Tuesday, August 24, 2010

Personal Update

Well, I haven't been on in a long time and I have received quite a few comments on the blog so I thought I would update. I finished college in June and now have my BBA in HR Management. YAY! Currently, I work for my old employer on a temp basis. I have a second interview this week at a job that I really want since it is in my field of study. Wish me luck!

I no longer take Protandim and have taken the link down. I developed oozing raw patches all over my face. Finally, the doctor who created Protandim admitted that folks with autoimmune issues should not take Protandim as it amplifies the disease! Fantastic!! I specifically asked the question before I ever tried it and was told it was completely safe to take. It did get rid of my headaches so I won't trash talk it but I am unhappy with the company and its "doctor" for lying to me and making me look like a fool in front of all of you. My relationship with them is finished.

Thank you all for your comments and questions. I am so happy this blog helps so many who are looking for information on an alternative to the hatchet job :)

God bless,

Friday, May 14, 2010

MIL is hooked!

My mother-in-law has RSD (what Paula Abdul has, it is characterized by chronic debilitating pain - sound familiar?!?) and arthritis and asthma. She has been on Protandim for less than a week and she says it has helped both her arthritis and her asthma!! Awesome!! She said she hasn't had to take near as much asthma meds and this is in a little less than one week of taking the supplement! I am so excited by this! She is an awesome lady! I am going to send a sample to her brother-in-law next. He has scleroderma, which is an autoimmune disease causing tightening of the skin. Hopefully, he will find some relief in Protandim.

Still have free samples left! If interested just click on the link to the left.

Much love,

Tuesday, May 11, 2010

Back From Tiff's

Well, I have fabulous news to report! Tiff said that the fascia was completely out of the way and she could get to the knots easily!! Yay Protandim!! She was stunned in disbelief. She told me that she has people come in all the time trying to get her to buy/sell supplements and all natural remedies for pain relief and they are all crap (her words). Tiff said this is the very first time that she has felt palpable proof that a supplement worked in healing the body! She is now trying the six day trial that I am offering to y'all PLUS she is offering my information to all of her clients and has my Protandim newspaper on her practice table. I am so very happy that I will be able to help others :)) I can't wait to start hearing from all of my Chiarian brothers and sisters who have requested samples. They should be receiving them in the mail today!!

Much love

Dreary Weather, Beautiful Day :))

Well, the weather is horrible here in Northeast Indiana. Lots of rain and overcast. Before Protandim, I would have been in excruciating pain as soon as I woke up (hell, it probably would have woken me up!). After Protandim, I woke up having no idea it was raining till I heard it hitting the house. No pain at all. Not even a shadow of a headache! My poor teenager has inherited my migraines and she woke up in horrible pain :( I think I will start her on Protandim as well.

Talked with Ann Hood again yesterday. She is adding Dr. Di to the list of recommended docs on WACMA! I am very excited about that. I am to call her back tomorrow to discuss my blog and endoscopic decompression. She rocks! Ann is as passionate about getting the word out as I am!

Well, it is off to Tiff, my massage therapist, to see if Protandim has helped my muscles again. I will post when I return :)

Much love

Friday, May 7, 2010

Quick Update...

Well, it is raining here in northern Indiana this morning. Normally, rain would equal misery because I would have a raging headache thanks to the weather and barometric pressure change. But, guess what, I don't even have a hint of pain! NONE! I love Protandim :))))

I also want to send love to Rich who just flew out to San Fransisco to perform a couple concerts! He took his parents with him :) Isn't that sweet? He's adorable! Anyway, he has a Protandim meeting over there as well so I cannot wait to see what info he brings back for me! Let's all send good thoughts his way for a successful concert and meeting. If you're in the San Fransisco area look up Rich Hardesty and check out his concert. If you have any Protandim questions, I know he would be happy to talk with you :)

Here is to a pain free day for all of you,
God Bless!

Wednesday, May 5, 2010

Protandim Arrived!

I have mailed out the samples to all those that asked :)) I am so excited to hear your experiences. If there are any other Chiarians that would like to try Protandim for free, just send me an address and I will get it to you. This is truly exciting for our community!!

