I have been too tired, too exhausted to post anything for such a long time. Treatment had not been going well and after talking to my doctor, I had an emergency appointment with my doctor at the beginning of last month. Dosing was suspended for one month (its supposed to start again on Monday, so we’ll see how that goes) due to so many complications. I figured in the month of no dosing my body would have a chance to heal again and get back to where I was before the blow I received in December. This past month has not been at all what I had hoped for.
Instead I have barely been able to get out of bed, barely able to take care of myself and needed more assistance than I have in a very long time. Both my mind and body have been under assault from my diseases; particularly the Bartonella and the Lyme. It looks like I may finally be getting some answers as to why.
Even though dosing was suspended, I was put on a 10 day course of Xifaxin to help get things back in order again. Sadly, this did not help. Following my 10 days on Xifaxin I did a 5 day intensive cleanse on Purium hoping that this would help things improve the way it did in the fall. It did help, but only minimally. Something was very wrong and I didn’t know what. Blood work and a HIDA scan (gallbladder scan) were ordered to see what else could possibly going on inside my very sick self. After recieving the results of my HIDA scan it was recommended to follow up with a surgeon to discuss the possible removal of my gallbladder believing that there is a pocket of infection inside of my gallbladder that is affecting my liver function (I see the surgeon on the 15th of this month.) The gallbladder is often one of the first internal organs affected by Lyme and can easily develop a pocket(s) of infection making treatment extremely difficult. My ejection fraction looks ok, but my LLMD and treating physician still wants me to speak with a surgeon. I’m anxious about the surgeon to see how open minded he is and how much he know about Lyme and whether he is willing to talk with my LLMD. Its trial and error because the office staff never know what “Lyme Literate” is and you have to try to spell it out for them only to get nowhere.
Blood results show that despite my cleanse my ammonia levels still remain elevated, especially considering the time I’ve had OFF of dosing which always makes ammonia levels go up (they are supposed to come down after dosing but never seem to do so anymore without some type of help.) My B12 levels are in the toilet, being only a 1/3 of the low end of the spectrum and my cortisol levels are also low. I’ve been placed on medications to help get my cortisol levels back up to normal (side note – when I was working prior to retirement, as a 911 dispatcher my levels were always abnormally high!) I’m on B12 supplements (sublingual for now, but may have to go to injections if things don’t improve enough) My white blood cell count is also high proving that my infections are still raging inside my body. I’ll be on my new meds for a while and the blood work gets repeated in 6 weeks to see how much progress I’ve made (I’m hoping for leaps and bounds! Better to aim high.)
I had no idea the damage that both low cortisol levels and B12 levels could cause. According to the Mayo Clinic, here are some of the side affects of both.
Low Cortisol levels:
- Extreme fatigue
- Weight loss and decreased appetite
- Darkening of your skin (hyperpigmentation)
- Low blood pressure, even fainting
- Salt craving
- Low blood sugar (hypoglycemia)
- Nausea, diarrhea or vomiting
- Abdominal pain
- Muscle or joint pains
- Body hair loss or sexual dysfunction in women
- Pain in your lower back, abdomen or legs
- Severe vomiting and diarrhea, leading to dehydration
- Low blood pressure
- Loss of consciousness
- High potassium (hyperkalemia) and low sodium (hyponatremia)
- Darkening areas of skin (hyperpigmentation)
- Severe fatigue
- Unintentional weight loss
- Gastrointestinal problems, such as nausea, vomiting and abdominal pain
- Lightheadedness or fainting
- Salt cravingsMuscle or joint pains
Low B12 Levels:
- Shortness of breath
- Pale or yellowish skin
- Irregular heartbeats
- Weight loss
- Numbness or tingling in your hands and feet
- Muscle weakness
- Personality changes
- Unsteady movements
- Mental confusion or forgetfulness
With the combined list there are not many things that I haven’t been through recently or continue to go through. My shaky legs are driving me insane making it almost impossible for me to drive except for very short period of time and even then I have to be weary because at any given moment my legs and/or feet can begin to shake, making for very difficult let alone dangerous driving conditions, hence why I have opted out of driving lately.
I have tried to get out with friends a few times, thinking that maybe my depression was getting the better of me. Every time, despite having a good or bad time, I end up paying for my excursions for days on end. I went to a Washington Capitals game this past Wednesday (so nice to go to DC for fun and not for a doctor’s appointment!) I had a blast but spend 2 full days in bed barely able to move from bed to even go to the bathroom or to try to eat. I have to accept that for now, this is the way life is. I can’t wait for the day I hit remission, whenever that day comes and unlike most people, I wish I could go back to work. I hear that it “it must be great to be home and watch tv all day and do nothing.” THAT IS NOT GREAT AT ALL! I miss having a purpose in life other than surviving from one day to the next. I want to be a participant in life again. I used to say that I missed my old life, but in truth, I don’t remember what its like not to be sick anymore. I miss being a part of something bigger than myself, something bigger than my health issues and being a contributing member of society.
Doubt and fear dictate so much of my life now. I’m scared of the day to day trials and tribulations. I fear the unknown and the future. I ran into some people that I knew today and the entire time my heart was racing with anxiety. I wonder what people think. Can they see the change in me? Do they think I’m faking it? (I think all Lymies are pretty used to this question.) Honestly part of me still cares, though I don’t know why. I’m trying my best and doing the best that I can and none of them have to walk in my shoes or have. All I’m trying to do is to do my best and hopefully make a difference for someone else, so they don’t have to go through all I’ve been through. I’m just trying to kick ass, get well and survive the setbacks.
And doing a bang up job, I would say. I always see you as courageous.
Thank you so much!
I know what you are feeling because I have been where you are. I know how it feels to not remember feeling well. I can remember not wearing clothes or makeup for almost a year. I lost 65 pounds due to illness and didn’t realize it. I pray that God will make each day easier for you, I pray for you to have comfort while you sleep. I pray that you stop feeling weak and nauseous. I am asking God to heal your body and your mind. If you ever need someone to talk to call me. I truly understand! I send you love and much prayer!
Thank you so much for the love, prayers and support. I’ll be sending them your way<3
I’m sorry you’ve been having such a hard time. I’ve been there and it’s just really, really hard, I know.
And no. doing nothing but watching TV is not fun it’s THE WORST!! Not that we’re able to enjoy watching TV like anyone else anyway, because of the 100 distractions coming from our brains and our bodies and the general fact that chronic illness generally means you never, ever truly relax.
My heart goes out to you – you’re a warrior!