Gluten Free Options

So I've decided to post on a bit of a rabbit trail today, partially because I promised a friend I would e-mail her some information about gluten-free diet and I decided to kill two birds with one stone by blogging about it as well!

In today's world, many of our foods are contaminated by common allergens: wheat, soy, dairy, eggs, and corn are just a few examples. Others include nuts, chocolate, tomatoes, certain kinds of fruits, as well as natural and artificial sweeteners. Walk into a fast-food restaurant today and try to find something that does not contain one of these allergens and you will likely be able to find something. Try to find something free of two of these allergens and the task is close to impossible.

Thankfully today's world's food choices are wider than a fast-food restaurant! Most grocery stores (and even places such as Walmart and Target that sell more than just groceries) have a small or large gluten-free section. These selections will oftentimes include crackers, cookies, chips, pastas, cereals, breads, bread-product mixes, waffles and pancakes, and varieties of gluten-free grains. If you have a corn allergy you will need to watch that corn has not simply replaced wheat in some of these products, but you can generally find what you need or want. I could go on and on about the variety of gluten-free products you can find, some ready made, some in kits. Pizza crusts, ready-to-bake pizzas, muffins, frozen burritos, granola bars... you name it, I can help you find it.

The trouble with some of this is that all these foods (even some organic products) are just as processed - if not even more so - as their gooey-gluten-infested counterparts. So, you can eat gluten-free one of two ways:  naturally gluten-free, or processed gluten-free. Examples would be, making a toasted sandwich on gluten-free bread for lunch, or baking a potato and eating that with a side of meat and some other condiments. It all comes down to personal preferences, nutritional convictions and education, and price-range. Eating naturally gluten free (rice, potatoes, and vegetables instead of breads and pastas) is not only cheaper, but also better for you. There are dozens of kinds of potatoes, beans, rice, and lesser-known vegetables that taste great once you find your favorite ways of cooking them. Here are a few of my favorite ideas:

• White jasmine long-grain rice (naturally white, not bleached) with Cuban-style black beans
• White jasmine long-grain rice with Jamacian-style red kidney beans
• Cilantro-lime rice with refried beans, tortilla chips, and fresh salsa
• Spanish-style rice with beef and tomatoes

For potatoes, I usually eat them with pan-sauteed chicken breast or pan-sauteed turkey burger. (Aldi has bags of frozen chicken breast, and I found a package of turkey burgers at a local fresh market.)

• Roasted sweet potato with coconut oil and honey
• Diced sweet potatoes and beets, tossed in olive oil, salt, and pepper, and baked
• Salt potatoes (boiled in a salt-water brine)
• Grilled potato fries (you can use a crinkle-cutter blade and do these on a counter-top grille if you like)
• Pan sauteed potatoes (regular or sweet) with onions (yellow, sweet, or red)
• Baked redskin or Idaho potato with coconut oil, honey, salt, and pepper
• Baby or new potatoes, boiled

I'm usually a raw-veggie-dipped-in-ranch sort of person, but when you can't have ranch dressing, you become creative with some new ways of eating vegetables.

• Celery with almond or cashew butter
• Celery, carrots, and peppers with humus
• Roasted broccoli, cauliflower, and Brussels sprouts (chop broccoli heads into bite-sized pieces like you would serve on a veggie tray. Toss in olive oil, salt, and pepper and roast on a cookie sheet in the oven at 375* F for 30 minutes until tender-crisp)
• Bake beets in a glass pan, also tossed in olive oil and seasoned. Goes well with sweet potatoes and onions baked in the same way.
• Asparagus or green beans sauteed in oil or water with garlic and onions
• Steamed broccoli seasoned with salt, pepper, and lemon juice (I think this is tastier than the usual Parmesan cheese topping now!!)
• If you can still have dairy, but can't have gluten-containing products such as pastas, try replacing noodles with cauliflower or spaghetti squash. I have tried spaghetti squash, and know someone who has made a modified beef stroganoff recipe and served it over cauliflower instead of egg noodles. I would like to try this some time when I am allowed to have dairy products again. 
• I'm not a fan of spinach as a general rule, but I do like it steamed with salt and pepper, sometimes olive oil or garlic as well

One of the trickiest things about going gluten free is snacks and meals on the go. Here are a few ideas for both of those.

