....Not done yet....

HYPERBARIC OXYGEN THERAPY
Wow, where do I begin?!
Since my last blog post I have spent the winter months primarily in bed, battling symptoms mostly affecting my brain, including severe light sensitivity, headaches, difficulty with thinking, dizziness, memory loss and exhaustion.
The naturopathic herbalist tried in vain to treat the bacteria as it arose, I would barely be recovered when I would get knocked down again.  At one point I was taking 4 killer pills every two hours around the clock for a few days as it seemed the bacteria was growing at a faster rate than we were treating it.  This did not seem like a long-term solution, also financially as the killer pills alone are $4-8 each.  Through this herbalist I had met another patient with Lyme named Jamie.  He since returned to Edmonton, where he discovered a clinic that treated Lyme patients using primarily Hyperbaric Oxygen Therapy.  He did a lot of research about this therapy in the treatment of Lyme and encouraged me to do the same as he was preparing to try this avenue of treatment.  It turns out that the Lyme spirochete are anaerobic in nature, meaning that they can't survive in a high oxygen environment.  Hyperbaric Oxygen is pure oxygen delivered in a high pressure tank, allowing it to soak through every tissue and organ in the human body.  This means the bacteria, wherever they are still hiding, are unable to escape and unable to protect themselves as the oxygen can break through the protective layer (biofilm) that they surround themselves in to hide from conventional treatments and the immune system.  The plan is to do Hyperbaric Oxygen Therapy every day (so as not to give the bacteria any chance to reproduce) for two life cycles of the Lyme.  A life cycle is thought to be between two to four weeks, hence an 8-9 week treatment period.  Daily treatment is 1.5 hours in the chamber, and 5 hours every two weeks to see what reaction my body will have and help in determining what kind of bacteria load is left.

Two of the Hyperbaric Chambers

APOTHEC WELLNESS CLINIC
Thankfully the Hyperbaric Clinic has teamed with the Apothec Wellness Clinic.  This means that the many other aspects of being chronically ill are also investigated and addressed.  I spend approximately 7-8 hours a day in the clinic doing various therapies in addition to the Hyperbaric Oxygen as part of a comprehensive treatment plan that will continue for the next few years after I am done the intensive therapy here in Edmonton and return home. I am currently in my 6th week of treatment and have experienced many ups and downs in my symptoms during this time, some as extreme as temporary paralysis and dangerously low blood pressure.  But I am confident that this treatment plan is able to cover some of the aspects of disease that have been previously overlooked, taking into consideration my overall wellness, not just working to kill the bacteria.

TESTING
I must say I was a little alarmed when I received my test results back from Armin Labs in Germany.  Having previously received a negative Canadian test for Lyme (Elisa), and a barely positive test from IgeneX Lab in California when my symptoms were at their worst, I wasn't expecting this test to show much.  Especially after having completed three years of intense treatments, both IV and oral antibiotics and a year of herbal anti-microbials, I was assuming most of the bacteria had been eradicated and possibly we were missing something else.  It is now quite clear what we were missing.

My immune system is almost non-existent, so I have no defenses to fight any bacteria, parasites, viruses or fungus that are left after these treatments, giving them ample opportunity to reproduce and re-immerge the minute I discontinue or lower any of the heavy killer methods.
Here are my test results.  Every co-infection I tested for was positive, and the two I didn't test for I have been clinically diagnosed with previously.  The lab is able to test for antibodies and active infection.  Each of the infections below are currently active:

Borrelia (Lyme) Full Antigen - positive result >3                     My result: 20
Borrelia (Lyme) OSP-Mix - positive result >3                          My result: 17
Borrellia burgdorferi seraspot IgM                                            My result: positive
Borrelia SeraSpot OspC                                                             My result: positive
Ehrlichia and Anaplasma - 2-3 weak positive                           My result: 2
Chlamydia pneumonia  - >3 positive                                         My result: 4
EBV Lytic (Epstein Barr Virus or Mono) - >3 positive             My result: 13
EBV Latent - >3 positive                                                           My result: 22
Coxsackie Virus                                                                         My reuslt: positive
Bartonella - untested but previously clinically diagnosed
Babesia - untested but previously clinically diagnosed

I also tested positive for Candida overgrowth, and have an immune response (meaning I am intolerant) to Gluten, Dairy and Eggs.

I decided against testing for more viruses, bacteria and parasites as either way I am infected with each of these and the treatment remains the same whether my load is actually larger than what we have already found or not.

