4 things I wish I'd done differently with Lyme...

This is sort of a continuation of the theme from my last post. Whereas there it was about things I wish I'd known, this is more looking at a few key things that I would have done differently...


Better Prevention and awareness



4 years ago I was only vaguely aware of lyme disease. I had no clue about how it was transmitted or what the symptoms were. I did a lot of walking in the bush (forest) back then but I never took any precautions in terms of the clothes I wore, etc. So things I would do differently if spending time in forests or other tick prone areas are:

- Wearing appropriate clothing (shoes/boots in place of sandles, long sleeve shirts and trousers in place of t-shirts and shorts)

- Using effective insect repellent (such as one containing deet)

- Avoid walking through high grass or bashing through leafy areas

- Check myself (and my family) daily for ticks or rashes

- Check my dog daily for ticks and make sure he has an combined anti tick/flea treatment


Go to the doctor sooner



I got sick in late May but it wasn't until late July that I went to the doctor. Initially it seemed like a flu and then the symtoms were so weird and varied that, for some reason, I decided to try and ride them out hoping they would come right by themselves. This was definitely not the right thing to do!

I was very lucky in that when I did eventually go to the doctor it was only a matter of a couple of weeks before I was in the hospital and getting treated. I fully appreciate how fortunate I was in this regard (for many, many people it's a nightmare to try and get treated).

So what would I do differently? Go to the doctor much, much sooner. I really feel that if I had further delayed going to the doctor or hospital it's unlikely I would have made a full recovery as the severity and frequency of my problems was exploding just when I was diagnosed.


Think holistically (sooner)



I needed the antibiotics to recover but I wasn't able to recover by solely relying on the antibiotics.

It took nutrition, alternative treatment, supplements, visualization, among other things. My doctors in the hospital rubbished these alternative approaches to healing. For them it was at best a waste of money. But it wasn't until I began exploring some of these options that my symptoms began to fade and I slowly began to reclaim my health.


Take it easy!!!



When I was first undergoing treatment I had the idea that Lyme disease was not that serious and that I should be back at work. Not only back at work but back studying (I was doing some extramural study) and doing the other day to day things that I was preoccupied with prior to lyme.

Rather than try and rush back into my pre-lyme busyness, I should have just tried to relax and focus on getting my health right. And just to give myself more of a break rather than continually pushing myself to achieve things when I was still trying to recover.

Drugs and time...

In my last post I wrote that the three things that I believe enabled me to overcome late stage Lyme disease were:
- the antibiotic treatment
- minimizing stress
- time

In the last post I delved into the subject of minimizing stress. It wasn't until I was able to reduce stress, especially nutritional stress, that my recovery kicked into top gear.

But without antibiotics and without allowing sufficient time things would have been different.

Antibiotics



I was very lucky to be living in the Netherlands when I became sick with Lyme disease. I was stupid when I first started getting sick as I assumed it was something that would come right by itself. So I put off going to the doctor. For months. When I finally got around to going to the doctor I was very quickly referred to a neurologist and within a matter of a week or two I was in the hospital starting IV antibiotic treatment.

In those last few weeks before I began treatment the range, severity and frequency of the problems I was experiencing started skyrocketing.



For example I when it came to issues with my vision the problems initially happened about once every two weeks and, although disconcerting, were not that severe. By the time I was diagnosed I was losing my vision 5 or 6 times a day and the severity of the 'attacks' were getting worse and worse. Once I started the antibiotics my problems stabilized.

Herx reactions aside all of my problems, aside from the insomnia, subsided a month or so after starting antibiotics. By the way a Herx reaction is a common reaction that can occur when the borrelia bacteria die off from the antibiotics. Basically it means you feel a helluva lot worse before you feel better. It's good to know about this in advance otherwise you may feel the antibiotics aren't working and become discouraged.


Time



By the time I'd finished my 3 week course of IV antibiotics most of my Lyme disease symptoms were vastly improved. However a few such as insomnia and nerve pain in my feet persisted for months or, in the case of insomnia, years. The recovery was definitely not linear - it was very much a case of 3 steps forward, 2 steps back. Although progress was very slow, and very up and down, gradually over time I improved. I found ways, especially through nutrition, to maximize my energy.

And I began to accept and understand that rest and taking things easy was vital. I wanted to work, I wanted to be productive but it was only when I consciously allowed myself the time to really take it easy and focus on recovery that I began to sleep consistently well again.