• Gluten-free crackers with your favorite nut butter, cheese, etc.
• Rice cakes dipped in hummus
• Fruit, such as apples, grapes, bananas, oranges, etc. Certain ones are also good with nut butters.
• Sprouted (soaked) almonds, other kinds of nuts
• There are some great gluten-free bars available, such as Larabars, made from just a few ingredients. My favorites are blueberry and cashew cookie. These are my middle-of-the-night life-savers. A few times I've woken up quite early, starving, and having one of these by my bed saves me from having to venture downstairs to get a snack from the refrigerator. They are kind of tricky to find, but I found them at Wegmans in Erie. Whole Foods Coop also sells them (they are more expensive there). Some Sam's Clubs and Costco's also sell them.
• Tortilla chips and fresh salsa
• Roasted, seasoned chick-peas. Best hot.
• Popcorn! I just season mine with tons of salt. And, if you must have a butter substitute, a little melted coconut oil is alright. 

Worried about not being able to eat out? Here are a few recommendations and websites to help.

• Gluten Free Registry.
• Gluten Free On the Go.
• Chick-fil-A - some restaurants advertise the grilled chicken nuggets, others do not. You can also request chicken strips grilled, or order just a char-grilled fillet. Obviously fruit cups are gluten free, and I don't remember if the fries are, but they have a fantastic nutrition guide with all that information that should be available at the restaurant. 
• Five Guys - you can order your burger without a bun, but I recommend bringing your own bowl to eat it out of, and I also recommend ordering messy condiments such as ketchup, mustard, and relish on the side. Getting all of that mess inside foil just requires too many napkins.
• Moes, Chipotle, or Qdoba - I love a good burrito, but I've had to give up having it in the tortilla. Most places will just give you the burrito ingredients in a bowl. I think it's called a naked burrito. 
• Olive Garden - I hate going here with my family because I always want the bread sticks and the pasta looks soooo good! However, some of the soups (the zuppa tuscona is my favorite) are gluten-free, so you can always fill up on soup and salad.

I was specifically asked about brand recommendations by my friends, so here are some. 

• Gluten-free oats: I buy in bulk from the Whole Foods Coop in Erie. They have both organic and non-organic available.
• Gluten-free bread: I buy Glutino Fiber Bread from Wegmans and keep it in the freezer and toast slices as I need them. I have tried a white rice bread from Udi's, which is commonly available wherever gluten-free products are found. I was trying to make gluten-free, dairy-free grilled cheese (riiiiight). So I used this bread, a soy-based cheese replacement, and grilled it in a pan in coconut oil. I was NOT a fan of the cheese, and the bread seemed to get soggy quickly. The texture is smoother than the fiber bread, but I still prefer the fiber bread anyway. 
• Gluten-free crackers: I found Mary's Gone on my most recent trip to the Coop. The are made primarily from seeds and have a strong flavor, but they are good with almond butter or goat cheese on top. 
• Gluten-free pasta: I recently tried a quinoa/corn pasta that I found at Giant Eagle. I have tried Tinkyada brown rice pasta (elbows as well as penne). I was not a fan of the gummy-texture. The skinnier the noodles, the better they taste, it seems. 
• Gluten-free cereals: probably the easiest and cheapest cereal is rice chex, corn chex, or plain cheerios made from oats. I have tried some gluten-free cereals from Glutino, but I didn't like them and didn't think it was worth it to pay that much. 
• Gluten-free flour alternatives - a brand I would recommend is Bob's Red Mill. I have tried their rice flour before, but I know they have many, many mixes, flours, and other items. 
• Nut butters: Justine's, Maranatha, or in bulk from Whole Foods

Just a few assorted tips, some gluten free, some for other allegies...

