Would love some advice on a treatment plan...(VERY long)

[becky82]

Hi guys, this is my first time posting here & sorry in advance if it's very long and quite scattered. I'm actually going to paste what I posted at mthfr.net since I'm in so much pain today.

"Hi Dr. Ben! So glad to find your website, its really opened my eyes as to how destructive this mutation can be. I apologize in advance as I have bad brain fog today so my story might be confusing (and probably long), but wanted to see if you could provide any information for me.

My story:
Since around the age of 19, Ive had recurrent sinus infections and vertigo. Along with this came weird neurological symptom (tingling in extremities, burning sensations, feeling like the ground was moving underneath me), extreme anxiety, depression, etc. My symptoms were intermittent and at the time, I was too scared to go to the doctor (I have major health anxiety) because I was too afraid they would tell me I had MS or something seriously wrong with me.

Fast-forward to 2007. I was 24 years old and starting birth control for the first time. I immediately started having joint pain, muscle pain, strange fatigue, MORE neuro symptoms and it was all extremely scary. I was absolutely convinced I had a brain tumor or was dying. I honestly didnt even think it was related to the birth control. I was also weaning myself off of Xanax and thought it might be withdrawal from that. And it may have been a little of both. Anyway, this finally led me to get a multitude of blood tests for autoimmune diseases and such but everything came back fine. I stopped being sexually active at the end of the year and decided to go off the birth control. I noticed a huge difference in the way I felt. The pain had lessened along with other symptoms. Then again, I had also started taking Zoloft so I felt a lot better mentally as well.

I got married in early 2008 and tried to take birth control again. I immediately got sick, was bed bound, in lots of pain, tingling, numbness, etc. So scary. I decided I was done with trying the pill and since my husband was opposed to using condoms, we tried other things like natural family planning, spermicide, etc. Well, that didnt work out so well and I ended up getting pregnant with my son in September of 2008. My pregnancy went fairly well. I was on an expensive prescription prenatal vitamin (cant remember the name) for some reason, but not related to MTHFR as we didnt realize I had this mutation yet. Anyway, my son was born a week early in mid-May, 2009. I was in labor for hours and hours but could not push him out. I ended up having a c-section and surprisingly, a uterine hemorrhage as well. I lost so much blood, it was unbelievable. They didnt say much about it in the hospital, just gave me iron pills to help with my anemia and I went on my way

After my son was born, I began getting sicker and sicker. Joint pain everyday, extreme fatigue, nerve pain (burning, tingling, shooting pains in my joints and muscles), muscle cramps, brain fog, depression, anxiety, etc. It was completely debilitating. I found it all so overwhelming on top of having a rough marriage to begin with.

I started going to doctor after doctor to try & figure out what was wrong with me. Ive had every blood test I could think of (NO MRI or lumbar though) and everyone just said I was fine. The only thing they found was slightly elevated SED rate and CRP. This has been continuous over the years, too. Doctors have basically said its CFS and/or Fibromyalgia.

2011 was a bad year for me. My husband and I had been separated on and off (mostly due to my health but hes also emotionally abusive) and I have been having an extremely hard time keeping up with my toddler (who happens to have developmental delays). In August, I went to an integrative medical doctor at the Cleveland Clinic near my home. She tested me for things that other doctors didnt. One of them was for MTHFR. I received this result (lab results get posted on the Cleveland Clinic website):

The DNA sample contains one copy of the MTHFR C677T mutation (heterozygous mutation). This is associated with a substitution of alanine by valine at amino acid 223 in the 5,10-methylenetetrahydrofolate reductase enzyme, which results in a thermolabile form of the enzyme and slightly decreased activity levels. It is not associated with increased homocysteine levels. Heterozygosity for the C677T mutation has not been correlated with cardiovascular disease or venous thrombosis.

I called my doctor, confused. The nurse just told me to take Metanx and that its no big deal, a lot of people have it. Well, I research every lab result I get thats abnormal, and initially, I didnt find much of anything. I took my Metanx sporadically for a month, didnt notice anything, and because it was so expensive, didnt refill it.

(Im almost done, I swear! lol) Fast forward to January this year! I had lots of CFS/Fibro flares. I thought I was going to die again! Really awful pain like Id been hit by a truck. Unbelievable nerve pain. Vertigo. EXTREME fatigue. ALL of this on top of the fact that I am going through a divorce (YAY!). I got extremely depressed and started to look into MTHFR more to see if it was related to these symptoms. This time, I actually found some info. I didnt read too much as I have been so busy, but I started taking my Metanx again on Jan 16th. Ive improved A LOT in the fatigue/nerve pain area. Is this a coincidence or not? Should I be more concerned with my mutation or is it not that serious?

I know this has been very long, scattered, etc., and Ive left out so many important details and symptoms. At 29 years old, I have an extremely poor quality of life. The Metanx has given me some energy back and less pain, but depression, anxiety, brain fog and other things are still plaguing me, obviously. I know my diet is very poor, Im on lots of medications (antidepressants, supplements and others) and going through an extremely stressful time in my life. I want to know if theres hope for me and how concerned I need to be about my son (hes nearly 3 and is like a year behind in his speech). Im overwhelmed by all of the info out there but also think Im doomed to a life of misery. BTW my two brothers have substance abuse problems (one is really bad, on heroin, refuses to get help) and the other is extremely depressed, no motivation at all. We all have children and Im concerned. I want to help my family out but Im not sure if my specific mutation is one to be concerned about.

