Saturday, March 10, 2012

New Cardiologist Was Great!

After a lot of contemplation, my husband and I decided I should make an appointment with a new cardiologist. Even though I started to feel better, my better half convinced me it was worthwhile to just make sure everything was OK. I dug through my records and it's been like 3 years since my last echo, holter and EKG. The first nightmare office cancelled my echocardiogram on me at the last minute which was a blessing in disguise. They wanted me to re-schedule, but I just cancelled everything with their office. I am not about to go back to some lady who had no respect for me at all. It was maddening.

I wasn't expecting much with this new doctor because why in the world would I let myself down again? Well everything went so much better than expected. First off the doctor was male and younger, which sadly I think usually helps me. I think in the very least they feel empathy. I don't normally do so well with women doctors.

Yay for Happy Nurses

It started off well because the nurse was friendly and sociable. Believe it or not, but this nurse had rheumatic fever at a young age and was telling me all about it. She said it was so very painful, scary and she got really sick before they figured out what was wrong. She had the same joint and bone pain I had suffered from. But in her case it took them over 4 months to figure out what was wrong.

Wouldn't you know this office actually did an EKG! WOW it's incredible that a cardiologist would  want to hear and see what my heart was doing? Outrageous! That came out fine, which it always does except for a short PR interval. I've had that on my EKG's for years. I figure it is somehow related to POTS and norepinephrine.

The doc came in and I think I chuckled a bit because when I went to find him online to see reviews, I actually found his Facebook page...LOL That was a first... I felt a little weird that it had been his page...hahah

We talked for a while about the strep. It's onset. When I got the erythema nodosum. My other symptoms. etc The usual stuff. Then we started talking about POTS and he wasn't condescending about it, at all. He knew a bit about it, but admitted that he normally doesn't see POTS patients and most of his patients are "2 or 3 times your age, so bear with me". HAHA! One thing he said was in this area of PA, POTS is much more common than on the eastern side of the state. I found that interesting.

He had me do the normal, breath in, breath out nonsense when they listen to your heart. I always get lightheaded when they ask me to do that. UGH! But this time he said, take a deep breath in and hold it. I am holding it and thinking, "Oh my I need to let this out now." As soon as he said, let go, I let the air go and my heart started skipping beats. It was awesome! HAHA For the first time, someone got to hear firsthand what my heart does when I'm singing, talking a lot or in one of my PVC phases. I told him my heart will go through phases where it does that every time I breathe. I was just glad he heard it.

I have a new heart murmur

He said I have a murmur and I must have made a face because he went, "it isn't serious". I said I wonder if it is new because I've been to many doctors and I've never been told I have one.

Now if we take a step back in time here, about a month ago, I had that other terrible cardiologist listen to my heart and said it was fine. "Nothing is wrong! I don't hear anything unusual" So either something happened since then because of the strep or she just sucked at her job. I'm thinking the latter.

All and all it went very good. I don't expect miracles with this doctor. He does want me on a beta blocker though because he is concerned my HR is up too high all the time and he didn't like the shortness of breath I was describing. He could tell I was the hyperadrenergic POTS just being in the room with me. He said I am definitely always in fight or flight mode. :( If he only knew! I told him that I was sweating buckets and was shaking. I think he could see it...At the next appointment he wants to discuss the whole beta blocker thing because I was skeptical. In case any of you weren't readers while I tried beta blockers the first time. They are amazing at first, but over time it starts to affect my blood circulation. I developed chilblains on my toes and I started to weeze and feel as if I couldn't get enough air in.

Holter and Echo Scheduled

I am getting an echo done and a holter monitor placed on March 19th. It's a great day because I have to get my nephew off the bus that day, so I will be running around. :) The weather is also getting warm again and I can already tell I'm not much better than last year.

That is all for now. I am still waiting on my 23andme genetic test results. My spit sample didn't have sufficient amounts of DNA in it, so I had to send in another sample. Hopefully this time it will work and I'll have something to report by the end of the month.


IC said...