• Adding xantham gum to a recipie with your gluten free flour can help the taste and texture
• Don't try using egg-replacer to make egg-free brownies. I'm not sure how it can be done. I'm sure it can, but egg-replacer is NOT the way to do it! =)
• You can find coconut and almond yogurt in some places (I found it at Whole Foods Coop, and I'm sure Wegmans carries something similar). The brand I tried for almond yogurt was Amande, and I have heard the So Delicious makes a pretty good coconut yogurt. Amande was not organic or anything. 
• Of soy, rice, flax, and almond milk, my favorite by far is flax milk. However, it is difficult to find, so I usually end up getting rice milk (Rice Dream brand). It tastes similar to skim milk in cereal, but it's still difficult for me to drink a glass or have some with cookies. It's just not quite the same. 
• Coconut oil makes a great substitute for butter, and it is very healthy for you. Depending on which brand you get, it doesn't really smell or even taste like coconut! Usually we by Spectrum, which is an Organic brand, but if there is a sale on something else, we will sometimes change to a different brand. These come in glass jars or bottles, which is a blessing, because coconut oil will often harden, but can be melted again. I usually boil some water and pour it into a glass bowl, set the coconut oil in the hot water, and wait for it to melt so I can use it easier or pour it into recipes or dishes.

Finally, a few ideas of where to find gluten-free foods.

• Health food stores (such as Whole Foods Coop in Erie)
• Whole Foods (an actual grocery store, not to be confused with the coop mentioned above)
• Giant Eagle
• Krogers
• Meijer
• Trader Joe's
• Online (Paleo bread, Larabars)
• Farmer's Markets

I hope this has been helpful to someone out there!! :)

Appointment Review

Summary, in case the medical details bore you:

• Good appointment with Dr. Conley by phone yesterday
• Valtrex update - will remain on it until Christmas
• I'm not gluten intolerant (yet) but I have high sensitivities to gluten and so I'm officially GF (gluten free)
• I have some bloodwork coming up this Thursday
• I'm going to write a novel. This November. Yay for NaNoWriMo!!!

Yesterday I had another phone consultation with Dr. Conley. I'm getting rather used to phone doctor's appointments, I think. I set up the desk with my binders of test results, other paper information, all my current supplements (so I can update him on any changes), and my computer as my own personal researching center. Today's appointment I had a lot of good news for him since my October 2nd appointment. I told him about Progressive Medical Center and Dr. Agolli and the vitamin IVs and how much better I am feeling now. After I'd told him everything he said, "Well, whatever works, that's what we'll do!" If it turns out that I need more IVs, I can go back to Atlanta for more treatment. Dr. Conley thinks it is likely that the IV solution was saline (salt) based, which increased my blood pressure and helped take care of some of the other orthostatic symptoms, and the vitamin B increased my energy levels.

Although I've been feeling better, Dr. Conley thinks I need to be on Valtrex at least until Christmas. Possibly after the current round is finished, I can switch from Valtrex/Valacyclovir over to Acyclovir, which is a little bit older of an antiviral drug and a little less expensive. I still want to do some research on Phoenix Rising about the difference between the two, so I might blog about that later.

The saliva test revealed some interesting things. First, my adrenals are actually not in too bad of a condition. Second, my saliva shows high gluten antibodies (indicating a possibly food allergy or intolerance) despite the fact that my blood does not display any adverse reaction to gluten. In Dr. Conley's experience, saliva is an 'early indicator' of gluten intolerance. There has been no permanent gut damage, but if I were to continue eating gluten, it is possible it could cause some real problems down the road. So, looks like I'm gluten free for good. I'm thinking about blogging about some gluten free brands and food options soon. Let me know if there is anyone out there interested in hearing anything specific on that!

We also talked about a blood test useful in diagnosing how well my natural killer cells are functioning. (I don't remember what those are or what they do... sorry.) When I had my first round of bloodwork done the lab ran the wrong test. So, I called the supervisor and it took about two weeks to make sure the right test would be done. It was drawn again last week, but something happened that contaminated the specimen, so the lab called me to come in yet again for this test on Thursday. I just hope this is the last time for sure!! If those come back low, there is a very effective way of raising natural killer cell function by as much as 200%, and it is natural and has no side effects. Whoop-de-doo! Already ordered some of that, because it sounds like even if they come back just fine, it wouldn't do any harm to take them anyway, and it could help my struggling immune system.

