I started the day off today in tears. I mean like the sobbing, uncontrollable I hate everyone and everything tears. Fibromyalgia is a word I have feared my whole life. I know people with it and I have seen them suffer. But whether or not I accept that "label" is my choice....b/c that's what Fibromyalgia is. It's a label to classify a group of symptoms (of which every single one I have) that no one can explain or help or cure. BUT Functional medicine has something to offer conditions like Hashimotos and fibromyalgia......... they don't just treat the symptoms..they LOOK for the root cause. They dig deep. it takes ALOT of testing and ALOT of money.......but in my opinion, it is worth it if it means a CHANCE at getting my life back.
There are MANY chronic diseases that can cause the symptoms that are classified as fibromyalgia. In my case we think it might be Lyme disease and co-infections. I am not sure I have all the symptoms of Lyme but we are testing for this this week and if it is successful I will undergo a very aggressive treatment plan involving many weeks (like around 8) where I will need IV treatments of antibiotics and other functional medicine therapies to treat it. Like my doctor said, 'we want to attack it hard and fast' to have the best chance at success. This therapy/treatment should attack/address the Lyme, co-infections, candida overgrowth, leaky gut, glutathione (since I dont' really have any b/c of my double gene mutation and it's key to detoxing the body and helping with inflammation). ...and more things that honesetly I can't even remember right now b/c my brain feels like it's going to explode.
if it's NOT lyme...i guess we continue to search for what the infection is. I did test positive for chronic infection....we just need to FIND what it is.
So maybe i'm crazy for hoping for what seems like a miracle...but until today I had never heard of anyone being "healed" from fibromyalgia and I have only heard terrible struggles about people trying to get rid of Lyme...but today I met 2 people who both had a relative who had successfully overcome 1. Lyme and 2. fibromyalgia.
If Fibromyalgia isn't even a disease...it's a SYNDROME..... ( like I said a group of unexplainable symptoms) then if you can FIND the cause of those symptoms..why can't you heal it?
I want to believe so badly that God has a plan to heal me and use me to show His great power and miracles b/c I DO believe in miracles...and I need one...the thought of living with fibromyalgia the rest of my life and not being active like I used to and not chasing my Boston dreams feels like a death sentence......so that just WON'T be a possibility in my mind quite yet.
I was quite a mess this morning and feel bad for my friends who texted me during my complete breakdown.
I am pulling myself back together and moving on in HOPE.....
I actually have to thank my doctor for giving me hope today. Evertytime I think we are close to solving this puzzle, something else emerges but i'm REALLY hoping we are nearing the end of this road...although I know in reality there will probably be more.....
As I have gone on in my research the last 4 months..I have learned that ALOT of stuff is overlooked by traditional doctors.....
For anyone who has symptoms that they can't quite explain.....please check a few of these things out...they are only a TEENSY portion of what COULD be going on.. as I learn MORE
1. My last post gave some links to the MTHFR mutation....thats one place ot start. 5% (thats' 1 in 20 americans) have atleast one mutation of this gene. this is Worth looking into as it is connected to everything from ADD, Autism, Miscarriages, fibromyalgia, hashimotos....the list is over 300.....
2. LYME
3. HASHIMOTOS
4. HYPOTHYROIDISM (Go to this page and start reading under "NOTES")
5. for anyone ALREADY dealing with Fibromyalgia, hashimotos, MS or other cronic diseases..look into
"LOW DOSE NALTREXONE". It is a newer discovery....a drug that is traditionally used to treat people who are coming off heroine, alchohol or other drug addictions. It is used in small doses and taken right before bed. It helps to increase your own endorphins and has been successful in treating pain in these diseases as well as bring down anti-bodies in Hashimotos patients.
** I have been on it for 2wks with no negative side effects thus far. Generally it either works or it doesn't.
Here is one closed group on Facebook you can join to find out more : https://www.facebook.com/groups/108424385861883/
If you google it, you will also come up with lots of info.
Not sure where to start......these posts get harder and harder to write.......
Wow. I've been putting off this blog post...and now with more new test results, I guess it's time I sit down. I know I will want to read back on these some day so I need to do it.
I am nervous to post this and apologize if I sound at all negative in this post..I'm trying not to be but I've had a real string of bad luck and bad news the last 9mos.....I am actually surprised I have not fallen into a depression over all this. ( I thank my gluten free diet for that:)). I am just going to write what i am thinking and feeling RIGHT NOW and hope no one JUDGES me for it!
Well as per my last post, I got an MRI...it was Not Tarsal Coalition. It showed that I have unexplained Tenosynovitis in multiple tendons in my foot and ankle..(probably the same thing going on in my hip).
Dr. McClanahan had to tell me that he no longer knew how to help me and sent me on my way with a referral to more foot doctors:(.
I didn't go. I started to dig DEEPER.
If I have tenosynovitis and I've been resting for over 8mos then something at a deeper level is going on. Most people get tendinitis or tenosynovitis from over training....I have pretty much sat on my butt the last 9mos.
My husband started to question "Reactive Arthritis" which is caused by a chronic infection in the body somewhere....this would make more sense......
I did alot more research and got some tips from some other people suffering from my same diagnosis and symptoms.
I went to the doctor 2wks ago with 2 pages of notes, questions and tests that I wanted to run.
I asked him to check all my vitamin levels, TSH, T3, T4, Reverse T3, as well as test for Lyme disease, chronic infection and a gene called the MTHFR b/c someone had recommended I do that.
Thank goodness they did, b/c my results came back on thursday. I tested positive for infection or chronic infection, high Reverse T3, he is pretty sure I have a candida overgrowth and most shockinlgy I have a double mutation of the MTHFR gene, location C677T. This means I inherited this mutation from both my mother and father.
There are many mutations of this gene but the most common are 677 and 1298.
I have a double 677 mutation which is considered the most severe.
Here is what the leading expert Dr. Lynch has to say about it:
"I believe the MTHFR gene mutation is a highly significant public health problem that is completely ignored. Yet, millions are suffering from pulmonary embolisms, addictions, fibromyalgia, miscarriages, schizophrenia, severe depression, cancer and autism to name a few."
What started with "You have Hashimotos thyroiditis". 4 mos ago.....is now (and counting):
-Hashimotos
-Hypothryoid
-low progesterone
-tenosynovitis
-chronic leg pain
-Candida overgrowth
-chronic infection (he is testing me for Lyme and TB this week for starters)
-Mutated MTHFR gene. (terrified I am going to be diagnosed with fibromyalgia...although I suppose that is what my symptoms are right now anyway.. but I still don't want that label:)
I am so tired all of the time. On the OUTSIDE, I APPEAR seemingly healthy to people (which sorta makes me feel like an idiot) but inside my body is a toxic mess. I struggle to get dinner made, keep the house clean, stay up on work and just get out of bed each day to help get my kids to school:( this breaks my heart. no one sees the struggles that go on behind closed doors. I am SURE my husband is sick of hearing "i just can't honey, I'm so tired, my head hurts, my legs and back hurt, can you please do it?"....ugh just writing that makes me want to cry with frustration! i don't want to be a burden to ANYONE!
I had to teach lessons this morning to two new makeup artists I'm training and after 5hrs on my feet, I can hardly find the energy to do anything but sit here and type in my cozy chair. Somehow I need to go make dinner and catch up on work after a weekend away with my family.
THIS is not MY NORMAL:( the last few years I have just watched myself FIZZLE. it is so infuriating and discouraging.
I find myself questioning whether I can keep this up. Whether I can keep my business going?, my life going?.
I am still struggling to learn to say NO. I THINK in my head that I can keep doing everything that I always did, but then as the day goes on I see that I've again over scheduled myself and that I'm a weak shadow of what I used to be. It seems to glare me in the face as if to say "See, I told you you can't do everything you use to do"
I worry that If I ask for help people will laugh at me b/c everyone on the outside always tells me how I LOOK healthy. I don't want to be that person that NEEDS help so even when it's offered, I find myself saying "no i'm FINE.!!!" and being very adamant that I can do everything on my own.
When i'm laying in bed, I have urges to get up and run or exercise or go-go-go and clean my whole house and then I get up and try to go and realize i have no fuel in my tank. it is a let down every time.
I hold to the HOPE that SOMEDAY I will be able to be that vibrant girl again...and not just put on the facade for a few hours at a time and then feel exhausted and useless for the rest of the day.
I am still new to being an unhealthy person(that sounds wrong to say...but the fact is I am not healthy right now) and I really haven't figured out yet how to make this work in my life. I never in a million years that that THIS would be part of my life plan. and I KNOW it could be worse..OH WAY WAY worse...I know. I really do.... and I'm thankful that I'm stilll alive and walking and have my children and husband. I would rather be sick that see them be sick for sure!!
Part of me is afraid to run anymore tests and find out something worse. I try not to think about the increased risk for more chronic diseases, heart attack or stroke and I remind myself that KNOWLEDGE is POWER. If we can find out the source of the problems we have a much higher chance of succesfully treating it.
I can't ever get RID of Hashimotos, or FIX my mutated genes......but I can take this knowledge and try to find the best possible treatment there is. I hope we find solutions...that my thyroid starts functioning properly, that my antibodies come down to normal range, and that that pain in my legs subsides so i can run more than 2 miles without feeling like I ran a marathon.
I meet with my doctor tomorrow to discuss the next steps.......
I do know that My diet will have to become even more strict (don't mind me i'm NOT jumping for joy over that one)...my supplements have to change and probably the most intimdating part is my LIFESTYLE.
People with two mutated genes like me do not have the ability to break down TOXINS. This means we must try to live in the most toxin free environment as possible.
This includes,
water (for cooking, drinking and showering)
food,
makeup and hairsprays, (ummmm that IS my business, crap!)
toiletries,
soaps,
shampoos,
air freshners,
carpet dust,
regular dust,
cleaning supplies,
lotions,
laundry detergents....etc.
I could go on and on but my mind starts spinning. Not sure how or when I am going to start detoxing my home:/
How did I get here? and i know that HERE is not even that bad compared to some I have seen with my same diagonosis...I PRAY that does not mean things are going to get worse before they get better.
I pray daily for strength, for hope and most importantly for ANSWERS and SOLUTIONS.
I have faith that at some point down the road, i will read back on this and will be in a much better place and will hopefully have found solutions to many of these things!!!
And I still have hope and faith that someday I will get back and be able to run the Boston Marathon.....(that is my life goal or anyone who doesn't already know that:):))
YAY for MEB and SHALANE today!!!
MORE INFO:
The MTHFR gene has been scientifically linked to a number of disorders and symptoms that you can find here:
http://mthfr.net/mthfr-mutations-and-the-conditions-they-cause/2011/09/07/
I think it is worth looking into for Anyone who has any of these symptoms...if you found out you had a mutation you could increase your body function by avoiding Folic acid and supplementing with methylated B and folic acid.....a small thing could make a BIG difference.
Here is another great article I pulled some info from if you want to learn more:
http://www.stopthethyroidmadness.com/mthfr/
I am nervous to post this and apologize if I sound at all negative in this post..I'm trying not to be but I've had a real string of bad luck and bad news the last 9mos.....I am actually surprised I have not fallen into a depression over all this. ( I thank my gluten free diet for that:)). I am just going to write what i am thinking and feeling RIGHT NOW and hope no one JUDGES me for it!
Well as per my last post, I got an MRI...it was Not Tarsal Coalition. It showed that I have unexplained Tenosynovitis in multiple tendons in my foot and ankle..(probably the same thing going on in my hip).
Dr. McClanahan had to tell me that he no longer knew how to help me and sent me on my way with a referral to more foot doctors:(.
I didn't go. I started to dig DEEPER.
If I have tenosynovitis and I've been resting for over 8mos then something at a deeper level is going on. Most people get tendinitis or tenosynovitis from over training....I have pretty much sat on my butt the last 9mos.
My husband started to question "Reactive Arthritis" which is caused by a chronic infection in the body somewhere....this would make more sense......
I did alot more research and got some tips from some other people suffering from my same diagnosis and symptoms.
I went to the doctor 2wks ago with 2 pages of notes, questions and tests that I wanted to run.
I asked him to check all my vitamin levels, TSH, T3, T4, Reverse T3, as well as test for Lyme disease, chronic infection and a gene called the MTHFR b/c someone had recommended I do that.
Thank goodness they did, b/c my results came back on thursday. I tested positive for infection or chronic infection, high Reverse T3, he is pretty sure I have a candida overgrowth and most shockinlgy I have a double mutation of the MTHFR gene, location C677T. This means I inherited this mutation from both my mother and father.
There are many mutations of this gene but the most common are 677 and 1298.
I have a double 677 mutation which is considered the most severe.
So what IS the MTHFR gene?
- The MTHFR gene produces the MTHFR enzyme.
