibromyalgia and “I don’t know” are all neither useful nor helpful as symptom labelling rather than a causative explanation.

Can you tell us about all the people you’ve successfully treated who have come to see you with these conditions? How did you treat them? What were their long-term outcomes?

Conclusion

Your article is not only misleading and inaccurate, it is dangerous. There are many chronically ill people in Australia who need help who may now not seek advice in the right place.

Let me propose something to you: If someone presents with symptoms known to be Lyme disease (joint pain, neurological problems, cardiac problems and fatigue, to name a few) what is the likelihood they have a number of concurrent separate issues? If that same person knows when they were bitten by a tick and experienced an EM rash shortly before onset of symptoms, what is the most likely cause? If someone spent years with doctors who cannot make this person better, who then seeks a Lyme-literate physician and undertakes a Lyme-specific protocol and recovers, what is the most likely cause of the original symptoms?

Let’s look at the balance of probabilities here.

I humbly await your response.

Edit: I’m attaching a further reference of Karen Smith’s counter argument of the Australian Government’s denial which goes into some scientific detail of why the study performed over 20 years ago was flawed.

Relapsed again

It seemed too good to be true after my last post, and it was.  Within days I had relapsed after finishing the last course of Bactrim my symptoms were back, worse than ever.  So bad, that I had a trip to hospital courtesy of an ambulance which had to be called because I was in so much pain.  Oh sweet, sweet morphine, you are a cruel mistress.

The Bactrim was only holding the Bartonella at bay, it seems. My LLMD has now put me on a month’s worth of Ciprofloxacin, after verifying that a sore tendon was not too damaged.  Why do that?  Well, Cipro screws up tendons and ligaments if you take it too long so I had to verify that things were OK to start with.  I also have to take it easy and not exert myself too much in case I damage weakened tendons.

The one piece of good news is that a recent endoscopy showed no fungal infection from all the antibiotics I’ve been taking.  Unfortunately an echo test on my heart still shows a lot of fluid in the pericardial sac and I still have a huge amount of pain there which keeps me awake at night.

Because of all this, I am sad to be missing a work function in Austin this week, but it would have been foolish to travel with the tendon risk (moving my luggage would be a problem), my high levels of fatigue, and not to mention the pericardial fluid can become life-threatening at any time.

My Road Through Hell

 

Hell

I’ve now been on treatment for Lyme disease for a little over twelve months.  Without a doubt, this has been the worst twelve months of my entire life.  It’s almost impossible to convey the range of pain that I have endured, the mental anguish, and the struggle to find the will to live.

Six months ago I was about at rock bottom.  I was going trough herxes from hell, suffering from heart complications including cardiac pauses (my heart would stop for several seconds at a time), and headaches that felt like someone was driving a pick axe into my skull. Then there was the brain fog; the confusion and memory loss that left me feeling stupid and helpless in front of people who just didn’t understand how I could not remember simple things I had talked about with them only a few hours ago.

On top of that, I had extreme fatigue that left me unable to climb the stairs at home without stopping every few steps to get my strength back in my legs.  Many of my days have been spent as a quivering mess on the floor, unable to speak, move or do anything because I was in so much pain and close to passing out.

In short, I was pretty fucked and thought I was about to die at any time.

Then I discovered an antibiotic that was actually making a difference to my heart symptoms—it’s called Bactrim (or Trimethoprim/sulfamethoxazole to give it its full name).  I started taking it in late December and two weeks later I was heart symptom free!  The course of drugs then ran out (I had 4 weeks’ worth) and ten days later I had relapsed and was getting chest pains and palpitations again.  I started another month’s course and felt better again after a couple of weeks, so it was clear that this drug was doing something to help me with my Bartonella infection.

It struck me that I have been so ill for a long time that I hadn’t really noticed that I was slowly getting better lately.  At least I hope I am getting better — I’m now at a “wait and see” stage after having stopped the Bactrim for a second time and hoping to hell that I don’t have another relapse.  I’m probably about 50% better than I was a year ago, I now have to wait for the last remnants of the Lyme and Bartonella bacteria to be driven out of my system.

In utero

My 2nd son (6 years old) tested positive on the Western Blot for Lyme.  I was always a bit suspicious and now my fears are confirmed.  He had a few signs, like dark circles around his eyes, a raging thirst all the time, and behavioural problems.

He is most likely to have got it in utero, which also probably means that my wife and our youngest two twins have it (they have dark circles under their eyes too).  Thankfully my eldest seems asymptomatic.

Under advice from my doctor, I’m trying number two out with some Samento and Banderol. He says we should see an improvement in behaviour in 4-6 weeks and then we can consider moving on to antibiotics.