I began to read your posts because of your experiments with Keratosis Pilaris. That said, my research has led me in the opposite direction from what I see you doing. For example, I'm guessing that you're taking mega doses of some of these:

Vitamin C
Vitamin E
Hyaluronic Acid
Potassium (as needed)
Niacinamide (B3)
Milk Thistle

Are you aware that consuming large doses of certain vitamins can cause deficiencies in other vitamin groups? When I hear about inflammatory diseases like allergies, Erythema Nodosum, and hives, I immediately think of a person who has vitamin deficiencies. A vitamin deficiency could have been caused by anorexia or a digestive disorder of the small intestine. The small intestine is where vitamin absorption takes place. Whatever the case, you should stop the practice of mega dosing of individual vitamins and start taking a good multi-vitamin, multi-mineral, and a also a mutli-amino acid regimen. By good, I do not mean the Walmart brand or any other tablet formulation. Instead, I would recommend a capsule formulation in the PureCaps, Solaray or KAL brand. Solaray has a Multi-Mineral. They also have a High Energy Multivitamin and KAL has a Amino Acid Complex.

I would also recommend that you discontinue use of the following:

Hyaluronic Acid
Milk Thistle

For inflammatory diseases of the soft tissue, I can't recommend Quercetin highly enough. That said, the inflammatory response can be remedied with supplementation of fat soluble vitamins alone. If you have time, I'd also recommend watching the documentary about juicing, entitled, Fat Sick and Nearly Dead by Joe Cross. In the documentary, people lose weight and improve their inflammatory skin conditions through diet alone.

With regard to iodine supplementation using Iodoral; it may have contributed to the Alopecia Areata and low sex drive. That is because excessive intake of potassium iodide can cause deficiencies in zinc and magnesium; both of which are critical for hair growth and sex drive.

The intake of magnesium is a complicated process as calcium competes with magnesium for absorption in the small intestine. This means you should take these at different times. As for zinc, there are special considerations here as well, the recommended daily allowance is 15mg; however, that is not nearly enough to reverse a deficiency. If taken with food, zinc is well tolerated in stepped doses from 50mg to 150mg per day. If you take it before eating or take it afterwards, zinc can cause nausea, upset stomach, and vomiting.

Finally, I want to say that I'm not speaking about these things as someone who merely likes to give advise. The truth is, I have had most of the symptoms that you list:

VERY sensitive to heat and humidity (CHECK)
Cycles of Weight loss/Weight gain (CHECK)
Some heart palpitations (CHECK) [2005-2010]
Dizziness/lightheaded/"white vision" when standing; Pre-Syncope (CHECK) [2006-2008]
Sensitive to salt intake and fluid retention (CHECK)
Alopecia Areata [2006-2007] (caused by excessive Chromimium intake)
Overact to everything (CHECK)
Easily brought to tears or crying (CHECK)
No sex drive (I did not have this symptom; however, I supplemented with zinc periodically from 2001)
Frequent urination [2001-2002, 2008-2010] (CHECK)
Hives [2006-2008] (CHECK)
Keratosis Pilaris [1993-1995, 1997-2011] (CHECK)
Erythema Nodosum
Skin Rash [2006-2007] (CHECK)

In 2010, I began a regimen of a multivitamin with Zinc and Selinium and the symptoms of hives caused by food allergies disappeared. I was previously treating this with Probiotic, Quercetin, bromelain, and Vitamin C. I had also experimented with B-Vitamins; however, the only symptoms to abate would be the frequent urination. In 2011, I added a multi-mineral to my regimen and found that other symptoms (including muscles aches and fatigue) have disappeared as well.

May God Bless You,


Birdlady said...

I usually just ignore comments like this, but I am responding to this one. :) lol

You have taken out of context the way some of these symptoms began, so I feel you have done a great injustice here.

First off, I am not taking those mega doses of vitamins any more nor any of the medications you are telling me to discontinue. I was taking those supplements only when I was chelating. Notice that it is under the tab, "My mercury chelation protocol". I haven't chelated for well over 6 months. I only took the prednisone for a short course, so I feel you took bits and pieces of information presented on my blog (which I had taken a rather long break from) and then made judgements based upon an unusual life-threatening allergic reaction due to chelation. In that specific case I took the pred and dexa injection because I didn't want to die.

