Have been very ill for 3 years since MRSA/ odd "episodes"

Thank you for allowing me to join this board. Two doctors have suggested
My CFS to me. I have not been diagnosed formally. I have since the bottom fell out, been diagnosed with celiac disease. I have been tested for lupus, ms, seizures, metabolic myopothies, Lyme, myasthenia gravis, and am now in testing for CVID. I know that the dr will come back as always telling me that everything is fine. When it clearly isn't. I came down with MRSA 3 yrs ago and haven't been the same since. I actually contracted another MRSA infection 6 mos later. 6 months after that the fatigue was noticeably severe. Worse than any pregnancy. Memory loss had become extremely concerning. I was having a fluttering sensation in my brain. I developed food intolerances to more than 40 different foods and then my body started to reject everything I ate. GI symptoms were severe, I was losing a lb a day. I couldn't walk without assistance, and when I did the dizziness was horrendous. I was dizzy sitting, standing and laying. I couldn't walk straight and I felt like I was sinking into the ground. I couldn't get off the couch for months and when I went anywhere it was in a wheelchair. I was so weak. I couldn't put words together or hold a coherent conversation. My joints were so painful I couldn't walk down the stairs without crying, you couldn't touch my legs bc my bones hurt so bad. I was diagnosed with celiac disease and a neuroendocrine tumor in my pancreas, which was benign and was removed. I went on vancomycin drip before the surgery bc I was afraid of the MRSA again. After the surgery I didseem to get a bit stronger, until I started to decline back to where I was. I would have these episodes of severe dizziness (though I was dizzy constantly)brain fluttering sensation, and I would be walking, I would start to slow to the point where I couldn't walk, it is like walking through mud. My face goes grey and blank, I need assistance to get into a chair. Sounds and people walking by me are over stimulating, I am too tired to talk. I just sit dazed for an hour or so. The I can feel it lift and pass, but it can leave me exhausted for days or weeks. My question is, do any of you have these "episodes"? The drs don't know what to do wi me. If it doesn't exist in their specialty it must be in my head. I am tired of trying to prove I'm not psychosomatic. I have never been happier in my life except for the fact that I feel like I'm dying. This summer I sat in a chair in my garden, wrapped in a blanket while others did my work, and I thought, I feel like the woman in the movies that is dying from cancer and they wheel her out to be with the family in the final days.
The other thing is that my ANA is 640.... The rhuemy said it meant nothing. It was a phenomenon. My Igm was high, but it does go down to normal too. They have it listed on my file that I have mgus (pre myeloma ).... I had no idea.
I feel like I am bothering these drs. I wait for months for a new specialist or testing, then it's another dead end and I start again. The whole time I get weaker and sicker.
I appreciate any words of wisdom

 

The way Cfs/me was diagnosed was test for everything. When the results came back normal, and everything else was eliminated, its Cfs.

They key I have found out is to find a doc who knows how to interpret tests which a "mainstream" doc thinks is fine. They don't understand how high or low normal is significant to us.

I got sick after I had a virus which I never recovered from so its not too much of a stretch to think the MRSA did something to you.

I suggest to hunt for a doc or see if one you are seeing is open minded enough to learn.

 

So sorry for all you are going through @Goimurph. Bone pain, food reactions, GI issues, elevated ANA, and MGUS can be related to Mastocytosis. It might be something to ask them to rule out. There are a bunch of links about Mast Cell Activation Disorders (Mastocytosis and MCAS) in my signature.

 

@Goimurph, Your symptoms could be linked to many things, so don't let people scare you into thinking you have cancer or some other deadly disease. If you notice, camas is obsessed with Mast Cell Disorders. I recently had someone suggest I had MS.

 

What you are describing here is common in me/cfs people. The dizziness, grey face and weakness sounds like some type of cerebal hypofusion, dysautonomia, POTS ( ?) followed by post exertional malaise (PEM).

Search the various threads on Phoenix rising under these titles. Have a look at the wiki article on http://en.wikipedia.org/wiki/Dysautonomia

A lot of my autonomic problems have cleared up after taking antibiotics for lyme/coinfections so i wouldn't rule out your Staph infection as a continuing problem. (What you can do about MRSA i have no idea). But it's possible to get these autonomic symptoms from many other causes as well. Most people with me/cfs are unable to locate any infection.

Your brain fog could tie in with many things but i would bet it is being affected by your gut problems. All i can suggest for this is the usual - Investigate leaky gut problems, try the GAPS diet, take the right probiotics, get a fecal analysis, take digestive enzymes, betaine hydrochloride.

The fluttering sensation in the brain is something i have had and it drove me nuts. It's probably HPA axis, dysautonomia related.
I used it as a bit of a barometer for gauging whether i was overdoing activity as it flared at these times.
Mine improved after taking Stablon, but only relatively.

That's the limit of my dodgy medical analysis. Good luck!

 

Hi, from what I've quoted above from your post... I think you could have dysautonomia of some kind.. as that can hit hard but then pass off like you said in an hour or so once you get off your feet and sit down (do you get better quicker if your legs are raised when seated?). Dysautonomia is common in ME/CFS and in mast cell disorders. You should have a tilt table test done to find out if you have a form of dysautonomia and if so what kind you have.

Your various symptoms including that bone pain (I used to get that severely) could be ME/CFS but you reallly need to get other stuff all ruled out properly first.

 

Thank you for the responses. I have had a tilt table test...ugh that was awful. My bp dropped on the table but stabilized quickly. So they were not concerned about my autonomic function.
Right now I am waiting in the immunologist who did some more testing. She was the one dr that was excited to see me, said her receptionist when she called with the appointment. LOL...No doctor is excited to see me! I hope someone figures something out soon. I can't keep doing this. Thank you for all your advice and input...I'll check out the Mast Cells again

 

No one should get a big drop on that (thou some drop is normal).. I wonder if those who did your test knew really what they were doing. Do you know what it dropped down too from? Ive come across a so called autonomic specialist who knew very little about other autonomic issues other then pure autonomic failure which I knew I didnt have.

 

Beaverfury, I've been researching Liposomal Vitamin C recently, and have come across references to it being used to treat MRSA. The following snippet was posted by an ND on "A Thread at The Vitamin C Foundation" (his entire post is at that particular thread). He mentions "bowel tolerance", but if you use liposomal C, you can completely avoid this kind of situation (because it goes into the blood and cells instead of through the GI tract). --- Best, Wayne

 

Brooks Bradley MRSA Protocol

 

thank you for all of your input.
Saw my primary and she is sending me back to oncology to take a look at my bone marrow, due to the bone and spine pain. However, she has already put in my file that through the process of elimination she is diagnosing me as CFS. Told me to get a massage, and acupuncture, and I need to consider antidepressants.
I get worse every day, and all I have is get a massage? I am trying to get in with another dr., but it may take a very long time to be seen. What in the world do I do in the mean time?