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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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progess report..feeling almost normal

Messages
49
Location
ct
I realize that when you start to climb out out of hell , you don't logg onto pr. But maybe my journey might help Someone else. Sick for approx 1 1/2 yrs with light headed, shakes, chills, extreme fatique. Bed ridden. Left my 300yr old farm and moved in with 86yr old mom. Felt mold was the trigger. Did the Dr route with no help. Started on cholestyrame for 4 mos, valtrex 4 mos, xanax still on, b12 injections, b12 sublinguals, integrated medicine energy powder, armour thyroid meds, d3 , allegra. When I was still feeling weak, lighted headed and exhausted, I forced myself to swim. I started very slowly...I noticed that after swimming, I would have more energy. It wasn't easy. I would get so weak and dizzy. But when summer ended I joined a gym. I workout lightly with machines and then swim for 20 minutes. I went from a 3 to an 8 in 6 mos. Am currently going thru allergy testing and so far am allergic to almost all the molds, dust mites, horses, grass, trees. And am doing neutralization therapy. I think I turned the corner with b12 injections every other day, swimming, b12 sublinguals, folate, then thyroid meds helped even more. I am currently seeing Dr lynch at Northampton wellness center in Northampton.ma. I hope this feeling lasts. Oh yea ...when I moved I left almost everything behind. Got rid of wall to wall carpeting, drapes, couches, pillows at my moms. After my depression of losing my life as I knew it..I know feel like I have a new beginning.
 

cb2

Senior Member
Messages
384
thanks you for sharing the good news.. i have some cholestyrame that has been sitting in the pantry occasionally i think about trying it .. what type of B12 injections are you taking and sublinguals too/ glad you are making progress and found swimming! sorry you had to leave your farm.. thanks for the hope!
i have been taking naturethroid and up to 2 grains but not getting much absorption my numbers as well as my energy are still very low.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Hi there, glad to hear how you got on.

I wonder if the difference between your story and some of thos on this forum is that you felt better after swimming. I've got terrible post exertional symptoms and swimming would put be back to bed with vastly increased weakness, sort throat, glands for a long time.

It's great news anyway and I hoped your new beginning lasts.
 

cb2

Senior Member
Messages
384
how often to you get the b12 injections? i have will try to remember to look up fredds b12 protocol.
does it make your lab b12 #'s come out high?
 
Messages
49
Location
ct
In the beginning I was down and out after I did anything. Swimming , for some reason helped with the light headedness. Didn't feel like I was going to passout when I was in the water. Getting out of the pool was another story. I would have to go home and lie down. Just seems like it got better, the more I did it.

The b12 injections..I did every day for 1st week, then every other day for 4 mos now. Never thought I could give myself a shot! But when it makes you feel better..its a no brainer. My b12 labs are high..but doesn't mean that your body is absorbing it all. You pee it out. It doesn't stay in your body very long.
 
Messages
13,774
Swimming , for some reason helped with the light headedness. Didn't feel like I was going to passout when I was in the water. Getting out of the pool was another story. I would have to go home and lie down. Just seems like it got better, the more I did it.

I've heard that swimming can be particularly helpful for POTS, as it's recumbent and the water-pressure on the body can be helpful (?). For a lot of people though, a big problem with swimming is the trouble of getting there and back.

It could be some completely different reason that you found it helpful though.

Whatever helped, it's good to know that you're feeling better. Good luck with continued improvement.