I take zinc, but only in maintenance doses because my NutrEval test said my zinc was pretty good. Did you happen to read the results of that test on my blog? If not, then I suggest you read those posts entirely. I have a lot of issues taking supplements and that test proves I have issuse assimilating B vitamins.

The allergies and hives were directly caused by chelation. I really feel like you went through my blog and gathered every symptom I ever said, but didn't take the time to read further. With many of the symptoms it took me a while to figure out exactly what was going on with them. The hives took me 3 years to definitely point the cause as chelation. I do not get hives or rashes, unless I am chelating. In 2008, I was unaware that was the issue and thought it was food related. It was not.

Erythema nodosum. This was directly caused by a strep infection I had back in Dec 2011. It has since cleared up on its own without me having to take pred, Thank God, and I'm hoping it will stay away for good. Although just in the last 2 days my ankles have been hurting again. Strep can last in the body for years and you have to just keep an eye on it. I recommend reading more about this condition because you don't seem familiar with it.

Alopecia areata. Iodine triggered the autoimmune attack on my body. Then chelation is what cured that for me. My hair has been normal for many years now. I have pictures on the left side bar of the progression of the hair loss if you are interested. I never posted a completely healed picture, but I assure you it is all normal now.

In the symptoms you listed from the section "My Main symptoms", you conveniently left off POTS which actually makes me angry. You cherry picked my entire blog and then leave off the one thing that leaves me completely debilitated? Wow! POTS encompasses every single symptom on that list. POTS is the reason why I have chelated, why I've done all of the things which have hurt me on this blog. If it weren't for POTS, then I wouldn't have had the hives, rashes, taken pred or anything else. I also have symptoms crossed off at the bottom, which I no longer have due to going on HC, dhea and chelation. As I said on that page, I kept those on there to remind myself, I have made progress. Interestingly your symptoms went away for completely different reasons mine went away.

I think it's important to remember that things aren't as easy as it may seem. I don't post every single detail about my health or every single supplement, vitamin or treatment I have tried. I usually just pick the ones I think people would be interested in knowing more about.

When it comes to a chronic illness like POTS, what works for one person, may not work for another. WHy? Because the symptoms are probably due to a different underlying cause. Still today so many people online tell me they know EXACTLY what is wrong with me!!!! It's that my adrenals are weak and if I fixed that I would be cured!! Well when I tell them I am taking a replacement dose of HC, then they say I'm not doing it right. It's always the person's fault and it's never the fault of their advice...

IC said...
This comment has been removed by the author.
IC said...

I'm very sorry to hear that. The intent of my post was not to "judge" as you claim; but merely to point out that vitamin deficiencies could be the underlying cause of your illness. I have not seen anything in your posts tO suggest that you've tried nutritional therapy with a broad spectrum vitamin/mineral/amino acid. For this reason, I don't think it was out of line for me to recommend this approach to you.

As for the POTS, I understand that POTS is your medical diagnosis. I removed it because there was not enough room with the 4000 character limit and I thought that particular diagnosis was covered by the symptoms of heart palpitations & dizziness/lightheaded/"white vision" when standing; Pre-Syncope. I should point out I also removed Irritable (very very very very irritable), Exercise Intolerance, and Heavy feeling all over the body in an attempt to save space.

Finally, I will say that it's sad you responded the way that you did. My intent was to help you with your illness. And yet, you responded with mockery and condescension. Your response tells me that you're a self-centered and ungrateful person. And if I've learned anything in this life; it's that you should never help ungrateful people.

Birdlady said...

I'm sorry you don't like the way I responded to you. I didn't particularly like your attitude either to be quite honest. You seemed so authoritative in your advice "Do it this way". Meanwhile so much information contained in your post were misrepresentations of my medical history. How can I take your medical advice seriously when so much of your data about my history, symptoms and treatments I've tried were so inaccurate?

I agree with you that vitamin deficiencies are quite important to rule out. I'm not sure I have ruled them out, but what I do know is that I have a lot of issues with multivitamins. I react to so many vitamins within them and it's best for me to take 1 thing at a time to make sure I don't become very ill.

Good luck to you.