While Kyle was in Ontario with me we went to Niagara Falls, this was around the time my muscle and joint pain went away and it was so amazing to experience that relief for the first time in a long time! Unfortunately this is also when I was experiencing intense and very painful pressure in my head from my body fighting the bacteria in my brain. I know you can't tell by the picture... but that's because I am accustomed to pushing through and smiling anyways.
I have now completed about two and a half months of heavy treatment and detoxing and am at a place now where I make progress with the Lyme for a while, to the point where all active bacteria is gone, as well as my Lyme symptoms, only to be set back when either we reduce the herbal antibiotic and fungus pills or my bonus disease flares (adenomyosis) which often makes perfect opportunity for the Lyme to reemerge and multiply again while I am run down. This is because there is no way to eradicate all Lyme bacteria eggs, only active bacteria, so it will lie in wait for the perfect conditions to reemerge. During the adenomyosis flares the fatigue is just relentless, the bacteria and fungus infections in my pelvic organs flare up and the pain gets so bad I spend most of those days, sometimes up to weeks, laying in bed or on the couch trying to survive recover.
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| Reading books before bed |
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| Out and about, running errands with my fam <3 |
I still experience rather severe symptoms in my brain off and on. My brain has a lot of damage from the bacteria (it was the organ that harboured the highest amount) and as a result I at times don't get sufficient amounts of oxygen to my brain so I frequently get terrible pressure in my brain and debilitating headaches that pain medication doesn't even touch. My ears also ring constantly, its low enough that when I'm talking I don't notice it much, but as soon as it's quiet I hear it and it can get very irritating, although I am beginning to just accept it and get used to it. At least it's not pain! This is likely a result of damage done to the inner ears or where you perceive sound in your brain since I experience the ringing even when the bacteria is gone.
On Tuesday of this week I had an appointment with one of my doctors, Dr. A, regarding the adenomyosis. After going over my symptoms and discussing my quality of life and pain levels he feels the best option at this point is to have a complete hysterectomy. Unfortunately it is past the point of trying other options to try slow down it's progression since the uterus has affected muscles surrounding it. He said my failed physiotherapy attempts proves this.The only way to try heal and strengthen those muscles is to remove whatever has set them off (the uterus and lyme bacteria). This explains why even when the Lyme bacteria is gone I still struggle to sit, stand or walk for very long. I have become very weak and my muscles fatigue quickly so physical exertion or pain in my uterus triggers muscle spasms in my pelvis that will extend from my core to down my legs. Dr. A is feeling that a hysterectomy is the best option for me and is optimistic about it helping me recover further. There are no guarantees, but he feels the chances are pretty good. He booked the surgery right away and it is scheduled for March 13th.
I have accepted that this has to happen, but at the same time I still have a hard time with it emotionally. It is so heartbreaking to give up the prospect of having more children in the future. Yet I am thankful that it's very possible this may help me recover better and give me some quality of life back. Since as it is now, I cannot even fully take care of the two children I have.
I have seen Dr. A over the last few years and he is the one who told me that an ultrasound was not necessary to look for a possible cause of my chronic pelvic pain and yesterday while looking me in the eyes (with a look of something that may have been remorse? maybe regret? definitely solemn) said he wished he could have done something like this to help me sooner... I took that as an apology. :) He also asked me how my Lyme disease treatment was going and wanted to hear an update. I have had some appointments with Dr. A in the past where I left in tears over him minimizing my pain and not trying harder to help me, but he has been one of the very few doctors who has never doubted my positive Lyme disease test from IGeneX. He was the one who sent me for testing in Canada when we suspected it, which of course came back negative because testing in Canada is not good enough.
It is always best to avoid surgery when possible when you have Lyme disease because your immune system is so important for keeping the bacteria at bay, and surgery will plummet your immune system. I have made online connections with others who have Lyme disease as well as adenomyosis and all those who have had hysterectomies say it was a turning point in their recovery. However, they also warn to prepare that it is very hard on your body and most had very long, difficult recoveries, some still being bed ridden at the typical six week healing period. Even with that sometimes being the case they all say they'd do it again because it helped that much in the long run. With my immune system not constantly being distracted and fighting the adenomyosis I will hopefully be able to recover further and keep the Lyme in remission. Ultimately, my healing is the Lord's decision.
A short verse I need to read often from an old hymn:
"With humble hope attend Thy will, and wait beneath Thy feet."
- Anne Steede, Dear Refuge Of My Weary Soul
So hard to do at times, when the battle goes on, and on, and on...
I didn't write much about my new treatment protocol. My friend in Ontario that I stayed with sees the same specialist for her Lyme disease and our treatment plans are nearly identical. She recently wrote a blog post with the treatment plan, so with having her permission I'm sharing the link below for those interested:
