My Open Letter to Doctors, Nurses and all Health Agencies about Lyme

I don't know if this letter will be given much credit, I am just an average individual who has been battling Chronic Lyme for 4 years.  ...

Tuesday, October 25, 2016

If it Challenges You, it Can Change You

They say "God laughs when we make plans" but they also say "God has better dreams for you than you could ever dream for yourself".  I certainly have accepted the first to be true and am starting to see/hope the second to be true.

The latest protocol of antibiotics has proven to be a bust.  Even with the week break between taking them, I started to get worse each week.  I stopped recovering when I was off them.  Fatigue increased, muscle weakness, further neurological, hormone imbalances, depression, and general fluy like feeling.  It was like facing lyme decline all over again.  I decided to tough it out because it is often hard to tell when it is herx reaction from bacteria kill off or just decline from illness.  My last blood test confirmed it for me and the doctor.  My body was not handling the drug well and my liver was certainly showing signs of challenge.  I had to stop the drug immediately.

I sat with that information for a while.  It was hard to know whether I was happy or sad about it.  There was a sense of relief that I could stop feeling so crappy.  I had wondered how I would last a year at this rate.  But then I wondered if my last chance to deal with the infection in my heart and head was lost.  But I like to think of it as a chance to regroup.  I need to regain the physical progress that I had made a few months ago.  I retained so much hope at that time.  I want to have that back.

I need to wait a month before I can try anything again.  I need to get my levels back to a healthy place with my blood tests and luckily I have seen a couple of new doctors that have more treatment options to try.  One is a Lyme specialist that has agreed to take me on despite the fact that they were not taking on new patients.  Another is working on a slightly different theory to deal with my remaining symptoms.  I am happy to still have options and very grateful to have som time to regain some health.  My slow deterioration and its similarity to the lyme decline was really wreaking havoc on my mental health, my hope and optimism.  I feel that coming back already.

It has been hard to update this blog partially because I was sick and weak, but also my neurological symptoms were a mess.  I am back to writing a little a day and after a few days, I have an update.  But, I really hope to start sharing more.  I have become part of a few groups and with the new doctors have learned so much more about this disease, health in general and many things we can be doing ourselves through this tough life we live.  Its hard on all of us. So hopefully I can share some simple, effective things we can be doing to make it easier...and trust me, I have tried it all and only plan to share what is tried and true.

So many times in this process I have had setbacks, But each time I seem to find something better as a result.  So I am very convinced that is what is happening now.  I am taking this month to find some balance, regain some health and find new focus for further healing.  But what I have decided to start doing more than looking ahead is to start living now.  So many times in this process and I see it all the time with other lyme patients, we look forward to the next solution, the results of what we are doing or for the Country to finally accept us as part of an epidemic, but none of those things are going to happen soon.  So I am starting to live now.  I want to start living life with the symptoms that exist, find happiness in each day regardless of how it could be perceived and know that no matter what kind of day I am having, it is better than before and better than what someone else might be experiencing.  Just writing that feels good.

So here's to more updates and info coming soon, to health and happiness for everyone and finding good in what may look bad...I'm on my way back.


Tuesday, October 4, 2016

The Anti in Antibiotics

After three years of battling this unknown illness, finally being diagnosed with Chronic Lyme, I was so relieved to not only be validated but to have a course of action to eradicate these "things" that had taken over every part of my body.  I didn't care what it took or how hard it was going to be, I would do it. I just wanted to be better and get on with my life.

The plan was to taper on to the five antibiotics for up to 3 years.  Yes, I know that seems like a lot but after 3 years the bacteria has morphed, developed protective biofilms and moved into all the nooks and crannies in ones system.  At this point you need the different types of antibiotics, you need the high potencies and you need to take them for a long period, just to even stand a chance of killing the Lyme.

People would say to me "my friend got Lyme and they took one antibiotic for a few weeks and are fine".  I heard that a lot and there is a lot of misunderstanding about Lyme vs. Chronic Lyme.  Getting diagnosed with Lyme early (typically within 6 months), usually knowing you were bitten (ironically, I did, so its even more sad that I went three years without diagnosis), or visiting a doctor that is inclined to be cautious with tick bites, often means you will get a short dose of antibiotics.  This can bring the infection under control early and avoid all long term effects that come when undiagnosed.  Not the case for me.

A few weeks into to my antibiotic protocol (4-5 antibiotics up to 3 years), I started to have trouble keeping the meds down.  A medical friend was quite worried about the long term effects of the protocol and started to seek out alternatives for me.  This resulted in me suspending my antibiotic treatment for a 4 month alternative treatment plan involving six modalities (three weeks at a clinic and 3 more months at home).  I found great results physically with this and homeopathic supplements, but still continued to suffer from most of the cognitive issues and some cardiac related ones as well.

