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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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What up people?! I am back and I have candida...bad!

Can you tell I am from the East Coast? Yo, wazzzz up? Actually, that's not really how I talk. I like to make fun of the Philly slang. "yous, ya's, ain't, and the awful sound effects that come out of the true Philly native (especially South Philadelphia, are just too funny.) Although, 2 sayings or words I have adapted lately that are universal it seems are; "Seriously?" And another one, "Really?" As in, you did not just say that.

I have been off somewhere, don't even know where really. I get a feeling of hopelessness with this illness and sort of retreat. I focus on my business too much for escapism, either that or I become obsessed with television. Not good television shows, but The Real Housewives of NYC or Orange County. The drama is just priceless. Now, I am addicted to the National Geographic Channel called WILD regarding animals and dangerous pets. I am loving the shows with snakes, because I hate them and yet find them fascinating.

I have had a few better days, here and there. I got to spend time with my family up in New Hampshire. That was awesome, even though there was a monsoon, the entire time we were there. We couldn't go outside. We were on this beautiful lake, but we were indoors. The fire was going and I think that made me sick too. I was with my mom for 6 days and really realized that she is old. It was so good for me to see that. She has a hard time climbing stairs and needs help and I bonded with her by taking care of her even though I was quite unwell. It's amazing what love can do, and adrenaline. Plus, the rest of my "interesting" family...where would we be without the drama. View attachment 2838

June has been a good month for business. I don't know how I am doing this business. I am exhausted and very aware, it won't last forever. I could never do this forever. I love it, but it's too much work and I like making jewelry, not the business aspect. I am really lucky I have some very wealthy customers who keep buying from me. They always get in touch with me. They are what keep this going.

NOW....on to what is going on health-wise. I am going to ask questions to and can someone answer and help me figure this out?

Since the food allergy shot, the monster shot, I have been able to eat again. Ice cream, pizza, wheat, quiche; things I have not had in years. IT's been great, but now...I have symptoms that are awful and I think due to yeast. I have had so much pain. I have had Fibro since 2002, but it's been through the roof since January. Through. The. Roof. Eating those foods, which contain sugar, unlike my bland diet before, has not been the best! I wake up everyday with pain in my back, neck, mid back, etc. I have been on Fentanyl patches and dilaudid, that is how bad the pain is.

The worst time is the morning. I wake up stiff. Absolutely stiff. I am thinking of going to a back doctor, but the pain changes constantly. It really started in January. I am not sure a back doctor is necessary or if this is just fibromyalgia and perimenopause, which causes inflammation and pain.

I have been on antibiotics 6 times since a year ago. This past time, I just have completely stopped going to the bathroom. Diflucan does nothing for me. I was on it for too long. It's like taking a placebo. My friend, who has lyme, recommended a very potent medicine called VFEND. Major nuclear bomb yeast med. It's $2,500 a month. I don't have prescription coverage, so I got in touch with the company and got it for free due to my low income level.

I went on it a week ago, and all of a sudden, the pain in my body was out of control. Like, I mean, out of control. Couldn't breathe kind of pain. Ever since the VFEND, I have been quite sick. My friend assured me it's the medicine, but I don't know. I mean, ever since the med, I am much sicker. I am nasty. I mean nasty. ME: "I am going to put you out in a boat and blow the boat up!" This is what I say to myself about my brother or a driver who drives too slow. I told my business coach this week that she sucks and is completely unprofessional, which is somewhere true, but my delivery was a BOMB. I apologized, but.....She wanted me to ask my clients for a $1,000 to help my business and I would give them a $1,000 in credit. Who does that? Asks their clients for money? Entirely unprofessional.

But, the biggest thing is the pain. The pain is worse since being on the med. That and the fact that I wake up in a panic. I can't get back to sleep. But the pain in the morning is worse than any other time of day and that is what keeps me from falling asleep. I am taking SOMA which does NOTHING. I am getting about 5 hours a night. I have, what feels like rib pain. Rib pain! Who has that? It's bizarre! I am exhausted. I bought a pass to the pool and have not been able to go. I am just not well enough. I have been indoors. The first couple of days, I had this awful headache. :headache: All encompassing, and the fatigue, I couldn't wait to go to bed, even though I couldn't sleep!