As for the wife – once I am stable we’ll try her out with some doxycycline to see if she herxes.  We don’t want her debilitated by treatment at the same time as me…

Rifampicin continued…

I have had a reasonable amount of success with the Rifampicin.  My heart palpitations pretty much stopped over the course of a couple of weeks and stayed away until the end of that prescription.  My doctor put me on a doubled dose for another 6 weeks so let’s see how that goes…

In the meantime, the palpitations came back a little.  I’m not sure whether this is because I had a 4 day gap between courses or whether it’s part of a herx or otherwise caused by the increased dose.

I’m committed to flying across the Pacific at the weekend (I’m going to San Francisco for a week) — I hope I don’t get an attack on the plane 🙁

Unscheduled hospital visits…

… yeah, so I had some really bad heart palpitations 2 nights ago and ended up calling an ambulance at 1am.  This has been happening quite a lot in the evenings lately, but this time it was unbearably painful.

Long story short, seems like the bartonella is causing huge ectopic beats as it interferes with electrical impulses in the body.  I’ll be seeing a specialist next week to see if I can find a way of minimising problems before starting rifampicin.

Understanding Chronic Lyme Disease

It’s obvious from talking to a few people that hardly anyone understands what having chronic Lyme disease means.  This is not surprising as I barely knew myself until a few months ago — but I have educated myself through a lot of research and speaking to my specialist doctor.

I’m going to try to attempt to describe what this is all about and what I am going through, in the hope of spreading understanding.  Make no mistake, I am not looking for sympathy, just for people to understand.

What it is

Lyme is an evil and clever bacteria called Borrelia.  It uses resist and evasion tactics that any SWAT team would be proud of by hiding in muscles, bone, cartilage and crosses the blood-brain-barrier to hide deep in brain tissue.  It also changes form when under attack and builds itself a wall to resist antibiotics.

This is NOT a 30 day antibiotic course disease, it takes months and often years to eradicate.

What it does

Lyme is often called The Great Imitator.  It has so many symptoms that unless they are taken as a whole it’s incredibly easy to misdiagnose.  And sadly that is what is happening across the world.  I recently heard that 80% of patients diagnosed with M.E. who had a test for Lyme were positive for it.

Here’s a selection of my particular symptoms, but this is by no means exhaustive:

  • Extreme fatigue, with aching muscles and no energy
  • Bone and joint pain with stiffness, often misdiagnosed as arthritis
  • Many, many neurological symptoms: forgetfulness (I sometimes fail to recall the name of someone I’ve known most of my life), poor concentration levels, massive headaches, nausea, faintness, anxiety, depression, impulsiveness, mood swings
  • Insomnia
  • Tinnitus
  • Muscle twitching
  • Blurry vision and “floaters”
  • Pink eye

What is a co-infection

Almost everyone who has Lyme also has a co-infection. This is additional bacteria that are contracted in the same tick bite that delivers the Lyme.  I have something called Bartonella which is responsible for some very nasty symptoms, one of which is life-threatening:

  • Burning in feet and foot pain (often misdiagnosed as plantar fasciitis)
  • Swollen, painful lymph nodes
  • Skin rashes
  • Heart problems, pericarditis

The last of these is one of my biggest problems and the reason I am not travelling for work right now.  Pericarditis is a swelling of the pericardium, the sac around the heart. It also traps fluid which is known as a pericardial effusion.  This is a serious issue – if the fluid becomes too much it prevents the heart from beating efficiently and eventually makes it stop.

This condition is responsible for missed beats, palpitations and extreme pain.  When I say extreme, I’m talking nothing like I have experienced before.  The pain and palpitations will come and go at random and when it kicks off I feel the blood draining from my head and I have to lie still for anything from 15 minutes to 4 hours or more, before it goes away.

What is the treatment

There are many strains of the bacteria and treatment is somewhat of an art as much as it is a science.  As I previously mentioned, the Borellia will shift form.  Its main form is a spirochete but it also takes a non-cell wall form (cell walls are what antibiotics work on) and a dormant cyst form.  All of these forms have to be taken care of to ensure it doesn’t come back.

The treatment I am on is a variety of anti-malarial, antibiotic and herbal supplements.

The treatment is worse than the disease

That’s right – the treatment makes everything worse.  Much worse.  As the bacteria die off, they dump endotoxins into your blood stream which triggers many things:

  • Exacerbation of existing symptoms
  • Flu-like symptoms with huge headaches
  • Pain, pain and more pain

This is called a herxheimer reaction, or herx for short.

I have to cope with this by constant detoxing.  I take a few different detoxing supplements and have to drink in the region of 4 litres of water a day to flush my system out.  I have learned that when I am experiencing a herx, I become a zombie and cannot function at all.

In addition, I am completely intolerant to alcohol, I will get an awful headache within 5 minutes of a drink.  Life and soul of the party, me!

Outlook

I am hopeful that I will resolve everything eventually but I know it will take me personally another year or two before I am better.  In the meantime, I feel like something is stealing my life away from me, but I have to remain strong.  I have a family to take care of.