My b12 experience and looking for help and guidance

[BFG]

Can someone help me?
Here is my story:
Hello I am 26 years old male, 6'2" and average 134lbs. It all started a month ago when I
decided to go on a calorie restricted diet. Before this I had been on diet with a lot of
veggies, carbs, and dairy, fish, and very little meat. On this calorie resricted diet I was
eating around 800 calories/day for about one week and during that week I began experiencing
bouts of extreme dizziness and sudden body fatigue that would subside almost immediatly
after eating. I blamed it on low blood sugar and by this time I was at 118 lbs. I woke up
on the day of 6/22/2012 and I felt really dizzy and felt like all the energy had been
sucked out of my body. I went to the ER and they told me that it was dehydration, but even
after the 2 bags of IV fluid I still felt the same. I returned home and for 2 weeks ate a
very healthy diet, including a lot of meat, got a lot of sun and gained my weight back to
136 lbs.
I was feeling like my old self again, and even started to do light weight liting, but a
week later slowly I began having new symptoms and the dizziness and fatigue returned. Here
are my symptoms:
Dizziness (can barely walk and feel extremely dizzy standing on one foot or looking at
computer screen)
tingling in limbs
sharp pains in head (which neurologist tells me it is occipitol neuralgia)
sharp pains in chest(might be chostochondritis) and palpitations
trensiet facial parasthesia
very weak arms and legs and loss of sensation in them
sharp pains in neck
extreme fatigue no matter how much sleep i get
tinnitus and ear fullness
blurry vision and eyes tend to come out of focus
seeing starbursts and incresed amount of eye floaters
fizzing feeling in head- which brings on sudden dizziness
anxiety
head feels really heavy at times
left foot feels really warm all of a sudden
loss of sense of temperature and sense of where sounds are coming from
muscle twiches all over body
braing fog
migraine
tingling in tongue
no appetite/ feeling of fluttering(dont think it's my heart though) in chest after eating
or drinking, which makes me gag/cough
some of these symtoms I can remember having as far back as 4 years ago, such as a past
occurance of transiet facial parasthesia, chest pains/palpitations, sudden hearing loss,
sudden dizziness, and frequent muscle twitches which all went away and didn't last long
enough to warrant a check up.
Up till now I have seen three doctors, a neurologist, and an ENT. THey don't know what is
going on with me because I keep getting negative test results here are my results:
Glucose fasting: 105 (60-99)
Cosrtisol: 24.7 (8-25)
CBC: WBC: 7.5(3.5-12.5)
RBC count: 5.72 (4.10-5.70)
Hgb: 17.0 (13.0-17.0)
Hematocrit: 49.7 (39,0-51.0)
MCV: 87 (80-100)
RDW,RBC: 12.4 (12.0-16.5)
Platelets count: 173 (140-400)
Ferritin: 132 (22-365 ng/mL)
TSH: 1.34 (0.10-5.50 uIU/mL)
Free T4: 1.6 (0.8-1.7 ng/dL)
Total T3: 97 (50-170 ng/dL)
Thyroglobulin 5.5 (0-55 ng/mL)
Thyroglobulin AB: <20 (<20 IU/mL)
Folic Acid serum: 16.3 (3-17 ng/mL)
Intrinsic Facotr AB: Negative
Parietal cell AB: <20
TT IgG: 0.17 (<0.90)
TT igA: 0.25 (<0.90)
serum MMA: <0.2 (0-0.3 umol/L)
HEaring test: normal
*I have an identical twin brother, who is experiecing similar symptoms but to a lesser
degree. He took a couple b12 sublinguals for 2 days, but still recieved serum b12, hcy, and
uMMA to check for b12 deficiency from his doctor:
b12: 799 (>200)
homocysteine: 12.1 (<12.0)
uMMA: 1.1 (0.3-1.9 mmol/mol creat)
Since his uMMA is fine I guess this means he is not b12 def?

I could not get a serum b12, hcy, or urinary MMA for the diagnosis of b12 deficiency
because I had already started taking cyanocobalmin sublingual 1200 mcg (which wasnt helping
much), before I knew about the tests. Then I read "COuld it be B12" and found this site.
Now I was almost certain that I had some sort of b12 problem. I bought all sorts of methyl
b12 from a supermakert but they did not help much. I went to my doctor but he only gave me
one shot of 1000mcg of cyano and that was all he could do without a diagnosis. Right after
the shot my face and foot went almost completely numb and I felt really awful for the next
couple of days. I asked him about hydroxo and methylcobalamin injections, but he said they
weren't even in the formulary of kaiser hospital. Still suffering, I read Freddd's protocol
and purchased the following:
Jarrows 5000 mcg methylb12
Nutrigold Krill oil
Jarrow Methyl Folate (not sure if this is the right folate form)
B-RIght (contains folic acid and methyl folate)
I coudn't wait for the supplements to arrive so my brother went out and purchased Jarrow
1000mcg from a local store.
Right after I took one I felt my vision clear up and my dizziness subsided slightly, but
symptoms would come back 2-3 hrs. I recieved my supplements and after 2 days I felt most of
my syptoms subside and I could at least walk for 5 min at a time. It is now my 5th day and
my symptoms don't seem to be fully eliminated.
Leftover symptoms after above supplements for 5 days:
Really fatigued/exhaasuted/ no energy
dizziness, but not as severe as before
ear fullness/ reduced hearing
pressure in chest after eating
brain fog and out of it feeling
chest pain
anxiety
left foot warm feeling
Eliminated symptoms after 5 days of above supplements:
tingling in limbs
most of muscle twitches
migraine
tingling in tongue

After 8 hours of the first Jarrow 5000 mcg b12 I start to feel fullness in my ears and the
fatigue and dizziness return, so I now take 2 a day every 8 hrs- is this too much??

I'm trying to drink a lot of coconut water to keep my potassium levels up.
Should I try adding in more of Freddd's recommended cofactors, if so which ones? I want to
try the adenosylcobalamin, but could not find any without the sorbitol(this gives me really
bad migraines)
Does anyone know any doctors around the Sacramento, CA area that prescribes methylcobalmin
injections??
Sorry for the long post, but I feel alone and FURIOUS since every doctor I talk to could
care less about helping me and brushing me off. Can someone please help me I feel
debilitated and desperate.
Thank You.

 

[Idie]

Dear BFG,

As I read each symptom you listed, I thought to myself, YES, I had the majority of symptoms you listed. Welcome to the club no one wants to belong to.....the B-12 deficiency Club. I felt dreadful for almost a year before I figured it out (not my doctor) and once I did, it took nearly 3 months on Fredd's protocol before I started to feel better and 6 months before the dizziness went totally away. As I looked back, I had symptoms for 10 years before my body just ceased to cope and I had what B-12 deficiency sufferers call a B-12 crash. My advice would be to get on top of this early so that you don't suffer the same fate. Consistency of supplementation is what worked for me. Remember you do not get better in just a few days, it takes time. The testing for B-12 deficiency is not reliable---I learned that the hard way. My daughter also suffers from B-12 deficiency. It can and often does run in families. My grandfather, then me, then my daughter. It is also NOT an older person's disease as many doctors suggest. My daughter is 29. Read the whole thread called The Hidden Story---it will help you understand a great deal about the issue.

Idie

 

[BFG]

Thank you for your reply Idie. I feel a bit better knowing others are out there that have gotten better. I will keep positive that I will get better in time and to just be patient.
Can you tell me which supplements you used and how much you took?
Did you ever try b12 injections?

 

[Sallysblooms]

I would find a doctor that understands supplements. Magnesium and others could help some of the symptoms. Do you get enough meat?

 

[Crux]

Hi BFG;

I'm glad that the B12 and B complex are helping you and your brother. Sometimes test results don't firmly reveal a deficiency, so a trial of supplements can be useful. I think it's good that you are being methodical about this.

I noticed that your glucose is up, and that your cortisol, although not elevated, is in the highest normal range. Although there can certainly be many reasons for this, I'll bring up one possibility. Zinc deficiency.

With zinc deficiency, there can be glucose intolerance, insulin resistance, and increased cortisol.

I've been finding that trying to balance supplement quantities can be just as difficult as deciding which ones to take. If I take too much B12 (cobalt ), it seems to offset zinc. If I take too much zinc, it offsets copper.

So, I suggest that when trying to balance supplements, especially trace metals, it's a good idea to find a proper dosage. ( I'm still struggling with this.)

 

[BFG]

Sallysblooms,
Thanks for your reply. I don't really know how to find a doctor who specializes in supplements. Would that be a Nutritionist? I am eating quite a bit of red meat, maybe about once or twice a day.

uni,
Thanks for your insight.I have always been skinny my whole life. Even before this happened I was around 137 and no matter how much I eat it is very very hard for me to put on muscle/fat (ectomorph body type). I am currently eating around 1800-2200, but someitmes it is hard to eat so much because of my recent indigestion/bloating. I don't know what it is I feel very hungry but my stomach feels full and after a couple bites it fills me up. I have to force myself to eat to maintain my weight.

Crux,
Thanks for replying.I had never thought about a zinc deficiency. What form of zinc would you recommend? I have Now foods opti-L-Zinc is that one good? (Zinc (from L-OptiZinc® Monomethionine) 30 mg 200%
Copper (as Amino Acid Chelate) 300 mcg 15%) bought it awhile ago to see if it would help my acne, but made me breakout even worse.