Tuesday, May 4, 2010

Conversation with Ann Hood (WACMA)

I wanted to tell y'all about my conversation with Ann Hood (WACMA - Chip's sister). Many of you, if not all of you, are members of WACMA so I am sure you know who Ann is. Anyway, I talked with her last Friday regarding getting the message out to Chiarians about endoscopic decompression. I had noticed on WACMA, that all the info was really about the old school zipperhead surgery. First, let me tell you that she is one great lady! She was a hoot! We talked about exactly what endoscopic decompression is and who qualifies for the surgery. She was very interested in what I had to say. I told her that the leading Chiari doctors (Oro and TCI) don't promote it because there is no money in a surgery they cannot perform. Endoscopic surgery takes amazing skills and tedious training. It is hard to perform brain surgery on a TV screen! Dr. Di developed some of the instruments he uses in the surgery because it is so new they didn't exist. Ann said she was going to shoot one of the TCI docs an email to ask why they do not provide the choice of a much less invasive decompression with a much quicker recovery time and a shorter hospital stay (24 hours for me!)! Isn't that awesome! Ann will get us some answers :) I just love this lady!! She was so supportive. She is going to put a link to my blog on WACMA's site!! How cool is that? She had to go out of town for a week but I am to call her next weekend to go over what TCI said and to see how else she can help me spread the word. She gave me contact names of key players from other sites and I am going to contact them to see if they would be willing to help educate our community on the endoscopic alternative. I started this blog to help my Chiarian community. Between having Ann on my side, this blog's success, and Protandim, I am realizing my dream of paying it forward! Here is to all of those who helped me get well, now I am well enough to help others... full circle :)))

Life is good!

Sunday, May 2, 2010

Update On Samples...

For all of you who have written me requesting a sample, it did not arrive this weekend. I am hoping that it will be here Monday. Oh, and one more thing, I found out the easiest way to get it to you is to send it regular mail in an envelope which only requires a stamp. This means I will not need reimbursed for shipping it to you. I thought it was gonna be a bigger deal shipping it since it is a pill, but Rich just sent my six pills wrapped in a paper towel in a 44 cent stamped envelope. Works for me! I can afford a book of stamps, LOL :))

FYI, I still have samples left if anyone is interested. What harm is there in trying something that may relieve some of your symptoms and give you better quality sleep which in turn makes you feel more energetic and alive? Especially when that something is all natural and FREE!! I plan on following those who are trying out the samples, as much as they will allow, and reporting it on here. Hopefully, Protandim will make as big of a difference in their lives as it did mine!! I am so happy God has afforded me a way to help my Chiari community! I feel so useful now! So many years wasted, sitting on a couch, feeling useless and helpless. Now, I have the power to take control of my own life and the blessed opportunity to make a difference in the lives of others!

I had a lady contact me from Florida who has requested a sample of Protandim. She is in bad shape and nothing seems to have helped her. Her husband even reached out to me! How beautiful is that!! You could feel the love he put into the email. Anyway, Rich (the Singer) will be in Florida in the next month or two and if all goes well with the six day experiment, the couple who wrote me want to meet with Rich. That is why Rich will be down there, he is talking with a group of folks down there who are interested in Protandim. So, my point is this, if any of my readers are from Florida and would like to meet Rich and talk with him about what the supplement is and what it can do for them, just let me know and I will make sure you meet! He is a very kind man and getting the word out about Protandim is his passion. He believes so strongly on the healing agents in this supplement. So do I, as I have witnessed it for myself! The weather is horrible here in Indiana. It is raining and overcast, I should be a throbbing painful mess. But I am not. Can only attribute that to Protandim! I am so excited for those of you who are trying it!! I cannot wait to read your take of the supplement!

Thursday, April 29, 2010

My little experiment...

