Lyme Disease: Results Appointment

Last Wednesday I had an appointment with my doctor to discuss the results of my Lyme testing. Having looked at the results myself, I was not sure what the results indicated. They seemed to suggest that I may have chronic Lyme disease, but then again, I may not. I went in expecting a "yes" or "no" from my doctor, but instead got a "highly likely, but not definitely".

Test Results:
The immunoblot (Western Blot) and Elispot tests showed no indication of the presence of Borellia Burgdorferi (Lyme). These tests are 'indirect' tests which measure a person's immune reaction to the bugs. Neither of these tests are definitive. While much more accurate that the ELISA test, the most widely used test (and also one of the least useful) for Lyme, false negatives are still known to occur.

The CD-57 NK- Cells testing looks at an immune marker that tends to be low in the presence of Lyme disease. As you can see below, my CD-57 count is quite low (55). This, again, is not conclusive and absolute evidence of Lyme disease, but evidence that it may be present. "Other illnesses, such as myalgic encephalomyelitis (chronic fatigue syndrome), rheumatoid arthritis or multiple sclerosis might mimic Lyme, but those illnesses will not cause a drop in the CD-57" (McFadzean, 2012).

Diagnosis:

While these tests may be very helpful in doctors diagnosing Lyme disease, Lyme is primarily a clinical diagnosis. "Many cases of Lyme disease are not diagnosed because of negative lab results, even in the face of a textbook presentation of signs and symptoms, or a strong enough case history to warrant the diagnosis" (McFadzean, 2012) My doctor believes that my symptom picture and history, plus the consideration of my CD-57 test and other previous testing that points towards the possibility, is enough to suggest that there is a high likelihood of chronic Lyme. He has, with my permission, started me on treatment which, in itself, will give clues into the presence of any infection. 

"Theoretically, if the person did not have Lyme disease, a course of antibiotics would not dramatically affect their symptom picture. An antibiotic trial that validates the Lyme diagnosis might give a response of either an improvement, or a worsening of symptoms consistent with a Herxheimer reaction... either way, some shift in symptoms would be expected." (McFadzean, 2012)

I am also to complete a questionnaire which will help to identify likely co-infections.

Treatment:

I am being eased into treatment slowly. The first medication he has put me on is Plaquenil (200mg), 3 days a week for the first week, then once daily from that point. After the first week of daily Plaquenil I start with Azithromycin (500mg), beginning with just 1/4 tablet daily.

"Plaquenil is essentially an anti-malaria drug, although it has multiple uses in medicine. In Lyme treatment we primarily use it to address cyst forms of Borrelia...

Unlike prednisone, which is immune suppressant (and should never be used in patients with Lyme), Plaquenil is more immune modulating and balancing, thus reducing the autoimmune process without wiping out the beneficial and necessary parts of the immune function.

Another benefit of Plaquenil as mentioned above is the way it can shift the pH of the cell to make azithromycin and clarithromycin work better." (McFadzean, 2012)

When used as part of Lyme treatment protocol, 200mg of Plaquenil, twice daily, is the recommended dose, according to Dr Nicola McFadzean, a lyme literate doctor and naturopath, and author of several books on Lyme disease and it's treatment, including 'Lyme Disease in Australia: Fundamentals of an Emerging Epidemic'.

"Azithromycin is a gentle medication that is typically well tolerated. While it is not the more effective for Borrelia itself, nor used as a first-line therapy, it has it's place in Lyme treatment protocols. It is more effective for musculoskeletal symptoms such as joint and muscle pain than neurological symptoms. Some individuals who would not be able to tolerate doxycycline can handle azithromycin...

Azithromycin and clarithromycin are not considered first line drugs for Lyme due to their limited effectiveness. This may relate to the fluid pocket created around the Borrelia bacteria in the cell. The fluid is quite acidic, meaning it has a low pH, and that acidity may inactivate azithromycin and clarithromycin. A way to overcome this is to give hydroxychloroquine (Plaquenil) or amantadine, which can raise the pH of the fluid and allow the two medications to work better." (McFadzean, 2012)

Dr McFadzean recommends dosing Azithromycin at 500-600mg daily.

Next Steps:
So, the journey continues!
I have an appointment to follow up with my doctor on Wednesday October 16th. Particularly due to the way that I am being slowly eased into treatment, it may take a number of weeks, even a few months, until we can say for sure whether or not I have Lyme disease (as a result of the response, or lack of, that my body has to treatment). So far I have taken 3 doses of Plaquenil. Each time, I have felt nauseated in the afternoon and evening after having taken the drug in the morning, and have not had this nausea on the in-between days. However, as nausea is not a new symptom to me, I can't say at this point whether this might actually just be a coincidence. Nausea is also listed as a possible side effect of Plaquenil. I seems to me that it is likely that if I am to experience 'herxing' this is less likely to occur before I start on the Azithromycin. Even then, it might not occur until the dose has been increased significantly. It is also highly likely that other medications will be added at some point. I would, of course, like to have an answer as soon as possible, but I will just have to be patient and take this one step at a time. 
I'll find out the next step three weeks from tomorrow.