 

[Sallysblooms]

Nutritionists can be good also. I was talking about MD's. Integrative Medical Doctors.

 

[Crux]

Hi BFG;

When I restarted zinc about 5 mnths. ago, I also had increased skin outbreaks, and I'm a 55.5 YO female. Some of it was probably detox.

I haven't tried the brand of zinc you have, but I do have an opti-zinc type with a ratio of 15 mg zinc to 1mg copper. (Jarrow's ). I wonder if your type has too little copper to balance with the zinc. I've read that males need less copper than females, and that they generally need more zinc than females. But, it could be that only 15 mgs zinc and 1mg of copper may be needed. Copper, in the right amounts, can help skin quality,and fatigue.

I found that B12 and zinc improved my appetite. The B vitamins and zinc helped most of my digestive/bloating problems, but probiotics and naturally fermented foods were included in my diet. It really takes alot of substances to digest food.

 

[BFG]

So its been about 3 months since the onset of my symptoms and about 2 whole months taking the following supplements:

Jarrow 5mg 4x/day (20mg) Have recently started to cut down, felt symptoms get worse the more i take
Jarrow Methylfolate 400 mg 1x/day
Jarrow B Right 1x/day
Jarrow TMG 500mg 1x/day
Healthy Origins ALA 100mg 1x/day
Krill oil ( stopped )
Drinking a lot of coconut water for potassium
Eating a healthy diet-- cut out gluten

I was doing really well with these supplemenets. I could walk around and take short walks. Go to the grocery store. My symptoms were drastically reduced and my skin started clearing up. But about 2 weeks ago I felt the sudden weakness overcome my body again out of nowhere and I was still taking the same supplements when this occured. Now I experience very bad fatigue all day. I can barely walk around sometimes. My limbs feel so heavy and i have numbness in my face. My calfs are so tight and they twitch frequently especially after a hot shower. Now my hands are becoming fatigued as well where It feels very hard to even wash my hands and lift my arms and legs. Paliptations and shortness of breath have returned. Even my acne and keratosis pilaris came back. I recently lost my health insurance due to turning 26 under my mothers health plan and cannot afford health insurance. I might order the 23andme genetic testing, metametrix stool exam, and maybe methylation panel to see if i can find a cause to my symptoms.

I thought my symptoms could be due to a magnesium def. so I purchased concentrace liquid minerals and misread the directions and took 20 drops in one glass. 10 sec later my body felt incredible again with incredible energy and my whole body felt light I coudn't even stop smiling. Literally 10 sec before I was feeling week, fatigued, tired, chest pain, dizzy and it all went away, but then 10 min later i had very bad diahhrea and my symptoms came rusing back. Still thinking my syptoms due to a mag def. i ordered mag oil and flakes after applying my tightness in my clafs increased and felt my ftigue worsen. This has happened consistantly everytime i try to apply mag oil or soak feet in the flakes.

Now the more i research the more things I find that could be causing my symptoms. I'm currently thinking it could be related to my GI. I noticed that my stool has been always pile of very loose scruffy, flaky stools at the bottom of the bowl with undigested brown rice/black rice( my staple) tomato skins and vegetable matter- it looks like i didn't even digest anything. I always thought this was normal, but i showed my brother and he said it doesn't look digested. I have been eating brownrice/black, soymilk/soybeans, oatmeal for about 4 years now and eliminated white rice because it broke me out. So it could be high phytic acid content in my food causing malabsoption/maldigestion leading to vitamin/mineral def, dysbiosis, SIBO, hypochlorhydria, leaky gut, IBS. It is also very hard for me to maintain weight, even if I go below a 2,200 calories for even one day i could lose 3 lbs.

other possible causes:
Lyme
Parisite/candida infection
Toxic Mold (have some mold in kitchen and bathroom and under bed smells of mildew)
gluten intolerance
some type of infection( recently had dacrocystitis(might be chronic since I sometimes wake up with eye irritation and puss)
Mast cell disorder (symptoms sound like me)


Can someone recommend any tests i can order, without a doctors order?
ANyone experiencing anything similar to my situation?

Thanks.

 

[Marlène]

@ BFG

have you ever been tested for porphyria?
http://www.pathguy.com/lectures/porphyri.htm

Basically, you get sick or burn easily getting in the sun, your liver cannot digest medication nor supplements properly, you are not able to convert sulphur properly, you react badly to alcohol, tomatoes, coffee, MSG, you are more prone to MCS, your skin sometimes has acne like lesions, your belly hurts often, you react badly to anesthesia, you may not dehydrate, diet or go in hypo in order not to trigger an attack, ...