Ok, so I am performing a little experiment on my body. I stopped taking Protandim two weeks ago and went to the massage therapist last Tuesday. She was in awe at how tight my fascia was; the muscle knots wouldn't budge. (This is in sharp contrast to when I was on the Protandim and my usually cement muscles were more like molding clay!) According to her, I am a mess! Thanks Tiff!! Anyway, the Singer sent me six pills till my order could get here. I received his pills yesterday and started taking them immediately. Now, keep in mind that I have had non-stop daily headaches for the last week and a half or so - ever since I ran out of Protandim. Well, took Protandim last night and guess what?!? NO HEADACHE THIS MORNING! I swear God put the Singer in my path to deliver this miracle to end my suffering. More importantly, it has always been my dream to give something back; to help my community in some way. Now I have that opportunity. It is a dream come true :) Anyway, my experiment is to go back on Tuesday after 6 days on the supplement and see what she feels. She is also in on the experiment. As I mentioned before, she is going to display info at her massage business and advice her medical clients about Protandim. She is eager to see the miracle repeated.

By the way, I am tired of typing "The Singer" so I asked him if I could use his real name on my blog. He said absolutely. I haven't thus far because this man makes his living with his voice and name (his band has his name) and I didn't want to do or say anything to jeopardize that. My decision, not his. Anyway, his name is Rich Hardesty. You can google his name and find out all about him. He is sort of a free spirit, lol! Google him and you will see what I mean. He is the friend that gave me my first bottle of Protandim. It cost him money, but he did it out of the kindness of his heart and his compassion for humanity. I told him about our condition and the daily pain that comes with it. He knew he had something that could potentially help me, so he shared his private stash. He has a big heart :)

Rich texted me about this girl he met who has a suprasellar arachnoid cyst that she has had since she was three. Arachnoid cysts are found in folks with Chiari due to the build up of cerebral spinal fluid. Anyway, Rich turned her on to Protandim and she is excited to give it a try. He asked if I would talk to her, which of course I agreed to. Everyone needs someone, and while our disorders are different, they are close enough to relate with each others' struggles. Some of you out there may actually have arachnoid cysts, so you could probably totally relate. I told Rich that I want to hear her updates because it directly affects our Chiari community. I cannot wait to see what Protandim does for her! I will keep you posted on both her experience and what Tiff (my massage therapist) finds next Tuesday when she is trying to break through the cement wall that are my back muscles.

Much love!

PS I am so excited for all of you that are requesting the samples! My order should be delivered tomorrow, possibly Sat. I will send them out to you as soon as I get them! Just remember to keep my posted on your experience!! I can't wait to hear what Protandim has done for you in the short six days you will be trying it :)))

Wednesday, April 28, 2010


I seem to have confused some of you as to where to get Protandim. I have recieved a few emails asking which stores carry it. Unfortunately, none that I am aware of. First, I strongly suggest you take me up on my offer to send you a 6 day trial of the supplement. Why spend money on something unless you know it will work for you? If you do want to purchase an entire bottle, you can get it by following the link to the left (or clicking on "Protandim") and clicking shop or enroll. There is a wealth of knowledge within the link that you can view, including a Prime Time live report on Protandim. I know they sell Protandim on ebay (just be careful). I think that is about it. If you want more information on Protandim, send me your name and number and I would be happy to have the Singer talk with you. He is a love :) He is only in this to help people after he saw what it did for his mom (who has MS) and his dad (who has a brain tumor). He is a good man who is sacrificing a great deal to support his parents. He moved back home from Los Angeles to Indiana to take care of them and uses a great deal of his own money (he has a successful singing career and a cult following from college students) to support them. How many men do you know that would put their dreams on hold to take care of their ailing parents?

The Singer is the one who gave me my first bottle because he felt sorry for me, lol. (I am pathetic when I am in pain :) After taking Protandim for a month I was astonished at how fantastic I felt. The most amazing thing by far was the complete and utter lack of headaches!! When I found out that you can only get the supplement from a distributor (basically you have to know somebody who knows somebody), I decided the best way to get it to my Chiari community was to become a distributor. I didn't do it for the money, it actually cost me quite a bit to become one and sales is not my thing. I simply did it to offer y'all an easy way to get your hands on a supplement that could potentially help you to feel better like it did for me! If you don't want to buy it from me then buy it someplace else, please just try it! Take advantage of my free samples! I implore you because I know what it is to suffer endlessly, without hope.