I am looking forward to my time of recovery. It is almost November, and that means that NaNoWriMo is almost here!!! I participated in National Novel Writers Month in 2010 when I was recovering from mono. I'm looking forward to now participating in it as a recovering CFS/ME patient. If you are friends with me on Facebook, I will be posting photos daily with a word count update. If not, I will sometimes probably post updates here. Just don't count on as much blogging. I'm going to be writing 1667 words a day at least, so I don't know if I'll even want to blog!

Well, I think that's about it. Have a fantastic day, y'all! :)

More Healing Hints

(1) Even more ability and willingness to socialize! Last week my mom and I went shopping for bathroom accessories (the actual remodeling will begin next week!!!), I went to two soccer games (okay, one was at the Y, but...), and my likkle bru-vah's youth rally.
(2) Starting to be able to sing sometimes. Or at least lip-syncing, if I'm not actually singing. Usually while I'm by myself and feeling a little on the crazy side.... :) Haha, I'm doing a music research problem for my friend, and I find myself dancing along, playing air guitar, and being generally ridiculous. It's fantastic, really.... :) There used to be certain kinds of songs I couldn't listen to when I was tired because they would make my heart race or blood pressure go up, but now that doesn't happen anymore either.
(3) Enjoyment of old hobbies, such as reading and writing letters, is coming back. Beth, your note is finally written and in the mail!
(4) Two short walks while we had some good weather last week.
(5) Ability to maintain and renew friendships. It's been so great to spend more time on the phone, writing e-mails, writing notes to those who I correspond with by mail, etc.
(6) Feeling like I could start a job soon, at least in the afternoons a few days a week. Not ready for full time yet, but soon I will be!
(7) Not only loving food, but helping out in the kitchen (my mom, or making myself food since I require a special diet still).
(8) Last night I had a really bad headache - the worst one since my headache that started after my appointment with Dr. Conley - but it went away with sleep! Yay! No more Horrible Horaces!
(9) People say I'm looking good... and I don't have to tell them I'm faking it. I don't feel like I really have an invisible illness anymore, because I am truly feeling so much better.
(10) I can't wait for November to get here, because it means my brother Ian will be home soon, I can't wait to make sweet potatoes for Thanksgiving, and I am looking forward at being crazy and attempting to write a 50,000 word novel for NaNoWriMo.

I have a phone consult with Dr. Conley this afternoon. What are you folks doing this Monday? :)

~Camille

The Big Green Monster

My first exposure to Lyme's Disease dates back to early childhood. When we first got our pets (Kep and Sandy) and were taking them to the vet, I remember seeing posters of a big lime-green monster with the words "LYME'S DISEASE" printed in all caps. I think it was supposed to be a picture of the Lyme-causing bacteria, borrelia burgdorferi. At that time, I thought it was something only animals could get. Then when I went to North Carolina for my year at the Mission, my aunt cautioned me to be careful about dressing with long sleeves and tucking my pant legs into my socks to avoid ticks. (I didn't... but I never remember seeing any ticks either. Interestingly, the deer population of Graham County, North Carolina is 0, but that doesn't necessarily mean there aren't deer ticks or other Lyme-carrying creatures, according to Dr. Mercola.)

Some have asked me about the possibility of Lyme's Disease as a root cause or contributing factor to my illness. I have had two Lyme tests done (April '12 and October '12). The results of the first were negative, and I'm pretty sure I would have heard back from Dr. Agolli's office by now if the second one was positive, so I think it's safe to assume both were negative.

But does that mean anything? Apparently not. Most Lyme tests come out as negatives - some say as many 90% - but it is believed that many of those patients do in fact have Lyme. Lyme is now being diagnosed more based on symptoms than on blood test results.

