Article on Glutathione

In case you are interested in reading about what's been pumped into my arm the past several days....

Glutathione: The Mother of All Antioxidants

"All the cool kids pass out."

My first appointment with Dr. Agolli went well. He has been very gracious to me in providing excellent care. Progressive Medical Center is a fantastic clinic that offers excellent, professional, holistic care, and I am very happy to be a patient there.

From looking at my current bloodwork results and hearing all of my symptoms, Dr. Agolli is concerned with my adrenal function, extremely low iodine levels, and the possibility of Lyme's disease. Soon I should be able to start iodine and adrenal supplements (I was taking some from VitaCost, but I ran out/went off them for a while). He ran another blood test for Lymes (I was tested with a negative result in April), so hopefully I will find out the results of that soon.

As I mentioned earlier, part of the treatment from PMC involves IV treatment. I had my first IV Monday and have had one every day since. Yesterday's IV was a bit of an adventure :) I don't think the IV needle went in straight or something. Whatever happened to it, the needle was causing pain in my arm. I told the nurse, but I also began to feel hot all over, and my hearing started to fade. I could tell I was passing out. So I got to smell smelling salts for the first time. Be warned, they are nasty buggers! Then Laura, who is the best nurse ever next to my dear friend Jill, gave me a cotton ball full of essential oils, and after that I happily sniffed away while my IV dripped. I couldn't help but laugh when another patient remarked, "Yeah, all the cool kids pass out," while the nurse was removing his IV. The things you overhear in the IV room sure are strange!

Tomorrow I have another IV as well as a follow-up meeting with Dr. Agolli. Over the weekend I have some more at-home tests to do, one more IV on Monday, and then, sad to say, my short time at PMC will more than likely be over.

And now the million dollar question: how are you feeling, and are the IVs working? The answer? I believe they are working, and I am feeling better. I still notice some of the POTS symptoms on occasion (the dizziness after standing up, etc.), but last night I felt energetic for the first time in a while. Yay! :)

I also attribute some level of improvement to the Valtrex. Brain fog is settling down, most notably. Another Yay! :)

And, as always, I attribute most improvement to my wonderful friends who have helped and supported me during this journey. You're the best.

Appointment Today

I know what you're thinking after reading the post title. But you just had an appointment last week! Yeah, I know; I did. And here's another fact. I'm seeing another new doctor. In my previous post I briefly alluded to Dr. Agolli, a naturopath who treats using vitamin IVs. He is the doctor I am going to see today. I am hoping the IVs will decrease some of my POTS symptoms and give me some more energy. I'm not certain if I'll be receiving any of those today, but it's possible. I have a feeling he'll want to run some other tests before starting that treatment. So this weekend I filled out another long medical history form, and will be going over my two-year story yet again. I think I'm getting rather used to this.... :)

Just to clarify, I am not seeing Dr. Agolli because I disagree or am dissatisfied with the care I am receiving from Dr. Conley. I am willing to try anything I can that I feel will promote healing, and after research, this is something that could possibly help, so I will pursue where ever this natural track takes me. What it can help with, I will take; what it cannot help with, I will seek help with from elsewhere (as I have already been doing). I will probably not be able to see Dr. Agolli more than a few times during the remainder of my short stay in Georgia, so this will be a temporary treatment - but hopefully one with long-lasting results.

Any questions, just leave them below as a comment and I will reply!

Georgia on my Mind

Yesterday I had a follow-up phone appointment with Dr. Conley. First we reviewed my symptoms. He was encouraged that I haven't had any more of the 'spasm' episodes of paralysis and that the Valtrex finally seems to be helping my energy levels. We went over my continuing orthostatic symptoms (low blood pressure, high heart rate) and he recommended that I monitor both of those on a daily basis and see what they do, so I guess I'll be getting a blood pressure cuff. 

Second we reviewed the bloodwork results (from those 20 vials I had drawn over the past three weeks.....!!) and everything looked pretty good. Some levels weren't as low as he thought they might be, which could be good. But that could just be because I am young and so levels are higher than a range of normalcy, but for me at my age they are still lower than they ought to be.

Third we discussed some blocks in my energy production. Although I'm taking 1.2 mg of vitamin B-12 daily (which is 20,000% the DV), my B-12 levels are low, so I'm taking more B-12 lozenges and going to start a CoQ-10 supplement as well. All of my other medications and supplements are staying the same until further notice. 

Towards the end of my appointment, Dr. Conley reitterated something I've been hearing a lot from Heidi recently: do whatever promotes healing. So, part of my prescription is lots of comedy/romance movies ("No 'Murder on Elm Street'!"), light reading, and light exercise when I feel up to it. 

In keeping with that prescription :) I'm currently on vacation in a place where I have tons of free time, clear and warm sunny days, and a nice patio outside to read. I am very thankful for Uncle Bob and Aunt Linda allowing me to stay with them in Georgia for two weeks! The sun and pool-side reading this morning was so relaxingly wonderful. 