What a miracle Protandim has been in my life! When I am taking it, I am no longer in pain. I feel no aches or throbbing or burning in my shoulders and neck. I feel so unbelievably normal, like I don't have this horrible affliction known as Chiari. I feel 20 again :))))

Monday, April 26, 2010

Supplement revealed!!!

The name of the supplement is Protandim!! Changes I noticed whilst being on Protandim: complete cessation of headaches, better quality sleep, higher energy levels, lessening of my peripheral neuropathy in my foot, and my skin cleared up and softened! Another unexpected miracle is my fascia released (tight fascia caused debilitating pain in upper back and neck)!!! My massage therapist has been working for over a year to get through my fascia which she says is so tight that it distorts my muscles into horrible knots. She said I am the worst case she has ever seen. She was about to send me to a specialist in fascia release so that she could get to the knots. Two weeks into the Protandim experiment, she got through easily! My knots were almost none existent! How can that be?!? I have suffered for years!! I have no idea how, but the Protandim is the only thing that I had changed. My massage lady is so impressed (she works almost exclusively with medical massage), that she is going to tell all her clients about my story and Protandim. She has asked me to drop off information that she can copy and hand out to them, as well as leave in the waiting room of her business. How cool is that! She is amazed at the difference she sees in me after taking the supplement.

After talking with my husband about Protandim and the miracle it has been in my life, he decided to fund my distributorship. I am very excited. I already have half the town were I live ready to try it! They have seen the difference it has made for me. If you want to get it somewhere else, please do! Just get it! Try it! You will not believe how differently you feel, even within a week! There is a link to the left which offers more information for those interested.

Personally, I would have never bought it if the Singer hadn't sent me home with a bottle. So I am offering the same to all of you; a free sample (now I can't give out a whole bottle to everyone, but I will give out a 6 day trial sample which is all you will need to see a difference)! If you want to give it a whirl to see if it changes your life as it did mine, or you have any questions regarding Protandim, just email me direct. If you want the sample; send your name, address, phone number and a brief description of why you want to try Protandim. I get a few free bottles so I will divvy them up and send them out to my Chiari family. Pay it forward, I believe is the expression. I do ask that you pay for whatever it takes to get them to you. I am not a rich woman, lol, and I am assuming that I will have a lot of takers.

Unfortunately, I ran out of the supplement a little over a week ago. The headaches are back, fierce and daily. I had forgotten what it was to be in chronic pain :( I have taken almost all of my Axert (migraine med) because the weather keeps changing and that is always a trigger. When I was on the Protandim, I had no headaches! NONE! Not even migraines with weather change! Since stopping the Protandim, my massage therapist says I am right back to the tight fascia and muscle knots :(( I am in so much pain. This is the reason I am a week late in reporting my findings to y'all. It is hard to think past the headaches, but I am preaching to the choir.. you are the one group of folks whom I know can understand. I can't wait to get my new bottle of Protandim! I want to be a normal, functioning human being again :)))

Love to you all!

Thursday, March 25, 2010

Almost there...

Well, I sent the singer all of the emails I received in regards to the supplement. This is what he wrote back:

This is amazing. You are the ring leader for your condition. Wow! I passed this on to Scott and Linda. I am going to share your story with the Dr. and CEO on April 16th when I am at their house if you don't mind. You can really help so many people and it is touching to read their notes and how they are reaching out for hope. Talk to you soon.

Don't worry, I set him straight on the ring leader part :) I told him I am more of the red-headed step child of Chiari. I don't follow the rules (i.e. I am not a sheep of TCI). I am more the kid they want to lock in the closet because I do my own thing -- ALWAYS. If it doesn't feel right or something is hinky or the facts just don't add up, I question. That is how I ended up finding Dr. Heffez and Dr. Di. I diagnosed myself and then just found a couple doctors who thought outside the box. Being a free thinker is what led me to Endoscopic Decompression rather than the standard cave-man approach offered by most of the Chiari docs. And that same attitude of defiance, of refusing to believe that I have to live with this broken pain-filled body, is what led me to take a strange pill handed to me by a friend. (Well, that and perhaps the hand of God.) Doctors would scoff and mock me, they usually do, but I am in charge of my own destiny and was pleasantly surprised by how many of you were too.