It is possible for me to have Lyme and ME/CFS at the same time. When I asked my friend Heidi (to whom I refer to affectionately as my medical genie) to explain this relationship between Lyme's and ME/CFS, this is what she wrote back:

Here's my personal experience with the whole Lyme thing...

Among the ME/CFS community, it's often accepted that you can have both Lyme and ME/CFS, so getting a Lyme diagnosis doesn't necessarily change anything.

Among the Lyme community, it is known that the diagnosis of Lyme is often given even in the absence of any positive Lyme test, and they tend to be of the opinion that all severe ME/CFS cases are Lyme's.

So you can see how everything gets murky.

Yes... I can....! It is so tricky! To add to the trickiness factor, Heidi tells me that you can also get Lyme from a spider or mosquito bite in some rare cases. Hmm.... I've never been bit by a tick, but I've sure as shootin' been bit by both spiders and mosquitoes. Lyme is not completely ruled out... however since I am seeing so much improvement with treating the fatigue side of my illness, I still believe it is fair to conclude it is not a viable option for an underlying cause of my illness.


In closing, I want to offer a few resources about Lyme's Disease that I have found to be informative and helpful.

Documentary about Lyme's Disease (keep in mind - sometimes documentary producers have a tendency to pick out the worst case scenarios):
http://articles.mercola.com/sites/articles/archive/2012/10/13/under-our-skin-documentary.aspx

Doctor's who Specialize in Lyme's Disease:

• Haverford Wellness Center (Harleysville, PA)
  A friend found this Dr. Braccia for me, who is located near Philadelphia. His website has some helpful information about Lyme testing that you can look into if you are interested.
• Jemsek Clinic (Washington D.C.)
  Dr. Jemsek is mentioned in the documentary, Under our Skin
• Dr. Christine Green (Northern California)
  5050 El Camino Real Ste 110
  Los Altos, CA 94022
  (650) 964-6700
  In the News: Ticked Off and Touched by Lyme

Have fun tracking down that big green monster!

Feeling Frodo-ish

Photo Credit: Accessed Online through Google Images

How do you pick up the threads of an old life?
How do you go on when in your heart you begin to understand, there is no going back?
There are somethings that time cannot mend.
Some hurts that go too deep... that have taken hold. 

From "The Return of the King"

Banner Day!

Yesterday was a banner day, energy and productivity-wise!!! Yay!! I woke up feeling tired, but nonetheless refreshed, after a not-so-great night of sleep. I told a friend, "I'm going to stay in my room and probably in bed alllll day and rest." About a half hour later I was up, had taken a shower, and was running errands with my dad. Friday and Saturday were sort of exciting for me, because I stocked up on gluten food that I can eat! I got some almond and cashew butter (cashew butter is amazing; it tastes like a candy bar!), some quinoa pasta, a soup to try, turkey burgers, goat cheese, and maybe one or two other things I'm not remembering at the moment. Tons of veggies, too, since those are easy to make and healthy.

Anyway, back to yesterday. In the afternoon (after my lunch of apples with my new nut butters and a few other miscellaneous items) I prepared and sent some medical forms out and helped my dad with some financial stuff. This year since I have some spare time I told my dad I would make an Excel spreadsheet for him so that it simplifies his tax processes at the end of the year, which makes filling out my FAFSA a whooooole lot simpler!

Then, *drumroll* I helped my mom make dinner. We were shuffling pots and pans around so many of the burners it wasn't funny!! The menu was barbecued chicken, salt potatoes, and fresh sauteed green beans. The hitch was we didn't have any barbecue sauce that wasn't loaded with high fructose corn syrup. Soooo... I made ketchup using a recipe from Skinny Taste, and then used my homemade ketchup to make barbecue sauce. (I used this recipe, but I had to modify it insanely. I didn't have the ingredients to make the sauce from Skinny Taste, although I know it would have been better if I had.) The salt potatoes turned out fantastic! I'd never heard of salt potatoes but apparently they are a trade-mark food of Upstate New York. You use about 12 ounces of salt for 4.25 pounds of potatoes and boil the potatoes in saltwater until tender. If you carefully lift the potatoes out of the saltwater, the salt will dry on the potatoes and coat them. Most amazing potatoes ever!! Deliciously salty on the outside, and slightly bland but oh-so-creamy on the inside. Erie County Farms sells bags of them if you are interested. Oh, and the salt comes in the bag, so you don't need to measure out your own salt *cough* like I did before opening our bag...... =) And then after dinner, I made cookies for my dad. Apparently it's the best batch of cookies I've ever made... but I can't eat any because I am gluten, sugar, and dairy free for another 25 days :(