Do you live in Melbourne, Australia? 
Are you interested in learning more about Lyme disease, and why it is so very important for there to be greater awareness of this illness both within the medical community and the general population?
Please check out this event to be held on October 29, hosted by Catherine Deveny.

If you do not live in Melbourne, but would like to know more, a great place to start is by watching the documentary 'Under Our Skin'

You can also learn more about Lyme disease in Australia by reading Dr Nicola McFadzean's fantastic book on the subject.

Getting To Know Your Shame Gremlins

On Friday night, while having a conversation with a friend, anxiety unexpectedly came up and gave me a powerful shove. It left me feeling a bit shaken and asking "where the heck did that come from?" As I sat with my anxiety, the answer to my question became clear. Shame. Mr Anxiety was coached and encouraged by the shame gremlins that live deep inside of me. Over the past couple of days, I have spent some time journalling and attempting to get to know these gremlins better.

This morning, I picked up a book that I am in the process of reading: 'Daring Greatly: How the Courage to Be Vulnerable Transforms the Way We Live, Love, Parent and Lead' by Brene Brown, and found that the very next part of the book deals with shame. One part in particular resonated perfectly with how I have been feeling, and the shame gremlins that I have been trying to get to know (in order to vanquish!) So, I thought that I would share it with you all, so that you too might benefit.

Shame resilience, as Brene Brown says, is also "key to embracing our vulnerability. We can't let ourselves be seen if we're terrified of what people might think. Often 'not being good at vulnerability' means that we're damn good at shame." (p61)

(Note: If you do find this helpful or eye opening, I highly recommend buying the book)


"What is shame and why is it so hard to talk about?...
1. We all have it. Shame is universal and one of the most primitive human emotions that we experience. The only people who don't experience shame lack the capacity for empathy and human connection. Here's your choice: Fess up to experiencing shame or admit that you're a sociopath.
Quick note: This is the only time that shame seems like a good option.
2. We're all afraid to talk about shame.
3. The less we talk about shame, the more control it has over our lives.

There are a couple of very helpful ways to think about shame. First, shame is the fear of disconnection. We are psychologically, emotionally, cognitively, and spiritually hard wired for connection, love and belonging. Connection, along with love and belonging (two expressions of connection), is why we are here, and it is what gives purpose and meaning to our lives. Shame is the fear of disconnection - it's the fear that something we've done or failed to do, an ideal that we've not lived up to, or a goal that we've not accomplished makes us unworthy of connection. I'm not worthy or good enough for love, belonging or connection. I'm unloveable. I don't belong. Here's the definition of shame that emerged from my research:
Shame is the intensely painful feeling or experience of believing that we are flawed and therefore unworthy of love and belonging." (p68-69)

The good news is
"Shame derives it's power from being unspeakable... if we cultivate enough awareness about shame to name it and speak to it, we've basically cut it off at the knees. Shame hates having words wrapped around it. If we speak shame, it begins to wither. Just the way exposure to light was deadly for the gremlins, language and story bring light to shame and destroy it." (p58)


What are your shame gremlins telling you?
And how has that been stopping you from living your life to the fullest, a life of daring greatly?

Reflections on Facebook and Vulnerability

Do you ever find yourself looking at other people's Facebook profiles & thinking to yourself that their life is so much more interesting/exciting/happy/successful/beautiful than yours?

Most people choose to hide their struggles, failures, grief & fears. Instead, creating a 'virtual life' on Facebook, indeed, often in the 'real' world also, free of these things that we don't tend to like or enjoy. Or, if we do talk about them at all, we are careful to do so in a way that we feel will be 'acceptable' and will not show us as 'weak' or 'inferior'. To be honest about these things would make us vulnerable, and vulnerability is frightening (trust me, I know!) We fear rejection from others if we were to show them our 'brokenness' (or is that just me?) Perhaps, it's not even all about how others will react, but the fear that if we are honest about our struggles to ourself, it will be more than we can handle.

Yet, it is only through vulnerability, through taking down our protections, and letting people and experiences in, that we are able to experience love, belonging and joy in their glorious fullness.

Sure, there are some things that are inappropriate for social media, and I'm not saying that we should all use Facebook to vent about our deep grief and traumatic experiences. That is helpful neither for the person venting, nor their Facebook friends. But what if we were just a little more honest about the fact that our lives are less than perfect, and a mixture of both enjoyable and difficult, good and bad?