Thanks in advance if you read all of this!! I apologize if I made no sense "

You can read his reply here:Dr. Ben's Reply

I've been reading the methylation forum a bit but it's so over my head and I can't seem to concentrate much anyway. I've been taking Metanx since Jan 16th but have bronchitis and am back to severe pain & fatigue (bones hurt, burning muscles like lactic acid build up, neuropathy, muscle cramps, joint aches...). I can't live like this, you guys. I have to take care of my son and NOBODY understands me or really believes there's anything wrong. My family is like, "maybe if you exercised more, you wouldn't feel so crappy." YEAH, when I exercise, it'll wipe me out for a day or two! Goodness, I don't know what to do. I'm so so overwhelmed, depressed, feel dull and lifeless and just want to die at this point. Life is not worth living if it's like this.

Anyway, enough with my whining. Dr. Ben doesn't think my particular MTHFR mutation is that severe. Perhaps it's not, but Metanx definitely changed something and I felt remarkably different within 2-3 weeks of taking it. However, I've gotten sick & am back to severe pain and fatigue. I'm not sure what to think about that. Does anyone have any advice or tips? I'm so very depressed every day and extremely bitter that I can't live my life and give my son the mommy he needs. Anything at all would be helpful. Thank you in advance.

ETA - Had my vitB12 levels checked and they were normal. My D levels are currently on the low end of normal but I supplement with 5000iu of D3 everyday.

 

[xrunner]

Hi guys, this is my first time posting here & sorry in advance if it's very long and quite scattered. I'm actually going to paste what I posted at mthfr.net since I'm in so much pain today.



You can read his reply here:Dr. Ben's Reply

I've been reading the methylation forum a bit but it's so over my head and I can't seem to concentrate much anyway. I've been taking Metanx since Jan 16th but have bronchitis and am back to severe pain & fatigue (bones hurt, burning muscles like lactic acid build up, neuropathy, muscle cramps, joint aches...). I can't live like this, you guys. I have to take care of my son and NOBODY understands me or really believes there's anything wrong. My family is like, "maybe if you exercised more, you wouldn't feel so crappy." YEAH, when I exercise, it'll wipe me out for a day or two! Goodness, I don't know what to do. I'm so so overwhelmed, depressed, feel dull and lifeless and just want to die at this point. Life is not worth living if it's like this.

Anyway, enough with my whining. Dr. Ben doesn't think my particular MTHFR mutation is that severe. Perhaps it's not, but Metanx definitely changed something and I felt remarkably different within 2-3 weeks of taking it. However, I've gotten sick & am back to severe pain and fatigue. I'm not sure what to think about that. Does anyone have any advice or tips? I'm so very depressed every day and extremely bitter that I can't live my life and give my son the mommy he needs. Anything at all would be helpful. Thank you in advance.

ETA - Had my vitB12 levels checked and they were normal. My D levels are currently on the low end of normal but I supplement with 5000iu of D3 everyday.

There are others on this forum who know much more about the issues you raised. I think it would be better if you posted the query about Metanx and your B12 status and MTHFR in the Methylation section to get some more informed opinion than mine.
From what I know, reading various posts, I understand that
- blood tests of B12 are not reliable as they don't reveal if you have a functional deficiency (can't explain the reason)
- what's actually happening metabolically in you is more important than any mutation you might have (we all have some of those), which you can gauge from certain tests which others may advise.
- considering your history and the symptoms you described it may be helpful for you to see a Lyme literate doctor who can diagnose or rule out this infection as well as others which often come with it, that's my personal opinion.
- for your depression, there are a lot of remedies usually mentioned, however it may be worth giving Cat's Claw a try, as inflammation seems to be an issue for you. It can be surprisingly effective at lifting depression (it works very well for my mother) and it might help you with some of your other symptoms as well. If it works for you, you'll know it pretty soon.

All the best

 

[becky82]

Thank you so much for your reply, xrunner. I'll go ahead and post on the Methylation forums then!! I was sort of thinking the same thing about B12, actually. That I'm not processing it properly or something along those lines. I'm also interested in Lyme but wasn't sure where to start with all the stuff going on. I really appreciate your help though and will look into the Cat's Claw too!!

 

[*GG*]

I have nothing to contribute, sorry. Hopefully someone else will chime in or the other forum will help?

GG

 

[Jarod]

Hi there,

I'm not am expert, but can give you my 2 cents.

Everybody's situation is different so what works for one may not for the next. However, often times people end up with some kind of infection that makes us tired. Mine happens to be Lyme disease. Others have Chlamydia pneumonia, and some have mold and chemical sensitivities. Many different things that can get out of control and casue fatigue.

A good place to start is to find an integrative doc or naturopath, and get tested for viral and bacterial infections. They then try and treat those infections with various vitamins, herbs, antibiotics or whatever it takes to boost ones immune system and reduce the infection.

You might read around here and figure out what people are trying. Some people seem to get benefit with the methylation treatments which are relatively inexpensive and can be done over the counter. Richvank has a good protocol that is safe and effective.

http://forums.phoenixrising.me/show...fied-Methylation-Protocol-Revised-as-of-Today

The trick is to error on the side of caution and not do any damage.

I benefit some by eating well and trying to heal my stomach and liver.

Take care,
Jarod