- The MTHFR enzyme works with the folate vitamins (B9, folic acid), breaking it down from 5,10-methylenetetrahydrofolate to 5-methyltetrahydrofolate
- 5-methyltetrahydrofolate helps convert the amino acid homocysteine down to another essential amino acid, methionine, which is used by your body to make proteins, utilize antioxidants, and to assist your liver to process fats. Methionine helps with depression and even inflammation. It also helps convert estradiol (E2) into estriol (E3)!
- Methionine is converted in your liver into SAM-e (s-adenosylmethionine), which is anti-inflammatory, supports your immune system, helps produce then breakdown of your brain chemicals serotonin, dopamine and melatonin, and is involved in the growth, repair and maintenance of your cells.
- i.e. a proper methylation pathway like the above is going to mean you will have a better chance in eliminating toxins and heavy metals, which can reduce your risk for cancer and other health issues, and put less stress on your adrenals.
AS you can see by what I underlined and bolded.....THIS is a big deal to me since I am dealing with chronic inflammation and pain and alot of fatigue!.....as well, Depression runs rampant in my family and I have suffered for years.
So what does a defective (mutated) MTHFR gene do to you?
- It produces a defective MTHFR enzyme of different varieties i.e. it functions less than optimally, such as performing at only 40% of its capacity, or 70% of its capacity. (In my case I am only perfomring at 20-30% at best) It can mean you won’t break down toxins or heavy metals well i.e. you could find yourself with high iron, or high copper, or high mercury….etc. High copper can also cause low iron.
- The defective enzyme doesn’t break down folate vitamins properly (of which folic acid is the precursor to), which can cause high homocysteine, which can increase your risk of coronary heart disease (arteriosclerotic vascular disease or venous thrombosis), and related heart and BP conditions, as well as increasing your risk for dementia.
- Homocysteine is poorly converted to glutathione, which is your body’s chief antioxidant and detoxifier. You are then more susceptible to stress and toxin buildup. (my stress fractures, my constant anxiety or feeling of being "stressed out" is all starting to make sense here.
- Homocysteine is poorly converted to methionine, and less methionine can raise your risk of arteriosclerosis, fatty liver degenerative disease, anemia (see Wiki), increased inflammation, increased free radical damage… and produce less SAM-e
- Less SAM-e can increase depression
- And more broadly, an MTHFR defect can increase your risk of a variety of cancers (including breast and prostate cancer), stroke, heart problems, congenital defects, depression, IBS (irritable bowel syndrome), miscarriages, migraines, chemical sensitivities and many conditions. This made me sob. My grandma died of Breast cancer at age 60. they SAY it skips a generation and effects 1 in 3 women. I am that generation and have 2 sisters. My chances are now increased and this terrifies me. Not being negative but it's a reality I have to be aware of now. My sisters need to be tested as they are also at risk b/c chances are they inherited at least one mutation also.
- You can find yourself with high folate or high B12. i.e. your body will have problems converting inactive forms of folate and B12 to the active forms. So the inactive folate or B12 will simply build up in your serum, also inhibiting the active forms. Most serum folate tests are actually measuring folic acid, which needed to be converted to methylfolate to be used metabolically.
- The journal Molecular Psychiatry states that “Schizophrenia-like syndromes, bipolar disorder, Parkinson’s disease, Alzheimer’s disease and vascular dementia have all been associated with one or more mutations of the MTHFR gene”. (2006;11, 352–360)
Here is what the leading expert Dr. Lynch has to say about it:
"I believe the MTHFR gene mutation is a highly significant public health problem that is completely ignored. Yet, millions are suffering from pulmonary embolisms, addictions, fibromyalgia, miscarriages, schizophrenia, severe depression, cancer and autism to name a few."
What started with "You have Hashimotos thyroiditis". 4 mos ago.....is now (and counting):
-Hashimotos
-Hypothryoid
-low progesterone
-tenosynovitis
-chronic leg pain
-Candida overgrowth
-chronic infection (he is testing me for Lyme and TB this week for starters)
-Mutated MTHFR gene. (terrified I am going to be diagnosed with fibromyalgia...although I suppose that is what my symptoms are right now anyway.. but I still don't want that label:)
I am so tired all of the time. On the OUTSIDE, I APPEAR seemingly healthy to people (which sorta makes me feel like an idiot) but inside my body is a toxic mess. I struggle to get dinner made, keep the house clean, stay up on work and just get out of bed each day to help get my kids to school:( this breaks my heart. no one sees the struggles that go on behind closed doors. I am SURE my husband is sick of hearing "i just can't honey, I'm so tired, my head hurts, my legs and back hurt, can you please do it?"....ugh just writing that makes me want to cry with frustration! i don't want to be a burden to ANYONE!