I will start week three on Sat. My trial is almost finished. At the end of my trial, I will give my review and name the supplement. I am extremely analytical and what I don't want to do is give false facts or offer false hope. However, this product appears to be the real deal. Today was horribly overcast and rainy, very conducive of migraines for me. Well, no migraine today! My foot is still doing wonderfully. I am sleeping so much better and waking up refreshed, my sleep is filled with dreams I can remember (this means lots of REM sleep!) and I feel just a basic wellness. I offered my body as guinea pig. Please be patient. I promise I am not keeping it secret, just trying to be accurate. I am trying to figure out how to even get it to y'all.


Tuesday, March 23, 2010

Un-Freaking Real!!

Ok, I am two weeks into my supplement trial and I noticed yesterday that I couldn't feel my foot unless I really concentrated! Now I know what you are thinking; "Oh Lori, how horrible!". But you are wrong. It is a glorious development! I have had peripheral neuropathy in my left foot for years. I always feel my foot -- ALWAYS! It drives me mad! It keeps me from sleeping! Ugh!! This supplement has done for me what the neurologist at the Cleveland Clinic could not; it gave me relief from my neuropathy! Amazing grace, how sweet the sound...

I have been bombarded by requests for the name of the supplement. It is not sold in stores. The pharmaceutical companies do not want this product on the market. They can't make money on it :) Finally, something that can help our community which suffers so greatly and is offered such little hope. There is already testimonials in regards to MS, migraines/chronic headaches, chronic pain, fibromyalgia, and neuropathy. A side effect seems to be weight loss!! HELLO!! Most of the meds the docs have me on have far less desirable side effects, lol!

The singer (my friend who introduced me to the supplement; I call him this because he is the singer of a band :) is being flown by the CEO to CA to have a private meeting with the creators of the supplement. It is backed by some pretty impressive people. The singer has graciously offered to take whatever questions I have to the big wigs and bring back the answers. I am going to go ahead and extend that offer to my Chiari family. What would you like to know? Tell me your story. I will forward everyone's story to the singer and he can take them with him to CA. He can show them the incredible need our community has. We can have a voice in revolutionary, all-natural healthcare that will change our lives forever! I may sound a little overzealous here (or perhaps just plain nuts) but I have tried it myself and I have noticed the changes in my body! I am one of you. I have been where you are and felt what you feel. I believe this product has changed my life and now I am going to change your lives! The singer blessed me and now I want to bless all of you!

SEND ME YOUR STORIES! TELL THE SUPPLEMENTS CREATORS YOUR STORIES OF PAIN AND ALL OF THE MAN-MADE POISON THAT THE DOCTORS HAVE PUT YOU ON THAT ONLY MADE YOU FEEL LIKE CRAP!! Just a paragraph of two, please. You can send them to me personally via my email which is in the profile or you can put it in the comments. I want to send as many stories as possible! He leaves at the end of this week, so please hurry!

God bless :)

Wednesday, March 17, 2010


Ok, not really sure if there is a link but my sinus infection is almost completely cleared up. I am still blowing my nose like crazy BUT I can breathe through both sides. That hasn't happened in 3 months! Hard to believe it is the supplement already, it has only been four days, but it is the only thing I am doing differently. I was told that it eliminated inflammation (sinus' were swollen almost shut). This is pretty exciting to me! We all know, as Chiarians that swelling is a part of the bargain. Especially if you have other conditions related to the ACM such as POTS. I happen to have Sjogrens as well and am eager to see if this helps my joints.

And the watch continues...

Monday, March 15, 2010

New Breakthrough in Anti-Aging help for Chiari Peeps Too?!?