CD 57 (Immune marker) - Reference range 100-360                My result: 18
The result of the CD57 cell count indicates chronic immune suppression, which can be caused by Borrelia burgdorferi or other bacteria like Chlamydia pneumonae or Mychoplasma pneumoniae.
The plan for my immune system is to work very hard over the next few months and years at restoring it.  It is hoped when I re-test the CD 57 in 6 months time I will have a result of 60 which will help prevent me from gathering new viruses and bacteria, and in a year hopefully be at 100 which will mean my body is actually able to fight and resist infection on it's own.

I will write more on treatment in a later post.  I need to head to the clinic now....

Here is a link to a song that has touched my heart lately.  One of the many that speak of trusting in God when we don't understand His plan or know what is ahead.  He will work all things for our good, and I hold onto that promise.  I feel His nearness here and trust that He is also taking care of the family I have left behind in Ontario.  God grant me the grace to accept the things I cannot change, courage to continue to work at changing the things I can, and an extra measure of wisdom to know and accept the difference.....

https://www.youtube.com/watch?v=n_aVFVveJNs

Happy to spend two precious days with my mum when she visited!! Luvya ma!!

Keeping Lyme at Bay

HAPPY NEW YEAR!! It has been awhile since I blogged last. And what a year 2016 has been....

I decided in May of 2016 to try a different approach to treatment and management of this disease. I felt like I had exhausted my antibiotic options.  Although the oral and IV antibiotics had brought me quite far, helped me to walk and regain my strength and energy again, they completely destroyed my immune system in the process.  At this point, modern medicine is not able to completely eradicate the Lyme and associated bacteria from our bodies.  With a severely disabled immune system from years of disease and antibiotics, and traces of bacteria remaining in my body, it was only a matter of time before the bacteria multiplied and symptoms began returning.  I have come to realize that the key to managing this disease is just that, management.  It appears to be impossible to overcome it completely but it can be managed effectively by keeping my immune system strong, and actively killing the bacteria with herbal antibiotics during flare-ups.

After switching to a herbal protocol in May, I went further downhill for the next two months as my body and the herbals fought against the bacteria again.  I was exhausted and so sick of fighting, but I was told to remain strong, stick to the protocol and I would emerge eventually in a better state.  So I endured and by the 8th week of treatment it seemed that a switch flipped in my body.  My body was stronger and I was beginning to feel healthy and energetic - the best I have felt in years! So I slowly lowered my dosage of herbals, and continued to rebuild my immune system with quality vitamins, supplements, probiotics and a healthy diet (processed food, dairy, sugar and gmo gluten free).  As my body got stronger, I slowly introduced physiotherapy and tiny amounts of cardio again.  I felt alive and rebuilding my body finally felt possible once more!  I was able to enjoy the summer with my children and husband for the first time in 5 years! I took my kids body-boarding in the lake, and tented with them twice over the summer. We did swimming lessons, sold our home and bought a property with a few acres of land.  It seemed that health and 'normal' living was possible again!

I bought a bike! And I can ride it again!!

News of my amazing improvement spread and people were calling and emailing looking for the secret to my recovery.  My brother came to stay with us for 7 weeks to receive the herbal treatment that I was on.  A friend from Winnipeg also came and we made trips back and forth to Toronto to supply them with all the necessary supplements and herbals to treat their Lyme also.  In the busyness of  building a new home, joining in the kids school programs and outings, special diets, treatment protocols, trips to the naturopath, helping others and taking care of my household and family unassisted, I pushed my body beyond it's limits.  I was surprised to notice that even when I overdid things, I recovered much faster than before, I no longer became fatigued and the pain which I felt in my muscles when I pushed them seemed to recover over a few days if I rested.  So I continued to push my body and mind, enjoying the freedom of living a more regular life and not considering the potential consequences. There was so much living to do - so much I had to catch up on, so much I had missed that I was keen to enjoy and join in again!

My brother Del and I 

By the fall of 2016 I had enjoyed four precious months of symptom-free living.  The natural doctor I was seeing had not found any traces of Lyme in my system for those months and as I was his first Lyme patient, he thought it safe to take me off my bacteria killing herbals.  I was only taking them once a day at this point.  Around the same time, I decided to take up swimming again.  My visitors had left and it was time to get into shape.  One week after stopping my herbals completely, my symptoms had returned - pain in my legs, exhaustion and my ribs consistently were popping out of place.  I saw the chiropractor 4 times that week, as quickly as he put my ribs in place they would go out again.  I remembered that the same thing happened before I initially began my Lyme treatment in 2011.  It apppeared the bacteria had returned - and indeed, the herbalist found it with his test. In addition to the returned Lyme, I have crashed my adrenals through years of chronic disease and stress.