- If you think you might have Lyme disease go see a doctor!!!!
If you're feeling sick and experiencing 'weird' symptoms do not ignore it like I did!!! Go to your doctor. It's much, much easier to treat Lyme disease and to make a full recovery if you catch it in the early stages.

Be proactive in requesting a test for Lyme disease. I appreciate I am extremely lucky to live in the Netherlands where Lyme disease is recognized and treated. In some countries it is much harder to get diagnosed and treated. The Lyme Disease forum at MD junction has some good info on 'Lyme literate doctors' in the US and other countries:

Don't stress with the ups and downs
At least in my experience, full recovery took a long time and the recovery process was very up and down. It was only when I was able to accept these ups and downs and not get (overly) stressed by them that I could really make progress towards a complete recovery.

Eat well, exercise and take steps to minimize stress
I talk about this in my post on minimizing stress.

Stress........

Stress - what is it, how did I minimize it, how did that help my recovery....

The three things that had the biggest positive impact on my recovery from late stage lyme disease were:
- the antibiotic treatment
- minimizing stress
- time

In this post I want to talk about minimizing stress.



A couple of years ago when I thought of stress I had in my mind a picture like that above. I saw stress as an unpleasant feeling that could be brought on by too much work pressure, money worries, relationship problems, etc. To be honest I never really gave stress that much thought and never thought I suffered from it.

My view now on what constitutes stress is completely different. Looking back, stress was a major inhibitor for my recovery from Lyme disease. And it was also something that held me back in the decades prior to getting sick with Lyme.

I see the following points as the main forms of stress I needed to overcome to recover from Lyme disease:

- Physical stress
I see this as the stress my body was under in response to the Lyme bacteria and to the antibiotics I was being treated with.


- Nutritional stress
When I first got sick I wasn't paying much attention to my diet. I was eating a fair bit of processed food, sugary food and drink, alcohol and cafine. Dealing with this and trying to extract nutrients from this food was putting my body under stress.


- Sleep stress
My worst Lyme disease problem was insomnia. For two years it felt like I had lost the ability to sleep. Often insomnia is caused by stress but for many people with lyme disease it's the other way around.



- Work stress
Now we're getting into the types of problems people typically associate with stress.


- Life stress!
Most days, due to lack of sleep and pain, just getting through the day was a struggle.

What I now realise is that these stress types were reinforcing each other. I wasn't sleeping so I was taking extra caffeine and sugar to get by at work. This led to more sleep stress. Because I wasn't sleeping I was getting stressed out by trivial problems at work. This work stress was adding to my sleeping problems. And so on, and so on, and so on..... I found it a vicious cycle that was extremely hard to break. And my recovery from Lyme disease didn't really kick into top gear until I was able to break it.



What worked for me was to focus on what I could do to minimise each of the stress types I was experiencing.

For physical stress I found acupuncture helped a lot. I drank lots of water. I took probiotics and natural remedies such as cats claw to help improve my immune system. I made a real effort to consistently exercise. Initially just getting out of the house and walking around the block was a real effort but over time it got easier.

For - Nutritional stress I completely overhauled my diet. You can read more about the details in some of my other posts. I cut out processed food and other high glycemic index foods such as white bread, white rice and pasta. I introduced more vegetables and legumes into my diet.

- Sleep stress I found natural sleep aids Melatonin and Valerian helped a lot. I did a mindfulness course and learned about and used meditation, yoga and other techniques such as body scanning. I also found exercise (especially weight training) helped a lot in terms of improving sleep quality so I put a real priority on exercising.

- Work stress and life stress I found that as the other stresses in my decreased then my work stress and general life stress also decreased. Things that seemed like unsolvable issues when I was getting by on 2 hours sleep a night could be easily resolved with the presence of mind and energy I had when I was sleeping 5 or 6 hours a night.

It didn't happen overnight but over a period of months the vicious stress cycle slowed down and then reversed turning into a positive reinforcing cycle. As I ate better I experienced less nutritional stress therefore I slept better and could function better at work thus having less work related stress. I didn't need junk food and caffeine to get through the day and, as I could see the benefits, it was a no-brainer to stick with my dietary regimen.

The breakthrough for me was in August 2012, exactly 2 years after I was diagnosed with late stage lyme disease. After that I began to sleep consistently well and the rate of my recovery skyrocketed. It's now 7 months later and things are still going great. I actually feel much less stressed and much more productive and confident than what I did prior to getting sick.

Coping with insomnia

I had many painful symptoms when I was suffering from Lyme disease; loss of vision, arthritis, nerve pain, etc, etc. The worst and most persistent problem was insomnia. For more than two years I battled terrible insomnia. In this post I share what worked for me in dealing with it and overcoming it.