Ok, so I was visiting a friend down in Indy when he turned me on to a fairly new supplement. It has been featured on main stream television and uses five natural ingredients combined to produce a powerful pill that restores cells back to the health they enjoyed as a newborn! This is a pretty big claim but it is currently being backed up by research in 14 major universities studying this pill. My friend gave me a bottle to try for a month. According to him, it helps with inflammation. He discovered the pill whilst trying to help his parents; his mom has MS and his dad has a brain tumor. He swears it has helped them both and countless others. I am very excited by the research. Although its original use is anti-aging, it is possible that this could help with our Chiari. For instance, I still have migraines and peripheral neuropathy in my foot. It has already helped his friends who have headaches. What if it gets rid of the tingling in my foot?!? I am uber excited to be your Guinea Pig. I am on day two. As the month progresses, I will keep you updated on any progress.

FYI, I have had a sinus infection for 3 months now - cannot shake it. I have been on every anti-biotic and nothing has worked. My doctor said my next stop is the ENT. I am eager to see if this pill can help with the inflammation in my sinuses.

Stay tuned...

Monday, February 22, 2010

Exciting Decision Reached!

I just have to share my exciting news with everyone! A life altering decision has been reached. I will be pursuing further education after my imminent graduation in May. I will graduate with High Honors and a Bach. in Business Administration specializing in Human Resources. However, this is not my passion. I have decided to pursue either a BS in nursing or a master's. There are accelerated programs for both. The BS would take about a year and a half. The master's would take three. I have even thought about applying to Yale's Graduate Entry Prespecialty in Nursing (GEPN) program. This results in a master's degree in three years of round the clock study. I am so excited!! If I don't choose Yale, then I will go to one of two universities in Indiana that offer accelerated Bach degrees in nursing.

Anyway, my point is that I am going to go into the medical profession because it has always been my passion and because I have personally experienced the profession from a patients point of view. I have seen what a great RN can do for patient satisfaction and care.

I am researching more but I think this is my path. Maybe the ten years of pain and suffering was not for naught. Maybe I will become a nurse who works with Chiari patients. I would have to work for Dr. Di or Luciano at the Cleveland Clinic though since the rest of the Chiari docs and I do not see eye to eye (zipperhead vs. endoscopic).

Wish me luck!! I could use the support. I will keep you updated on my progress.

Wednesday, January 20, 2010

My Vanderbilt Experience

First, I would like to start with how much Nashville impressed me. I loved it there! Everyone was very friendly and the city, itself, was beautiful. There are so many active people there! I couldn't believe all the walkers and joggers. We saw the Parthenon whilst there. It was amazing! I'm sort of a geek that way, I guess. I loved the history and culture, never mind the 40 foot statue of the Greek Goddess in gilded gold :)

Ok, on to my hospital experience... Vanderbilt, as a hospital, was pretty run down looking. It was definitely no Cleveland Clinic. The biggest difference between the two was that at CC, they have red coats. Red coats are literally customer service/guides in red coats who stand around in various parts of the hospital. You can walk up to any one of them and ask for help and they will help you; whether it be guiding you to your next appointment (very easy to get lost in the giant hospitals) or getting you a wheelchair, etc. These folks would have been helpful during our visit at Vanderbilt. That was probably the biggest irritation we had.

My first appointment involved a blood volume test. This test was fascinating to me. They developed the test, from what I can understand, specifically for people with POTS. Anyway, they take a vile of blood as a control then they inject you with this radio active stuff. Then, at 6 min. intervals, they draw out a vile of blood. I can't even tell you how much they take all together, but it was a lot! Oh, I forgot the best part, you have to drink this awful salty crap so that the radioactive stuff doesn't collect in your thyroid and kill it. Mine doesn't really work all that well anyway (autoimmune disease killed it) but just to be safe and protect whatever is functioning, I had to drink it twice a day for three days. Yuck! Nothing covered up that taste :( The nurse was super cool though. She let us stay in that room and sleep until our next appointment. We had drove all night and slept an hour or so in the parking garage. We were tired!

