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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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@renski Glad to hear you're seeing some improvements. Have they sustained since your last update?
Hmm odd reaction for a dentist visit..
Today has been a bit better, but the last few weeks I've had on and off chronic paranoia/anxiety/worrying, head felt like it was constantly spinning, unable to focus my eyes or attention on anything.
Got my latest bioscreen results which are a mess compared to when I had the same test in September last year, I'm going to see my doc on the 18th, to start antibiotics. Not sure how this stuff balances itself out but the restricted diet I was on has made things worse, that and the herbal antibiotics.
Hi Bridget,
The high levels of lactobacillus/strep and e-coli suggest lacic acidosis and LPS poisoning ..... both conditions have similar symptoms ......
Do you have diabetes in your family?
Cheers.
yeah .... Sorry .... I was looking at pdf files at the time ....Hi Elph, did you mean to reply to me or Streppy?
No diabetes in the family, also I have low e.coli..
Hi Noella,@renski I am doing about the same. I start feeling better until I fall off the strict diet and eat sugar/carbs. Dairy is the worst offender for me. I think elph really is onto something when he talked about adding bromelain. I can tell a difference when I take that with meals...My brain fog doesn't get nearly as bad after eating.
If I can just stop falling off the diet...
Sorry about the anxiety. Mine keeps me from leaving the house a lot of days. I'm always paranoid that people are talking about me/staring at me even though I know they're not. I always have a creepy feeling.
Hi renski,Hi Elph, did you mean to reply to me or Streppy?
No diabetes in the family, also I have low e.coli..
@renski I am doing about the same. I start feeling better until I fall off the strict diet and eat sugar/carbs. Dairy is the worst offender for me. I think elph really is onto something when he talked about adding bromelain. I can tell a difference when I take that with meals...My brain fog doesn't get nearly as bad after eating.
If I can just stop falling off the diet...
Sorry about the anxiety. Mine keeps me from leaving the house a lot of days. I'm always paranoid that people are talking about me/staring at me even though I know they're not. I always have a creepy feeling.
Hi renski,
have you tried drinking lactose free milk, or eating (3)dried figs?
I have a feeling that they could be a treatment for PEM .... if not, I know they will reduce fatigue and general tiredness.
I would be interested to see how they make you feel .....
Cheers.
Hi Noella,
Magnesium supplement and bicarb of soda may help .... After i took vancomycin my anxiety and panic attacks disappeared ....
Cheers.
Before I started with Xifaxan I cheated on my diet by eating French Fries. My hands didn't get red/burning feeling and no usual extra brain fog I usually get after eating something like that. There was no reaction so that was progress! The next day I cheated again, potato chips and some cookies. I did get some mild reactions but they went away when starting the xifaxan. Three weeks later I came across this article which states that you shouldn't go on a low-fodmap / low-carb diet to starve the bacteria as that will make it harder to kill them. After reading that, I tried eating some cheese. No effects. The next day I tried eating some cheese with bread. That's when the overwhelming urge to eat sweets/potato chips/fast food/cookies came back and led to a 4 day binge eating fest *insert curse words*
That's where I'm now, one month after starting xifaxan with more brain fog than before thanks to my binge eating. And afraid I have undone the previouw months by a couple days of bad diet.
Of the 31 ME patients I have 23andMe data for and ethnically matched controls, only 3 are AG for rs1800629 and none are AA. Of the controls, 12 are AG and 1 is AA.Anyone here have their genes tested by 23andme? If so, what do you have for TNF-308 rs1800629?
Not really. There might be one or two symptoms which are similar, but that's true of most diseases.Isn't that what we have, just as adults?
It's hypothesized to be an autoimmune disorder, but there's no evidence of that yet. At any rate, it's probably a good idea to find a doctor familiar with PANDAS, and see if they think it fits your symptoms. They would probably have some ideas for treatment as well.This involves an autoimmune process that infects the brain and I have a dang gene that is causing it.