chronic lyme disease with a taste of nut
October 26th, I went to see Dr. W for my check-in. I already knew it would be a banner appointment because Dr. W had gone to the ILADS conference in mid-October and heard experts speak on Bartonella. He was expressly interested in learning more about the psychological and neurological effects of lyme and co-infections such as Bartonella (and others) because I was a challenge to him – no one had come into his office exhibiting quite this severe of symptoms. His education at this conference did not disappoint.
He told me that he was most impressed with Dr. Mozayeni who heads up Galaxy Labs. Dr. M is an expert in lyme disease and Bartonella. You can listen to a three-minute PREVIEW of his talk at the 2014 ILADS conference here.
My appointment with Dr. W went very well, overall. I felt heard and respected this time and I very much appreciated that. Dr. W has always been a good doctor, but can be a bit on the gruff side when he gets challenged or stubborn. His heart is huge, though, and he always softens by the end of the appointment. I was pleased, however, that we were talking more as equals this time around and he noticed I had been doing a lot of homework between the last time he had seen me.
I gave him my update of the past month: September 30-October 15 were magical and happy. My symptoms oddly decreased and I dare say I felt more “me” than I have in years. It was quite a welcome change to my family who had had to put up with my pain, rage, depression, and funky neurological symptoms for a long time – and also dealing with me barricading myself in my bedroom so they wouldn’t see me in such a state.
I keep telling myself that the good days are just that and when they end, I will be grateful for them instead of mournful. Every time a good stretch ends, however, I feel like a huge cloud just dumps buckets over me and a sinister voice yells into the flooded darkness, “JUST KIDDING!”
It’s hard to keep perspective. Depression comes upon you like a monsoon and you forget all the good that just came before.
So between October 15th and the 24th I experienced debilitating depression and despair, so severe even a lifetime of suffering from chronic depression couldn’t touch it. I didn’t recognize myself anymore. It was becoming very scary.
The Saturday night before my doctor appointment I accidentally took two Lamictal tablets. I was so out of it that I made all kinds of mistakes filling my med box. One of the many reasons why I need assistance with these things. Anyway, when I awoke Sunday morning and found two Lamictals in my Sunday box I put two and two together and realized I had taken the extra dose the night before. I panicked for a nanosecond – so short because I quickly noticed something odd:
I felt amazing.
I laughed as I realized that Dr. W had actually told me to raise my dose after one week, which is what I accidentally did, so it seems. I spent all of Sunday feeling more like myself, able to smile up at the sky and sing around the house. Hubby was grateful yet a bit leery. Would this last?
It did last – for almost a week. It lasted through my LLMD appointment so I was able to take the 1 1/2 hour drive through rural Wisconsin and enjoy the bursting-with-Autumn colored trees and the crisp wind. It was the most enjoyable ride there I ever had.
Dr. W was thrilled that I had had two bouts of improvement. Although the dip that happened in-between the two highs was especially severe, he said to take hope in knowing that something had gone right. It happened twice and it could happen again.
After Doc listened to my current symptoms and questions, he told me he wanted to put me on a new antibiotic protocol that this Dr. M had done. It’s daily antibiotics rather than pulsing and that immediately put me on edge. Dr. W assured me he’d dump so many probiotics and anti-fungals on me that my gut wouldn’t dare think about suffering from a yeast overload from all the antibiotics. This new protocol has me on two antibiotics daily for two months and an anti-protozoan on Thursdays and Fridays. We’re playing with the hydrocortisone levels a bit as well as adding progesterone cream to address my hormone imbalance to hopefully assist with my mood.
I came home feeling happy with my appointment but overwhelmed at how many pills I was adding to my lot. I had to buy a new medication holder because I was going to be taking about 30 pills a day. I don’t have the exact number in front of me, but it’s a lot and in my research there aren’t any containers out there that hold that many. I’ve had to get creative.
Once I started the progesterone cream, things became a bit screwy. First, a short lesson on the P word.