Initially my sleep problems were due to pain. I was having bouts of nerve or bone pain every couple of minutes and these were so severe that there was no possibility of sleeping through them. The first month of so after I started antibiotic treatment was the worst. There were some nights when I didn't sleep at all. Not a minute. There were a lot of nights when I was getting by on 20 minutes sleep a night. For a month or so I never got more than 2 hours sleep in a night.

My coping mechanism at that stage was all about survival. I was on a whole smorgasbord of pain and sleep medication. I used to watch comedy on TV in the wee hours when everyone was asleep. At that time I'd often end up on the floor in fits of laughter - laughing was a pleasant side effect of having 2000mg of Gabapentin coupled with valium :-)

Luckily this horrendous period only lasted a month or two and after that the pain diminished fast. After a few months I was able to stop completely with the pain medication. I had stopped months earlier with the sleep medication. I was, along with my doctor, concerned about the possibility for becoming dependent on it. However even though the pain had largely gone, my problems with sleeping persisted for another 18 months. I tried many, many things in that time. Here is what worked for me:

Nutrition Cutting out sugars, processed foods and alcohol and introducing more fruit and vegetables into my diet. See my other posts on nutrition for more details.

Acupuncture: I had my first acupuncture session after I'd had 6 weeks or so of almost zero sleep. I was desperate and felt on the edge of losing my sanity. The night after my first acupuncture treatment I slept almost 6 hours! Winning the lottery wouldn't have made me happier than that sleep! After that I continued acupuncture for the next 18 months often going twice per week. Generally, but not always, I slept reasonably well the night following a treatment. I had a few different acupuncture practitioners and found that the effectiveness of the treatment is very dependent on the practitioner. If it's not working for you try another practitioner. Don't give up on acupuncture straight away.

Natural sleep supplements Two that really helped me were Melatonin and Valerian. Generally I would not take these together. I found it worked best to have Melatonin each night for a few weeks and then switch to Valerian. Over time the effectiveness of them would wear off but by cycling them in this manner I could maximise their effect.

Taking it easy / minimising stress The problem for me during most of 2011 and 2012 was that insomnia was really the only problem I had. My pain was gone, my vision and hearing were OK. So I felt like I should be back at work and should be being productive. But working fulltime on 2 hours of sleep a night was just setting myself up for failure. Most days I would work but every now and again I would stay home and just take the pressure off. Initially I waited too long before taking one of these sick days but that wasn't the right option. My work and mental health were really under pressure. After a few months I started taking time off before the stress got too much. Generally one day off in 10 was enough to allow me to work effectively on the other 9 days.

Exercise It's hard to summon the willpower to exercise when you're not sleeping but for me it was vital in recovering. I built exercise into my day by cycling to and from work. I found a combination of aerobic exercise (cycling) and weight training had the most positive impact on my sleeping.

Meditation and mindfulness I did a mindfulness course and the techniques I learnt there (meditation, body scan, etc) helped. I found having the self-discipline to do these regularly was very hard particularly if I was not sleeping.

Laugh Those comedies I watched when I was at my worst were a lifesaver. Even though I wasn't sleeping the laughing and relaxation helped tremendously.

Stay positive I had some very dark times when I wondered if I would ever be able to sleep again. Especially when I had setbacks in my recovery. My recovery was not linear, sometimes I would sleep well for a few weeks and then terribly for a couple of weeks. It was hard to remain positive during those times but it was vitally important to see these setbacks as temporary.

me & lyme - an intro

A few years ago I got really sick and was diagnosed with late stage Lyme disease. The road to recovery was long but eventually, after 2.5 years, I was able to fully reclaim my health and become much fitter and healthier than before I got sick.

When my struggle with Lyme was at it's most intense I would go days without sleeping. During these times I would trawl through internet forums looking for help and inspiration from people who had overcome the disease. Sadly optimistic messages about late stage Lyme disease were very hard to find.

The reason I started this blog was to offer hope and tips for people who may find themselves in the same situation. Sometimes with Lyme you can feel that both your physical and mental health are being eroded away. But in the vast majority of cases a full recovery is possible.

In this blog I'll write about my experience with Lyme and what recovery strategies worked best for me.

If you're currently battling Lyme then I wish you all the best for a full an speedy recovery!

The photo below is me about 9 months after first getting sick - rigged up to all sorts of neurological monitoring gadgets to try and figure out what I could do about my chronic insomnia...