After all the activity of the day yesterday, I've been more tired today than I have been in a few weeks, but I'm sure with rest I will rebound. :)

Finally, I have a shameless plug to make. I'm a member of a site called Scholarship Points. I haven't used this site too much to be honest, but I recently started paying attention to it and recognized that the system is a lot easier to use than a number of other ones. How it works is each time you log in and complete activities, you earn points. If I refer people and they visit or join the website, I earn points. If you join, I'll be overjoyed, because I'll earn 225 points, hehe. But today all I am asking you readers to do is to click the link at the end of this post, and for every click I will earn 25 points. That shouldn't be too hard to do. So, all you've gotta do is make a few minuscule movements with your fingertips. Click the following link so I can earn points, please! I'm spending them on entering a $10,000 scholarship award drawing =) http://bit.ly/SYyRXg

Sometimes....

Sometimes every one of us feels
Like we’ll never be healed
Sometimes 
Sometimes every one of us aches
Like we’ll never be saved
Sometimes
--David Crowder Band

You know the feeling: the heavyness, the helplessness, the hopelessness.... It's impossible to shake. "It will all work out in the end," sounds like such a cliche... or maybe even an insult. "When? Why?" Not just "When will I be better?" or "Why am I sick?" No, the pain drives us to asking bigger questions than that, because thanks to support groups and the Internet, we know we are not alone in this suffering. "When will the world be redeemed? Why is their pain and suffering?"

I don't know. I really don't. I don't understand any more than you do.

But I know the feeling of healing... the first breath of spring, and healing....

I know that somehow, some day, it will end. Sometime.

So don't give up. Keep on going. Persevere. Be determined. Aggressively pursue healing with every ounce you have, even if it isn't much. Surround yourself with people who will lift you up, help you, and give you hope.

Don't. Ever. Quit.
Don't. Ever. Give. Up.

P.S. Beth - this is for you. ♥

Healing Hints

I promised some of you I would blog about the ways I can feel healing beginning to happen. This is a brief post with 10 ways in which I feel healing taking place.

(1) Cold symptoms - stuffy at night. You might not think this is a sign of healing, but to me, it shows that my immune system is beginning to funtion normally by fighting 'normal' sick issues.
(2) No brainfog!! Or when it's around, it does go away with rest.
(3) Improvement with rest. That seems like such a simple thing, but it is a function of the body that is somehow broken during CFS/ME.
(3) Ringing in ears has stopped. Wahoo! That was getting irritating....
(4) Not loosing my train of thought as much, not forgetting what I was saying, not searching for words.
(5) Trouble sleeping at night after electrotherapy. When my body's electrical pathways are properly stimulated, they do in fact respond correctly.
(6) Able to have lights on at night. I was on Skype last night and my friend could see me instead of just hear me! :)
(7) Significantly reduced stress levels. I feel at rest without having to naturally work on breathing or use some kind of somatic system. But, when I do feel stress, I am more aware of it and able to deal with it properly.
(8) Slight increase in ability to multitask. (Slight.)
(9) Ability to socialize is coming back. There was a point a few weeks ago where if you put me with people in a social setting, I would react very negatively. I didn't know what to say and felt very uncomfortable and easily overwhelmed. Many times I would just find a place to hide and cry.
(10) I love food and eating again. It feels normal, healthy, and natural.

All thanks to Dr. Agolli and the incredible staff at Progressive Medical Center in Atlanta, Georgia!

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! :)