There are still many gaps in my memory, especially from this past year, but I distinctly remember feeling a little shocked when my integrative doctor told me I had lyme disease the 2nd week of December in 2014.
My husband drove me the 2 hours to my appointment because I couldn't drive due to the brain fog which would come on all of a sudden with no warning and sometimes lasting for hours. At that time, we had no idea how complex treating this disease was and the fight that we had before us.
After getting home, I immediately got on the internet and researched all I could on how people were treating. Since I kind of suspected lyme disease (or MS), I had already started researching before my appointment, but only a little.
After my doctor told me I had lyme, I spent every hour I was able looking up everything could on the subject and I immediately went on a no gluten, no dairy, no sugar diet. The diet did help with some neuro symptoms after being on it for 5 weeks. I know that people make fun of a patient choosing to rely on the internet for information over what a doctor would tell them, but had I not reasearched the internet, I might be in worse shape since the infectious disease doctor I went to see (after the integrative doc) told me that I didn't have lyme since it is rare in North Carolina and it didn't occur in the Fall(both false)
Even though I had trouble recalling words, couldn't do simple math and felt exhausted all the time, I had the presence of mind to understand most of what I was reading. I ordered Suffered Long Enough by Dr. Bill Rawls at the end of November before my doctor told me I had lyme. I ordered Why Can't I Get Better by Dr. Horowitz in December.
Even though I had trouble recalling words, couldn't do simple math and felt exhausted all the time, I had the presence of mind to understand most of what I was reading. I ordered Suffered Long Enough by Dr. Bill Rawls at the end of November before my doctor told me I had lyme. I ordered Why Can't I Get Better by Dr. Horowitz in December.
I started reading them as soon as they arrived.
Dr. Rawls book gave me hope since it addressed all disease and not just lyme.
I read Dr. H's book thinking that lyme was only treated with antibiotics and maybe a few herbs. It was a big book, but I was able to finish it. In addition to that book, I searched for how much treatment with a lyme literate doctor would cost. This was deeply upsetting to me as most doctors who treat lyme don't take insurance. I looked up the lyme doc in my state and estimated that the first visit, including labwork would most likely cost $3,000 to $5,000(out of pocket) for the first visit. I was also finding on the internet that people were taking 2-5 years to get well and it was costing $150,000 to $300,000 of their own money to do so.
Dr. Rawls book gave me hope since it addressed all disease and not just lyme.
I read Dr. H's book thinking that lyme was only treated with antibiotics and maybe a few herbs. It was a big book, but I was able to finish it. In addition to that book, I searched for how much treatment with a lyme literate doctor would cost. This was deeply upsetting to me as most doctors who treat lyme don't take insurance. I looked up the lyme doc in my state and estimated that the first visit, including labwork would most likely cost $3,000 to $5,000(out of pocket) for the first visit. I was also finding on the internet that people were taking 2-5 years to get well and it was costing $150,000 to $300,000 of their own money to do so.
All of this was happening right before Christmas last year and was so upsetting because I thought my only choice was to raid our retirement (and we're in our mid 50's) or not treat and end up in a nursing home(which would also cost a lot).
I remember nothing of last Christmas, except that I cheated on my new diet and ate 2 or 3 homemade ravioli that my husband made.
I can't remember when I read Suffered Long Enough, but it was the first book that gave me hope. I think it was also right before Christmas because after finding out he had a practice 5 hours away from me, I made an appointment to see him mid January.
Dr. Rawls healed from lyme using the Buhner protocol, which is made up of various herbs. Now, I have always taken supplements and even took hawthorn , which is an herb, but I really didn't believe that medicinal herbs would heal lyme.
In his book, Dr. Rawls mentioned Healing Lyme by Stephen Buhner, so I ordered that book too. It was too complex for me, but I did the best I could reading it. After reading those 2 books and meeting Dr. Rawls, we decided to give the Restore program (from Dr. Rawls' Vital Plan) a 4 month trial to see if I made progress. It was worth a try. You can read how I did each month by going back to the monthly updates.
It has not been easy, but it's been worth it.
I remember waking up and crying one Sunday last December because my fingers were starting to feel numb and I was losing the dexterity in my hands. My feet had already been numb and I had spidery, tingling sensations in them, as well. I had balance issues, brain fog, couldn't follow a conversation and many other symptoms I can't even remember.
Fast forward to today...
My energy is back - most days. Some days, like today, I am really tired and just have to rest.
Most days I can get quite a few things done and I can drive 30 minutes or so. I still haven't tried driving a long distance.
I have my mind back (most days) and can follow a conversation.
I have some of my motivation back...
For the first time in a long time I worked on a little creative project. Nothing fancy, but it felt good to make something. You can go HERE to see how I made them.
This Christmas I have a lot to be thankful for. For all of you who are just beginning your healing journey or still aren't feeling better yet, I would tell you to keep trying. Give whatever treatment you are on some time to work - I mean months, not weeks. If you would like to know more about Vital Plan's Restore program, you can find it HERE or join our Facebook group to learn more about it or to hear from those who have benefitted from being on the program.
What's next for me?
I still have a ways to go to be 100% or close to it. I'm having some Bartonella symptoms, so in January I'll be adding herbs to see if I can get rid of those. After that? Who knows. I'm not yet ready for a maintenance dose of herbs and will keep on the Restore Program because it's working.
My expectations have always been that I'd have to treat for a year and a half.
In another week or so I'll be reviewing several supplements from Vital Plan that may help you.
In the meantime, I hope that you'll have a blessed Christmas with your family and friends.
I hope today is a good day for you,
Pam
Here are my symptoms as of today: (the list is getting shorter!)
I feel good most days and symptoms are a minor annoyance
fatigue -it's about a 3 Some days it's only a 2. Have had 1 or 2 days of being so tired I spend half the day in bed.
Numbness, tingling in feet remain the same
swollen pads on bottom of feet near toes-has come back
dizziness/off balance- has been worse this past month.
difficulty finding words about a 2 when really tired
blurry eyes - a few days clear, then a few days blurry
urgency (3) - still a problem
light sensitivity (negligible)
noise sensitivity (3)
startles easily (2)
muscle pain -2
muscle weakness (3)
tremors - only when exposed to constant loud noises, but it's minor
tremors - only when exposed to constant loud noises, but it's minor
high pitch ringing in the ears/low pitch ringing - high pitch is more present, but it's not loud
not being able to follow directions (2-3) -comes and goes
98 +
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