Lyme Life Update

Looks like I’m overdue an explanation as to how the hell I’m doing!  So many of you ask when will I be better, yet the answer is still not cut and dry.  Which means I struggle with sharing.  Following I try to answer the most FAQ:

How was Mexico?

A little over a month ago, I learned that I have a Deep Vein Thrombosis in my right leg, which set my medical team into panic mode and necessitated a last-minute trip to a clinic in Mexico for further diagnosis and treatment. 

My doctor says if I had stayed in the U.S. for treatment, I would have needed to be on a continuous-drip IV, and I would have been taking drugs that would have made my Lyme flare severely.  My MD “took a leap of faith” and recommended I leave the country and pursue treatment instead through the Naturopathic doctor that is also a Lyme specialist.

So I took a leap of faith with her.

The trip to Mexico was surreal, stressful, and significant.    First of all, I thought I might die from the blood clot before I got treatment!  Then we had our vehicle searched at the border, while we stood next to at least 6 soldiers with assault rifles.  We spent the next three days in open treatment rooms, surrounded by (mostly) cancer patients, listening to stories from the animated van driver (who cured his cancer using Borax and baking soda) and the doctor himself. 

The Naturopath I was there to see actually owns the clinic with a Mexican MD.  They offer fully integrative medicine, meaning they will use both natural and synthetic drugs to cure disease, with an emphasis on natural.  He is genius, yet also eccentric, and I have trouble following our conversations because he bounces from topic to topic.

What treatment did you receive?

Besides my sitting on a special magnetic grounding chair all day, they had me hooked up to IV’s that ran a special magnesium mixture and hydrogen peroxide.  He ran some other functional tests to determine my adrenal/thyroid function, and, of course, he determined the plan of action for the DVT. 

The most interesting test was the Live Blood Analysis.  He pricked my finger and put a drop of blood on a slide and looked at it under a microscope, which we could see on a television screen.  It was horrifyingly fascinating.  My blood looked very sick – instead of round, separate red blood cells, mine were all stuck together like caterpillars!  It was very easy to see how I could be dealing with a blood clot. 

He zoomed around in there for a while, and was able to see a few big invaders, and others that were small and squiggly.  It was a face-to-face introduction to The Enemy, and sobering.

Sick blood

After three days, I returned home and have been giving myself Heparin shots and taking Nattokinase to dissolve the blood clot.  This past week, I had an ultrasound to check it, and it has reduced by over 50%!  On the right track.

Because of what was seen during the live blood analysis, I’ve also been completing several other tests, for mold mycotoxins and parasites.  Apparently a Lyme infection causes the immune system to be compromised, and you just become a walking infection magnet.  The body doesn’t even fight back because it can’t even “see” the infections - they just do their damage!  In order to kill the Lyme, he feels you have to first clear the other infections. 

I still don’t have all the answers from those tests quite yet, or know what further treatment that might entail.  Yes, we are really looking forward to having the answers. 

When will you be well?

I have no guarantees that I will ever fully recover.  Most Lyme-literate experts these days agree that it cannot be fully eradicated once it’s gone to a chronic state, like mine has.  In other words, the best I can hope for is remission, and in order to stay in remission, I will need to continue with a lot of self-care and healthy living. 

Lyme patients will continue “treatment” in whatever form until they exhibit no symptoms for at least 3 months.  That seems to range from one year to ten plus, based on all the information I can gather from forums and groups treating both naturally and conventionally.  Really there is no knowing, considering many people say they are “cured” and then have a relapse months or years later.

What is your continued treatment like?

So far, I have been through seven months of treatment already – herbals and essential oils – and my infection load is down enough that I can tolerate it.  I am not always walking around with the brain fog, constant anxiety, and mega fatigue that plagued me for years.  My body is fighting back, and most days, I feel like ME again. 

The bad news is, in order to feel this good, I need to give myself two shots in the stomach and take a handful of pills three times a day – a good mix of vitamins and supplements that really do make my body work better.  I follow a strict diet – no gluten, caffeine, alcohol, processed sugar, almonds, seeds, pork, tomatoes, peppers, potatoes, or eggplant.  I should technically be Paleo and eliminate all grains in order to further lessen inflammation, but I just can’t handle it, plus all the above restrictions, with three other mouths to feed at my house.

Morning handful

I also still get weekly chiropractic adjustments, acupuncture, and reflexology.  I detox by laying in the sun or sauna several times a week and do restorative yoga poses daily.  I still sleep horribly at night, which means I need to nap in the afternoon to make it through the day.  I have more energy, but not enough so I can work out – the stamina is not there.  Muscle wasting and malabsorption have left me a mere 102 pounds! 

If I stop taking care of myself, almost immediately I go into a flare.  For me right now, a flare constitutes getting even less sleep than normal and becoming a walking panic attack, chronically introverted and easily overstimulated by sounds/people, and feeling pains in my back and legs and feet.  I hear constant ringing in my ears. When it is really bad, I won’t even answer my phone, and I don’t want to be “in public.”  I still flare at least once a month, and I dread it like nothing else.  

There was a point in all this when I felt so weak I didn’t even trust myself to carry my babies upstairs.  When I was so tired I would fall asleep before they did.  When my entire body was so tense inside it hurt – everywhere.  My toes would go numb and my arm would tingle, and my heart would beat hard inside my chest, even in the middle of the night.  When I had to go to the ER for emergency surgery.  When I ran a fever for 3 straight months!  When I was borderline suicidal because I felt totally alone in the world.  I didn’t know what to say to anyone, because I didn’t know what was wrong!  I felt like I was hurting my family as much as myself.

It has been hard for me to need this much maintenance just to make it through what I call “basic life.”  I miss “normal life,” where I felt capable and strong, where I could have dinner and drinks with friends without care, where I didn’t need to be so strict about everything just to hold it all together. 

But, this is my cross.  And where I’m from, the cross means hope and new life.  

Is there any good news?

Like I said above, at least I AM feeling better than I was!  It has taken some serious soul-searching to accept this new way of life.  I am working on resisting less and accepting more.  I can appreciate little things more deeply and feel God's presence more often.  I was broken, so I could be found.  Amazing Grace and all.

This makes me thankful for my cross and happy to bear it.

I don’t have all the answers and will continue working my new “job” – I sure do appreciate your support, whether it’s been prayers, calls, emails, help, or general understanding!  Thank you so much.

Love, Jill