It is also worth noting that many of us have hundreds of 'Facebook friends', including that guy that you met once at a wedding, and that girl who you knew in primary school. These are people with whom we don't have a significant relationship, they haven't earned our trust, nor have we earned theirs. It makes sense that we would hesitate to share anything beyond superficial with those who we hardly know and have no communication with apart from social media! So, why do we insist on having so many Facebook 'friends'? Are we afraid of hurting people if we de-friend them? Does it make us feel better about ourselves to see that we have so many 'friends'?

By feeling the need to have so many 'friends', we make the possibility of vulnerability a more frightening prospect. In turn, by choosing to stay 'safe' and post only photographs and status updates that depict an identity that seems acceptable to others, we are feeding others' fears that their life is inferior, and encouraging them to also censor their posts. Furthermore, as we keep ourselves 'safe' we also block ourselves from experiencing those things that require the greatest vulnerability; love, belonging and joy.

I took the photographs below yesterday, just about half an hour apart. The photo on the right is much more  'Facebook worthy', with hair and makeup done. However, those things hide the tiredness and sickness more clearly seen in the 'before' photo on the left. Neither photo shows the whole truth. I am not only sick and tired, nor is my life all 'bunnies and sunshine'.

A quote from Brene Brown:

"Owning our story can be hard, but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky, but not nearly as dangerous as giving up on love and belonging and joy - the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light."

Perhaps something worth contemplating today.

Lyme Disease Testing Update & Tash's Brain Fade Moments: Episode 4

Hello Everyone!

Well, I have had my Lyme testing results emailed through to me, so I have a bit more of an idea as to whether or not I might have Lyme Disease. However, I am waiting to see my specialist on Wednesday to find out what someone who knows a lot more about these things than I do makes of my test results. Can I just say, that it is wonderful to have a doctor who knows much more about a number of things relating to my health than I do. This is not often the case anymore! After I have seen my specialist, I will let you all know the outcome.

In the meantime, here is another of my brain fade moments to keep you entertained...


Tash's Brain Fade Moments: Episode 4

I had a huge day today, attending the baptism of a very special young lady this morning, followed by a celebration lunch afterwards. As such, I was very tired this evening. The perfect situation for a brain fade moment.

I struggle with photosensitivity. Artificial lighting such as fluorescent or LED lighting is particularly draining and difficult for me at the best of times. I have the brightness on my laptop, TV & phone turned right down.

This evening my housemates had the bright overhead lights in the lounge room turned on. I was struggling to cope as I ate dinner, however I didn't want to take my food & meds upstairs and miss out on the latest episode of 'Suits' (such a great show!). So, I put on my sunglasses, as I sometimes do.

Having put on my sunglasses, I picked up my fork and collected a mouthful of food with it, ready to recommence the eating of my meal. However, with the fork halfway up to my face, I suddenly stopped.
Lifting that forkful of food, the thought had come into my mind, "can I actually still get the fork into my mouth with my sunglasses on? Or will I have to take them off to be able to eat my dinner?"

Thankfully, it only took me a second to work out that yes, I would be able to get that forkful of food into my mouth. Even while wearing sunglasses.



...and here's a little bonus brain fade for you: I managed to put on a second bra this morning, immediately after putting on the first one. Not sure how long it would have taken me to realise what I had done if I hadn't looked in the mirror at that moment...

Caribbean Pink Fundraiser Candle Announcement!

         

This custom made candle by Ancient Light will be available until the end of September in TWO exquisite fragrances:


- Brazilian Waters 
- or the more subtle, Sweet Lemongrass.

Each hand made candle costs just $20! (+postage)







These candles have 200gms of wax. They contain natural soy wax made from soy beans that have not been genetically modified. They contain an un-bleached lead free cotton wick. Each candle will burn for approx. 50 hours, and is perfectly suited to a medium sized room like a bedroom, bathroom, office or kitchen. They will, however, make a beautiful addition to any room.

In order to save on postage, encourage you friends and family to start their Christmas shopping early, and have all of your candles delivered to the one location. For those of you in Melbourne, candles can be delivered to & collected from, my house in Ringwood. Supporters in Adelaide might like to collect their candles from Ancient Light directly.

Our aim is to sell 100 candles during September. That's just over 3 candles per day. Can you help us reach our target?

Orders can be placed through the
Caribbean Pink or Ancient Light Facebook Pages
www.facebook.com/RoomRefreshingService
www.facebook.com/AncientLightcandles

By emailing me at:
caribbeanpink.natasha@gmail.com

Or by contacting either Allison of Ancient Light, or myself on:
Allison: 0407 088 636
Natasha: 0412 086 456

Please share with all of your family & friends, and help us to change the lives of people with serious long term illness, one room at a time.