While discussing my progress with the doctor that originally diagnosed me she was impressed with how my body was recovering physically.  She suggested I may be a good candidate for a strong antibiotic that well, let's say isn't mainstream, nor available in Canada, of course.  But they are finding great results with is cognitively, if your stomach can handle it.  It is really hard on your system, so it requires an even stricter diet than before and will wear down your system quickly.  As a result, they do what is called pulsing.  You take the antibiotic for 5 days then go off it for 4-7 days, depending on how you recover.  You have to be careful to continue detoxing and keep  things moving in your system.  You take a few new supplements to help with the antibiotics and then some different ones to help you recover on the off days.  I think my count is over 20 supplements right now.

When this was first proposed to me we agreed I would wait until my home treatment protocol (the 6 modalities) was over.  I wanted to know what was better with that treatment and have a better idea of what worked and what improved what. Some people are completely against the idea of using antibiotics and of course it would be great to avoid them...but my desperation to fully recover is too strong.   All of these factors seems a little ironic to me these days, because I have since been in contact with so many more Lyme patients and doctors around the world and if there is one thing I have learned it is this:

It is almost impossible to know what solves Lyme, what helps and what doesnt. Every Lyme patient is clawing and grasping as every possible solution to improve their situation even a minuscule amount. Some days you are certain something is working and could be convinced to give it up the next.  You can never be sure what is helping because you get a little bit better then worse, then better again.  You only know that you have come miles when you look back to months before.  And realize you have miles still to go. So you keep clawing and grasping taking on everything someone brings your way.

That I will continue to do, I am striving for full recovery and will stop at nothing less.

So I have been on the new meds for almost a month now.  The first week wore me out but didn't seems so bad.  I didn't realize that even with the pulsing (break in between) each week may increase in intensity.  My second week on, brought symptoms and herxes like I have never experienced before.    Intense hormonal reactions ( I won't go into detail - but wow), my eyesight, brain fog (crazy), loss of coordination, trouble sleeping, extreme fatigue and sick stomach.  I was able to see the naturopathic doctor that helped me balance things out a bit and decrease the reactions.  But at the same time she reminded me what a great sign this was.  It meant the drugs were working.  They were attaching the bacteria in places I was having trouble seeing any improvements.  And that is so motivating to me.  We have found a way to get at it where we haven't been able to before.  The hidden bastards have been found and they are not winning hide and seek anymore.

It strikes me that the next year is going to be quite a roller coaster ride but for the first time since being infected I have some semblance of when I might be sick and when I might have a few good days.  That feels like living again!

I was also told about a cream that contains a protein that Lyme patients lose in the process that iscrucial to good immune system health.  I am trying that one too.  I have spoken with two doctors in Toronto that were able to share some good further treatment options, and have become part of a nationwide group that has a doctor providing tips and direction to patients.  It is also a group that other doctors are encouraged to join to hear stories (good and bad).  They have created a massive drop box library of Lyme information.  I was originally encouraged to avoid Lyme groups because of the lack of credibility of information and instability of the people posting - but one doctor (who has also published a book after helping her some through Lyme) told me this one was different.  What an incredible resource.  I can't wait to share with you the one graphic I found that would have changed this whole thing for me...another blog.

I also have three pending doctors appointments, with doctors I have not seen yet.  One deals with cell  health, another is a Lyme specialist that was not taking on more patients for over a year due to Lyme challenges and the last is a new doctor covering for my family doctor (not the one that dismissed me).  So I will let you know what I find out.

I find it interesting to think back to the four months I was on the Utah protocol.  I was so eager to get to the end. Yet, when the end was near, I started to panic what would happen when I got there and not all was better.  I felt like all would be lost.  But I have since realized we can keep working on this, many little options are out there.  There is no one big solution.  It is slowly, over time building up your system to fight, while killing off the bacteria a little at a time.  I am so grateful for the Utah protocol because I feel it helped me recover physically with some of the best results I have seen in Lyme patients.  My physical mobility is so important to me for my mental health. I love to move and love to get outside, I can't imagine being able to recover without being able to do those two things.  So even when I am really sick, I still have a smile on my face.

Side note: Sorry for the lack of updates recently.  The antibiotics just don't allow me to think and write clearly.  I know you may find some of the details above a little confusing.  But thanks for understanding, it just feels really good to share with all of you again.