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Hello ladies,
I have not been diagnosed but suspect I have CFS and fibromyalgia. I know that these are pretty common with IC. I used to be in the 'bladder pain only' camp but have now added the above two to my list of ailments. Does anyone have these too? Did they progress for you? Is there a way to nip them i the bud, before they progress? Most importantly, how did you/do you get rid of them? Any tips greatly appreciated. Is exercise good, for example, or will that cause problems for someone with CFS?
Fibro
I have fibromyalgia. So far it hasn't really gotten any worse, probably thanks to Matia. I think that a high percentage of people with IC have fibro.
Yes, I have CFS. I believe it
Yes, I have CFS. I believe it is related to adrenal fatigue, which I think a lot of Matia's patients also have. I think this is probably one of the last things that will heal, because all the die off in the beginning can worsen the adrenal fatigue/CFS/FIBRO (I am glad Matia goes slow, because that is all my adrenals can handle). But, evetually the hormones will balance out, and the gut will heal, and those symptoms too will pass.
Mel - What are your symptoms of CFS?
How do you know you've got it? Is it common with IC? Were you diagnosed formally or did you diagnose yourself?
MelBel - how do you know you have it?
I know it sounds weird. Have you been formally diagnosed? What are your symptoms?
I know it sounds strange but how do you know -
that you have CFS? What are the symptoms?
MelBel - how do you know you've got it?
I know that sounds weird but what are your symptoms of CFS? I am trying to establish if I have it too.
Autoimmunity
I'm brand new here and have only found out about Dr.M and this site tonight. Really hopeful though. I'll be calling in the morning to set up an appointment.
In answer to your question though, I have IC, vulvadynia and a host of other autoimmune stuff. CFS is just one of the diagnoses I've been given over the past few years... but also Hashimoto's thyroiditis, Lyme disease, and possibly lupus.
For the last 2 years I've been following the antibiotic protocol for rheumatic disease as explained by the Roadback Foundation and my rheumatologist is a progressive guy who believes that autoimmunity is actually a systemic response to subacute chronic infection. He suspects mycoplasma as a culprit but also looks at many other bacteria, and has mentioned to me the role of yeast, fungus and parasites in this kind of stuff.
From what I've seen on this site tonight, Dr.M seems to believe the same thing... but happily, to treat it without the use of long-term antibiotics which I've now been on for over a year. I was beginning to wonder if I would be on doxycycline every day for the rest of my life. Yeast has become a problem for me.
Thank you all for being here with your kindness and words of optimism. I've got a lot of hope that maybe at last I've found a path that will help my body to find its balance again. As I'm sure you'll understand (especially since I'm in the midst of an intense vulvadynia flare reaction to starting SF722) this can be a rough road to travel.
How did you test lyme disease?
Hi Hopefulmama!
I have also not seen Matia yet. Waiting to get an appointment. I live in Sweden.
Sorry for all your symptoms and problems. I too have a whole list of symtoms.
I wonder how you were tested for lyme disease?! Or what made you suspect you had lyme? Was is a normal blood test or the more advanced blood test that you had to do?
I have just taken the basic blood test at my local doctor, and it was negative! I wonder though if I should spend money on more advanced blood tests?
All the best to you!
Welcome
Hello you two,
I am so happy, for all of us, that we found our way here. It can drive a person crazy to be so ill and have so many tests come back negative. You don't know wether to be relived or cry. I truly don't believe that you'll ever regret being seen by Dr. B.
Take Care,