This web site is a great resource on Progesterone therapy. This explanation of the fight-or-flight concept and definition of stress causing illness addresses many of my ailments. It also explains why, in a very user-friendly way, my body temperature goes freezing and my heart races when I face anything I remotely find the tiniest bit stressful. My body has chronically been in the fight-or-flight stage and has thus caused the following:
- The heart to race, so blood pressure goes up
- The rennin-angiotensin-aldosterone system is activated to raise blood volume blood pressure goes up
- Angiostensin causes blood vessels to constrict, so blood pressure goes up
- Aldosterone production causes sodium to be drawn into the tissues, which causes water to be retained so blood pressure goes up
- Glycogen (stored glucose) is released by the liver to supply extra energy to cope with the emergency. But excess glycogen increases blood fats
- Blood is directed away from peripheral blood vessels and directed to the heart and major muscles, this causes the temperature of the skin to drop leading to feeling cold
Read more: http://www.progesteronetherapy.com/definition-of-stress.html#ixzz3qD4xVEXu
Under Creative Commons License: Attribution
More people suffer with this than they realize.
The first time I used the progesterone cream, however, I used too little out of excess caution and I caused some adverse side effects, known as estrogen dominance. So I felt horrible after the first dose. More symptoms came the following day, but I doubt it had to do with that.
Along with the cold weather, my pain increased tenfold. My joints seize up and every muscle aches. It’s been very hard to walk at work and home. Doing the grocery shopping last week was next to impossible and I almost had to raise the white flag and abandon the cart all-together, but I powered through it only to be bedridden the rest of the night. One must sacrifice for the kids’ special waffles, I guess. Ok, kidding.
But the pain has really been difficult. Besides that, my central nervous system has been going haywire and the pin-prick, burning, stinging, freezing-water-down-the-arms sensation mixed with the facial flushing and hot skin sensation – all of it is just hugely uncomfortable and frustrating. Nausea and headaches, like a constant flu I’ve not shaken for over a year.
The day after my LLMD appointment, I had a long-awaited neurology appointment. I didn’t think they would take me seriously; they didn’t last year, but I decided to remain hopeful since this year had brought with it puh-tewies and “seizures.” Long story short, the neurologist ordered an EEG and a skin punch biopsy (focusing on neuropathy? The sae neuropathy the pain clinic told me I didn’t have last year?) but at the end of the appointment, she said, “If the EEG comes back normal, I don’t believe your issues are of a neurological nature.”
But it gets better.
She ended the conversation with, “hhmm…perhaps your symptoms are simply stress-related. Have you thought about seeing a counselor?”
And…I limped out to the parking garage and sat in my car and cried. If I had a nickel for every time…
What a clear example of the state of Lyme awareness:
Monday: Dr W, my Lyme literate doctor, tells me I have a brain infection.
Tuesday: Dr. Neurologist says that she doesn’t believe anything is neurologically wrong with me and I ought to think about seeing a counselor.
I wanted to speak in a very loud voice as I was leaving the neurology clinic that it was a tragedy that they knew nothing about Bartonella and that, most likely, almost half of their chronically ill patients were walking around with it.
But that would have been rude. And I probably would have been escorted out. And sent to a counselor.
Kidding. I already see a counselor.
So that was my irony of the week. Brain infection one day, nothing neurologically wrong the following day.
It was not a banner day of faith in the medical community at large.
So. Time to wrap things up.
My current sitch is this:
I start the new antibiotic/anti-protozoan protocol a week from this Monday (I’m waiting an extra week so I can attend a major author event I was invited to next weekend. I need to be healthy enough to participate and it was a huge deal to be invited!). I’m on the other raised supplements now and experiencing a lot of highs and lows, psychologically. Much pain – the classic foot pain that comes with Bartonella, the burning, searing, stabbing. Pain in the knees, particularly, making walking a struggle. Cold air seizes the joints. My limbs feel numb and cold and hot, all at the same time. Fatigue has increased a great deal, but I am working on improving my sleep habits (bye-bye bedtime Netflix). Severe depression comes and goes quite suddenly.
Simultaneously, some things are going very well. I’d be amiss if I didn’t mention that. Creatively speaking, I’ve gotten two gigs lined up with a possible third. I thought all my author events were over now that the book has been out a year and I’ve become so ill. But God has seen fit to continue to bless me with invitations to events and I am so very grateful. Now I must step out in faith that He will equip me to go.
My youngest child, who had severe behavioral problems that stressed me out a lot, has turned a corner and he is doing much better which makes being at home a great deal easier. I am so grateful for that. I’ve had some very sweet times this past month:
Buying an adult coloring book and decompressing while coloring the intricate designs.
Going out to eat with hubby.
Planning a new writing class.
Discovering BBC shows on Netflix
Yes, good things are on my plate as well and it’s important to keep perspective.
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