My second appointment of the day was a treadmill test. I never realized how hard those were! They make you stick a tube in your mouth to measure oxygen and then they plug your nose. The treadmill incline and they speed it up periodically. Mind you, I hadn't taken my Pindolol (beta blocker) in three days so my heart was racing! That tuckered me out. This was my last test for the first day. Afterwords, we went to our hotel room. We stayed at the Millennium Maxwell which was really comfortable and fairly cheap. My only complaint was that the bath tub flooded when you took a shower. Later that night we ate Jimmy Johns (YUMMY) and saw the Parthenon (a must see if you have never been). The Parthenon is the only exact replica of the original Greek Parthenon. Beautiful.

The next day, I had a Q-Sart (sp??) test. This was a very uncomfortable test. They sand paper a spot on your arm and two places on your leg and one on your foot. Then they wrap what looks to be a weird Velcro watch around those spots and then they circulate this horrible liquid underneath the weird looking watch head. Let me tell you what, it hurts!! It burns and stings so bad that I thought I would go mad! It is like a thousand bees stinging you on top of the worst case of poison ivy you've ever had! It is meant to induce and measure your body's ability to sweat. The results never did come in on this test so I will have to update later.

The final test before doc was the ANF (Autonomic Nervous Function) test. It was very simple. They give you an EKG and then they test your blood pressure and heart rate reaction to blowing against resistance. They also take your blood while at rest and after standing up. They make you take deep breathes for so long and monitor your reaction to that as well. Then they make you go from lying down to standing up and measure the difference (same as they do for the tilt table).

Finally, I saw Dr. Raj. Well, actually I saw another doctor first. He sent her in because he was held, up but she was very thorough and I really liked her. She explained that what they found over the past few days is that yes, I have POTS. My cardiologist laughed POTS off and insisted I had Inappropriate Sinus Tachycardia (IST). Doc said there is no way that is the case because at rest my heart rate is normal. Anyway, the biggest telling piece of evidence they received from the tests besides the POTS (which the ANF proved because when I went from lying to standing, my heart rate jumped 30+ beats) is that I have slightly low blood volume and moderately low red blood cells. Low blood volume is causal for some POTS patients. So, now we are working on finding out why I am anemic.

Oh, even cooler is that I volunteered for a genetic study. They took my DNA and will use it for research into the disease. I thought that was just the coolest! I told the doctor that if they ever cloned me to let me know so I can drop of the kids to my clone and go on vacation :)

Well, I will update when something new develops.

God bless!

Monday, January 11, 2010

Vanderbilt Dysautonomia Clinic

Well, tomorrow I am off to Nashville, TN. They have one of the only Dysautonomia clinics in the country. For those of you who do not know what this means, Dysautonomia is the dysfunction of the Autonomic Nervous System (ANS). The ANS controls all the bodily functions that do not require conscious thought, such as heart rate and blood pressure and digestion. This is very common in ACM patients because the cerebeller tonsils crush the brain stem in Chiari.

I have been diagnosed with Inappropriate Sinus Tachycardia (IST), POTS, and slow motility in digestive track. I can't really exercise or take a lot of stimulus. My heart races if I watch an action movie, for cripes sake, and that is on heart pills!! I want to know if there is a medical reason other than Chiari. Perhaps there is a better treatment out there than the 6 different pills I take a day just to function like normal folk. I know a lot of you know what I mean. Chiari crushes the brain stem which is the keeper of all nervous system function. I still have peripheral neuropathy in my foot. Most likely, that will never go away. I would just like to be able to go on a walk without running out of breathe and feeling like my heart is going to beat out of my chest! I saw Avatar a couple of weeks ago. (Great movie, by the way.) I had to take a Xanex to watch it because the action excites my heart and sends it into what idiot doctors said for years was a panic attack. Man I am so glad I am past that stage of diagnosis!! If one more doctor told me that I was just a hysterical woman on her period and that I just needed to calm down while my heart rate was 180 from standing up, I would be typing this from prison -- LOL!

So anyway, I will write about my experience at Vanderbilt when I get back from TN. Wish me luck :)

Oh, and PS, I have had this appointment for over a year! That is how sought after they are and how difficult it is to get in. I have high hopes they will be able to help me. My lips to God's ears.
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