So, I am back on heavy herbal and supportive supplement treatment again, and so disappointed to have my health taken away again. The cost is high for the treatment adding further stress.  We are currently spending/borrowing about $800 per week, for a total of $20,000 so far this year.  After a month in bed, I am up and about again and determined to do things differently this time.

MY PLAN

Boost Immune System:
To boost my immune system I use PureTrim products.  They are pure and cold-pressed, easily absorbed by the body and tested by my natural doctor for quality.  I take:
2 TBSP 2X day of Daily Complete (multi-vitamin)
1 TBSP 2X day of Harmony (for energy),
1 cap Synergy Defence (pre-biotic, pro-biotic, digestive aide) before meals
1 cap 2X day of Female Balance to regulate my hormones
2-3 caps Experience (colon cleanse) with 2-4 cups of water before bed
1/2 Puretrim meal replacement shake - for afternoon snack
PureGardens cream (mixed with silver) for my skin

You can buy PureTrim products here and receive free shipping by signing up for autoship:

https://friends.puretrim.com/

Kill bacteria:
Custom herbal bacteria killers.  I also like DoTerra oils
Fungus killers - the Lyme cloaks itself in fungus so fungus killers are important to expose the Lyme before killing it.

Detox:
Colon Cleanse - Experience - PureTrim  (see above)
Cleanse blood
LIV52 - liver cleanse - 2 pills 1X day at 1pm
Kidney cleanse - I use Zi Yin Bu Shen Wan (herbal chinese) 8 pills 1X day
Infrared Sauna - every second day
Ozone therapy - local naturopath

Probiotics:
I take Dr Ohirra (green box) probiotics in combination with Puretrim's Harmony

Digestive Aides:
Synergy Defense - PureTrim (see above)
Good digestive enzyme
Fermented foods are also amazing for pro and prebiotics and digestive enzymes

Adrenal Recover:
Stress supplement - 5-HTP NOW brand - 200mg 3X daily
Adrenal support - ADRENAsart - Lorna Vanderhaeghe brand - 2 caps breakfast and lunch
Stay below my daily energy limit - no pushing myself!
Balance hormones - Female Balance - PureTrim (see above)

Physiotherapy:
Slowly increase physiotherapy exercises - very careful not to push my body

Say NO!!:
Taking care of my house and home is all I am able to do right now.  I will be getting help with the housework bi-weekly and am teaching my children to assist with household chores.

I really think the key to keeping the Lyme at bay is to become a hostile host for the bacteria.  That means maintaining a healthy immune system (80% based in the gut) and recovering my physical strength.  I will also remain on low dose herbals for the remainder of my life if need be to avoid another relapse.

Another Sibling with Lyme

So.... seems Lyme has quite an ability to lay dormant in our bodies, only to erupt when we least expect it and cause severely debilitating symptoms that will not resolve despite our determination to will them away, our misguided trust in the medical doctors who diagnose us with 'anything but Lyme', copious amounts of bloodwork, visits to numerous specialists, various medical tests or changes to our diet and living habits.  It now seems obvious to our family that this is very possible, because two of my siblings live in Australia, and I in Canada, it seems most likely that we contracted the disease as youngsters while living together (in a likely endemic area).

My brother Del is also very sick with Lyme.  He has had to quit his job as a youth psychologist due to the severity of his neurological symptoms.  He has been given a clinical diagnosis by an Australian doctor and has begun antibiotic treatment.  Treatments in Australia are also limited, as doctors risk their licenses to help patients and cannot afford the risks of prescribing long-term antibiotic treatment.

If you are able to help our family support Del with the financial burden of his out-of-pocket treatment, please follow the link below: Any amount is appreciated, if we all pull together we can make a difference in the lives of this young family:
http://delsfarm.weebly.com/whats-the-latest-news

May is Lyme Disease awareness month and our family is quite aware of the effects of this disease. My sister is slowly recovering with the assistance of essential oils, bioresonance therapy, diet and lifestyle change and supportive supplementation.  I am working on healing my gut and restoring my immune system and recently attempting to recover from a torn ACL in my knee, which is a result of the weakness I have sustained in my joints due to the Lyme being active in my body for so long without treatment.

There are so many issues and controversy surrounding Lyme Disease - beginning with flaws in surveillance of ticks, under-reported number of cases of people being infected, inaccurate blood testing, uneducated doctors and specialists, patients being denied treatment, inadequate and insufficient length of treatment. There is currently a conference being held in Ottawa Ontario to develop a new Federal Lyme framework.  We are hoping the outcomes of this conference will be positive and result in serious changes to how Lyme is identified and treated.  I have heard countless stories, all similar, of people struggling to survive this disease, let alone the medical system that is ostracizing them! Time for a change? YOU BET!!