Aunt Linda has been telling me about a naturopathic doctor here in Atlanta, Dr. Agolli, who offers IV vitamin treatments. Interestingly enough, one of the first CFS/ME doctors I found in Indianapolis also offered IV vitamin treatments (this would be Dr. Guyer, for anyone who is interested to know). From the little research I've done, I found a study that says vitamin C IVs seem to help reduce fatigue about two hours after they are administered and the effects last about 1 day. That's not too impressive, but I also discovered that vitamin IVs have seemed to help some CFS patients who have POTS (yes, please!!). So, although my research has been limited and my findings not very conclusive, it seems vitamin IVs have some helpful benefits and no known side effects or drawbacks (if you can stand the needles and aren't adversely effected by plastics). Will keep you posted! :)

"Well, FINALLY, Turner and Hooch!"

Well, I know the last update wasn't too promising, but I think the Valtrex is finally starting to make a difference energy wise! I now have the longest running streak of being out of the house I've had in a very long time - possibly since July. Monday, Tuesday, Wednesday, Thursday, Friday, and today, Saturday! Some days twice! I still tire out easily (in fact I'm quite tired right now....) but I'm still beginning to feel the slightest big better. And my vacation is almost here. I'm looking forward to seeing my brother, grandma, and some friends from the Mission.

P.S. If you're wondering what the heck the title of this post means, ask Stefan. He'll get a kick out of it. ;) Or just watch my amazing cousins' film, The Fall of Rome, by Tool Films, on YouTube. Trust me; it's the craziest mash-up of stolen plots and lines you'll ever see. Ever.

Valtrex Update

A number of people have been asking me how I have been responding to the Valtrex so far. To be honest, I've seen very little improvement. I think at this point my body is almost too distracted with meeting other needs and dealing with other issues to respond on any level yet. I am looking forward to a much-needed vacation in the near future.

In the mean time, I have been trying to pursue a philosophy of "avoid anything that is not related to healing." Note that I said "trying." Every day seems to have a few exceptions. Tuesday it was a trip to Lowes to pick out furnishings for the bathroom remodeling project. Yesterday it was a much-needed fall shopping trip to replace my too-big wardrobe with things that fit and are warm (yay!!). Today I need to catch up in my online class, since I've gotten a bit behind. The past few days have also been sleepless and full of emotion. I think I've cried as many hours as I have had dry eyes. I think I've been awake as many hours as I have slept, but felt exhausted regardless of being awake or being in a dream. My body aches for complete healing.

Forecast

All day, every day.... :)

Stolen from this Pinterest board.

Once the fog clears, maybe I'll have something sensible to write. Good night!

"What happened?" band-aids

Photo source: a Pinterest board

As a somewhat snarky person, I found these band-aids to be quite entertaining. What would be on your band-aid explanation? "I walked half way to a friend's house, and now I can barely walk!" would have been mine yesterday. As an aside, I'm very impressed that I made it that far; I haven't been out for a walk in almost two months, and in one go I walked forty-five minutes. Granted I was crying and could hardly breathe most of the time, but I was choosing to ignore that part of reality.....

Sometimes I think we just need one of these band-aids to wrap around ourselves that says "LIFE."

A Story That Will Make You Cry

Every 30 minutes a child is born who will develop mitochondrial disease by age 10.
Mitochondria are responsible for creating more than 90% of our body's energy.
The disease primarily affects children, but adult onset is becoming more common.


How's this for an invisible illness? My heart goes out to this family....

Photo source: www.cnn.com

The Invisible Disease That's Killing Our Son

"It must be dull to be well..."

I remember now that one of the questions on the 30 things list I made about my illness was "what gadget can't you live without?" I answered my battery powered lantern, which makes it possible for me to have any kind of night life. I think I should mention in this post that my cell phone also has a remarkable effect of keeping me sane by connecting me with the outside world.

Last night I was blessed to be on the phone quite late with my wonderfully amazing friend Heidi. At the end of the conversation, we had just as much to talk about as we had when we'd started over two hours before. I definitely can't stay on the phone that long with most people, and I've come to realise that it is because those other people are well, whereas Heidi and I share the bond of a common illness. Which gives us a lot to talk about!! 

It must be dull to be well. Your conversation never comes close to approaching retro-viruses (which aren't viruses from the 1950s, mind you), the chemical load your body is bearing, discussion of the latest medical research, politics relating to the FDA and CDC, or where to buy an organic hair conditioner product. You would never think of reading medicine and cosmetic ingredient labels over the phone to one another. I shouldn't think either of you should be discussing custom earplugs or colored eyeglasses. Besides conversation topics, your selection of reading material is not nearly as broad as ours. We have fun books like The Perrin Technique, or Osler's Web to catch our eyes and hold our attention as we read about one outbreak of disease after another, or the body's fluid drainage system. You lack a vested interest in human anatomy and physiology such as we have. There is no reason you should be up past midnight discussing cough syrup, whooping cough, and the tiny hairs inside your lungs. But we have all the reason in the world. We're not medical students, so we're not graded for it, but we care to know anyway, simply because one never knows what knowledge one will need about the human body. 

It must be dull to be well. We ill people have so much more to talk about, think about, read about, and learn about.