I had to teach lessons this morning to two new makeup artists I'm training and after 5hrs on my feet, I can hardly find the energy to do anything but sit here and type in my cozy chair. Somehow I need to go make dinner and catch up on work after a weekend away with my family.
THIS is not MY NORMAL:( the last few years I have just watched myself FIZZLE. it is so infuriating and discouraging.
I find myself questioning whether I can keep this up. Whether I can keep my business going?, my life going?.
I am still struggling to learn to say NO. I THINK in my head that I can keep doing everything that I always did, but then as the day goes on I see that I've again over scheduled myself and that I'm a weak shadow of what I used to be. It seems to glare me in the face as if to say "See, I told you you can't do everything you use to do"
I worry that If I ask for help people will laugh at me b/c everyone on the outside always tells me how I LOOK healthy. I don't want to be that person that NEEDS help so even when it's offered, I find myself saying "no i'm FINE.!!!" and being very adamant that I can do everything on my own.
When i'm laying in bed, I have urges to get up and run or exercise or go-go-go and clean my whole house and then I get up and try to go and realize i have no fuel in my tank. it is a let down every time.
I hold to the HOPE that SOMEDAY I will be able to be that vibrant girl again...and not just put on the facade for a few hours at a time and then feel exhausted and useless for the rest of the day.
I am still new to being an unhealthy person(that sounds wrong to say...but the fact is I am not healthy right now) and I really haven't figured out yet how to make this work in my life. I never in a million years that that THIS would be part of my life plan. and I KNOW it could be worse..OH WAY WAY worse...I know. I really do.... and I'm thankful that I'm stilll alive and walking and have my children and husband. I would rather be sick that see them be sick for sure!!
Part of me is afraid to run anymore tests and find out something worse. I try not to think about the increased risk for more chronic diseases, heart attack or stroke and I remind myself that KNOWLEDGE is POWER. If we can find out the source of the problems we have a much higher chance of succesfully treating it.
I can't ever get RID of Hashimotos, or FIX my mutated genes......but I can take this knowledge and try to find the best possible treatment there is. I hope we find solutions...that my thyroid starts functioning properly, that my antibodies come down to normal range, and that that pain in my legs subsides so i can run more than 2 miles without feeling like I ran a marathon.
I meet with my doctor tomorrow to discuss the next steps.......
I do know that My diet will have to become even more strict (don't mind me i'm NOT jumping for joy over that one)...my supplements have to change and probably the most intimdating part is my LIFESTYLE.
People with two mutated genes like me do not have the ability to break down TOXINS. This means we must try to live in the most toxin free environment as possible.
This includes,
water (for cooking, drinking and showering)
food,
makeup and hairsprays, (ummmm that IS my business, crap!)
toiletries,
soaps,
shampoos,
air freshners,
carpet dust,
regular dust,
cleaning supplies,
lotions,
laundry detergents....etc.
I could go on and on but my mind starts spinning. Not sure how or when I am going to start detoxing my home:/
How did I get here? and i know that HERE is not even that bad compared to some I have seen with my same diagonosis...I PRAY that does not mean things are going to get worse before they get better.
I pray daily for strength, for hope and most importantly for ANSWERS and SOLUTIONS.
I have faith that at some point down the road, i will read back on this and will be in a much better place and will hopefully have found solutions to many of these things!!!
And I still have hope and faith that someday I will get back and be able to run the Boston Marathon.....(that is my life goal or anyone who doesn't already know that:):))
YAY for MEB and SHALANE today!!!
MORE INFO:
The MTHFR gene has been scientifically linked to a number of disorders and symptoms that you can find here:
http://mthfr.net/mthfr-mutations-and-the-conditions-they-cause/2011/09/07/
I think it is worth looking into for Anyone who has any of these symptoms...if you found out you had a mutation you could increase your body function by avoiding Folic acid and supplementing with methylated B and folic acid.....a small thing could make a BIG difference.
Here is another great article I pulled some info from if you want to learn more:
http://www.stopthethyroidmadness.com/mthfr/
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