You feel better when you eat sugar or carbohydrates.

 

[BFG]

Marlene, I've never heard of porphyria before. Although I don't have the skin manifestations. This could be a possible diagnosis, although it mimics a lot of other conditions.

Today I went to the ER becuase I was feeling extrememly weak (could barely wash my hands) and was having SOB. I thought maybe i was hypokalemic from all the b12 and folate. The docs checked electrrolytes and my levels were fine:
Potass:4.1
mag:2.9(might have misheard him)
calcium: 9.1
The doctor said I could possibly have Hypokalemic Periodic Paralysis, and that is exactly how i feel(but not to this severity):

I have been drinking about 1000 mL of coconut water and eating a lot of bannanas. THis has seemed to relieve some of my symptoms esp my weakness and my symptoms come back if I eat a high sodium meal.

Is this really Hypokalemic Periodic Paralysis or low intracelluar potassium from too much MethylB12 and Folate???
Anyone have these symptoms from too much b12 and folate?

 

[hollie9]

BFG, I am having similar symptoms. I've had CFS for 20 years but managed with pacing. All of a sudden much more major fatigue that feels different hit me along with dizziness/vertigo (can't drive on a freeway), choking at night, and other similar symptoms have been going on about 3 months bad. Although I can't lose weight on 800 calories a day, I have unexplained weight gain....so thought my problem was thyroid.

I thought it was undiagnosed low thyroid and went to a natureopath here in Santa Cruz since I can't get in to an endo for a month. While there I got a shot of the methylcobalamin and could not believe what a difference it made. I used to give myself large doses of cyanocobalamin but they did nothing compared to this methyl B12 shot. Of course it's temporary and I still have to find out the main problem....thyroid, she thinks maybe an EBV elevation, gave me Adrenal Support which is actually glandular. I can't live like this and was glad to see your post.

I moved here from Sacramento 2 years ago and all the decent CFS docs there have retired (Ermann, Ryll). Try a natureopath doc for a methylB-12 shot, they cost $22 here and I hope to get a script and do it myself.

Also, my family has genetic porphyria which has killed or paralyzed 4 aunts and uncles, 3 of my cousins. Supposedly I don't have it in my genes. I would doubt any of this has to do with Porphyria.

I would love to hear if you find out something.

 

[BFG]

Hi Hollie. Thanks for posting. Since my last post, which was about five months ago, I stopped researching about my condition/symptoms/ possible diagnosis and started to make little changes in my daily living. To find a diagnosis and possible cause is great, but for me it just makes my anxiety shoot through the roof and exacerbates all of my symptoms. I am learning yoga(slowly) and reducing my physical and especially my mental stress as much as I can.

I was feeling really good through October through January. A lot of my nerve symptoms were gone. The only symptoms that I still experienced were fatigue when I pushed myself too hard. I also noticed that there is a correlation to the quality of my sleep and how I'm going to feel that day. If I wake up a lot of times during the night and have this feeling where I feel like my mind is wide awake, but my body can barely move I will feel more symptoms during that day.

After new Years is when I started feeling all of my old symptoms come back. I noticed it when I just recieved my 23andme results and went back into research mode and went back to looking for a cause of my illness. I saw another neurologist and he did an EMG and nerve conduction test and told be "you have damage to the ends of your nerves, but it looks like it's healing." And I asked him what it could be caused by and he said, "virus or bacteria it is like a guillan barre type thing" and that was it. So now I'm back to another general practioner who is recently ran a serum Heavy metal and lyme titer which were negative. I still don;t think that lyme titer was enough to rule of lymes though and I am currently waiting my results for:
ANA
Rheumatoid fator
CRP
ESR
EBV ab

Regarding Porphyria, I have not pursued that yet. I tried the urine in the sun thing but my urine never changed color. But currently my understading of my symptoms and what seems to make the most sense is pointing more toward CFS/ME and a chronic viral infection than porphyria.

Right now I'm housebound, but able to walk outside for a little bit. I feel like Im always teetering back and fourth towards slight recovery and then back to illness.

I'm currently trying to save up enough money to purchase ppo insurance (currently covered by the county) so I can see some doctors who actually know something about CFS/ME and related conditions and try out some treatments. I've been looking for doctors and am thinking about seeing Dr. Mora and Dr. Kwiker in Sacramento and possibly seeing Dr. Chia in LA later down the road.

I know it is hard dealing with this everyday, but I find the more I try and challenege it or feel sad for myself it never helps. But what does help me is to listen to my body and go with the flow. Oh and also reading a lot of Krishnamurti and Tolle.