Meanwhile, our prayers and thoughts are with those struggling to get the help they need so that they can also work towards being able to function and participate in daily living again.  Please reach out to me if you need support and help.  I am determined to do more to help others who are suffering as my family has.

What to do when you suspect Lyme

There have been a number of people approach me lately with suspicions that they or their loved one may be suffering from un-diagnosed Lyme Disease.
I decided to write a post on the steps to take if you suspect that someone you know may have contracted Lyme.

It is important to catch Lyme Disease in the earliest stages, within the first few weeks of infection. Often Lyme is missed at this stage because it so much mimics a regular flu and less than 50% of those infected with Lyme even recall a tick bite, let alone a rash!  There is much mis-information from public health agencies regarding infection, which further limits the number of people seeking medical help on suspicion of infection.  Only certain species of ticks are being tested for Lyme, although it is very likely that all ticks carry the infection, and it is even suspected that mosquitoes may also transmit the disease.

It is advisable, if you have been bitten by a tick and it is not easily brushed off of your body (meaning that it has been feeding on you for a while) and you experience a rash of any kind or feel unwell, that you contact your family doctor and request (or demand if they refuse your request) three-four weeks of oral antibiotics (usually Doxycycline).  Although the doctor may think this excessive, the alternative is to treat with a two week course of antibiotics (which is not sufficient to completely eradicate the bacteria at this stage) and risk being struck-down at a later date with late stage Lyme Disease.  If you have a strong immune system, the Lyme bacteria may remain dormant in your body for many years after initial infection.  The symptoms of late stage Lyme Disease may come on gradually or suddenly after an immune system compromise (illness, accident, stress).  It is much harder to diagnose at this stage, and much more difficult to treat.  It consists of much more severe symptoms and, although it may go into remission, is not considered curable.

A BULLS-EYE RASH IN ITSELF IS CONCLUSIVE OF INFECTION WITH LYME DISEASE.  IF YOU OR SOMEONE YOU LOVE HAS A RASH AFTER A TICK BITE, OR A POSSIBLE TICK BITE YOU MUST RECEIVE 3-4 WEEKS OF ANTIBIOTIC TREATMENT IMMEDIATELY.

You must also be aware that the testing method currently relied in Canada as an initial screening for Lyme Disease is a blood test that uses the ELISA method.  According to the International Lyme and Associated Diseases Society (ILADS) "The elisa screening test is unreliable. The test misses 35% of culture proven Lyme disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity". - See more at: http://www.ilads.org/lyme/about-lyme.php#sthash.jSJwyuSi.dpuf

Lyme disease has been called the great imitator.  It should always be considered as an alternative diagnosis of Fibromyalgia, Chronic Fatigue Syndrome as well as rheumatologic and neurologic conditions and any other difficult-to-diagnose multi-system illness.

So what to do if you have the symptoms of late stage Lyme Disease?

HOROWITZ QUESTIONAIRE  
Fill out the following quiz to assess the likelihood of Lyme:

http://lymeontario.com/wp-content/uploads/2015/03/Horowitz-Questionnaire.pdf

BLOODWORK 
If you score over 45, it would be wise to get bloodwork done at the IgeneX lab in California, as they specialize in Lyme testing and have developed tests that are more accurate than anything that is done in Canada.

http://www.igenex.com/Website/

You will have to fill out the bloodwork request form, and get your family doctor to sign it:

http://www.igenex.com/files/PATIENT_TEST_REQUEST_FORM.pdf

Then find a local lab to take the bloodwork (following the instructions on the IgeneX website for the specific tests that you are ordering)  I recommend that you do the Complete Lyme Panel – which is #6050

LYME LITERATE DOCTOR
If you scored high on the Horowitz questionnaire, you may like to consider beginning the process of finding a Lyme Literate Medical professional in your area.  When choosing a Lyme Doctor, you might want to consider the exchange rate (which will affect the cost of US treatments) as well as any medical insurance coverage that you may have (which may be covered if treated by a Lyme Literate Naturopathic Doctor – LLND - within Canada).  You will also want a physician that is ILADS (International Lyme and Associated Diseases Society) trained, as they follow the most current Lyme treatment protocols.  I can personally recommend Dr Maureen McShane in Plattsburgh NY, and Dr Eric Chan in Richmond, BC.  You can look on this website for the recommended list of LLMD’s closest to where you live:

http://ilads.org/ilads_media/physician-referral/