I cry everyday. I just feel sad. I think its fatigue. I don't know. But, due to the VFEND, I am going to the bathroom again. Oh, a weird symptom; I have more yeast vaginally. Weird. Since being on the med, I have more yeast. It's like oozing out. Sorry to be so descriptive. Also, I never have acne. I have 3 huge pimples on my face. They hurt too.

I know all about yeast, but I have not been on a protocol like this in awhile. I am kind of losing it. I need some sleep.

So, that is what is going on. My doctor says to take it every other day. I can't do it. It's making me too ill and I am not even at the dose you are supposed to be. It's a 200 mg pill and I take 50 mg. I need a few days off to see if I feel any relief. I have been crying a lot, like I said.

The summer is a slow time for business, thank GOD. I want off entirely. I need a break.

Does anyone else relate to this at all?

I strongly recommend this medicine. It's hard stuff, but it's serious stuff. No messing around. I get tired of herbals and the natural way with yeast. It takes longer, doesn't work as well for me, and I knew I needed some more potent meds. I am not doing it long term, as in for months. Some people do that, but if this is the way it is, I could never do it for months.

I hope everyone is having some happiness. I know how hard it is when you are unwell. I was doing so well last summer. That is another thing that is so hard to deal with, knowing I am not as good as last summer. :In bed:

I think I may go to the pool today and swim. I need to stretch or something. Ugghhh....my body hurts. It's so hard. I am so so tired. Before the yeast med, I was able to make plans. Not anymore! Out the window. Everyday, I am a different person with different symptoms. I think that's common with die off. Not sure anymore.

One good thing! I have lost weight. I went off of the antidepressant I was on; Remeron. It put 20 pounds on me. I am now down by like 8 pounds, don't look as bloated and I am able to fit into my older clothes. Plus, the medicine is making me not want to eat, so that helps too!

Thank you for the personal emails. I didn't realize that people missed me or wanted to know how I am. It's been 3 months since being on here. I didn't think virtual friends would really remember. I appreciate it immensely. I have made some friends who are some good people ;)


Spitfire glad to see you back.

The only suggestion I have is to do massive probiotics to counteract the antibiotics and get the good bacteria back in your gut. You take them at a different time of the day than the antibiotic, then continue taking them after you're done with the course of antibiotics. I took them for several years.
Hey Spit, my favorite blogger:).

It's dieoff--wow. Makes me wanna take it!
I'd just take a lot less. Get a pill crusher, and just take a smidge. If you do okay with the smidge, take two smidges.

They start people on a feather dusting of nystatin, which is hardly anything compared to this drug--because of dieoff.

Now you can't do that for months, as you'll build resistance, but certainly for a few weeks?

Let us know. Sounds like a great drug in some ways.
PS given your response, maybe fungal issues are a big cause of your illness. I know that's the case with me.
Jen, hey!! Hello!! Yes, yeast has always been a problem with me. When I treated the yeast 11 years ago, it cut my IC in half. Plus, my mind came back. But then I became resistant to Diflucan and nothing else worked. Nizoral didn't work well with me and Nystatin, I was allergic to. This one is heavy duty. I have a friend with Lyme who takes 200 mg of this stuff and seriously, that would kill me.

You are supposed to pulse this stuff; take it for 2 weeks and then stop for 2 weeks and take Caprylic acid and other things.

Fungus has always been a problem. I don't know what to do about it though because it's a chronic issue and the immune system is really the big problem.

Caledonia, as for probiotics, they don't really do anything for me. Especially when I am on antibiotics, which I am not now. It's always been meds that have help me to get rid of yeast. I take probiotics and expensive ones.
'sup dawg,

hey, nice to read your words again. you made it through the drama of being "locked in a cabin" with your family! you can beat this disease, piece of cake.

when i read that you can eat all those food items again, it was a horrified feeling for me. i was saying No, don't do it. until we are cured,and the causal agent of ME/CFS is killed, we can't eat that stuff. zero. because, well, you see what happens. it ain't pretty. right, easier said than done.

me too, about the probiotics: i can't get the right combo/ all i get is more bloating. ouch.

really, i think if we can get our gut under control, we might have a chance at winning the whole fight. inflammation is the big enemy; how to stop it ? if we get that answer for sure, a bunch of trouble goes away. i don't think antibiotics is a long term fix, but we do what is needed to survive. i get that. meanwhile, it's the kind of experience you describe, and it's hitting all of us too.

Something is wrong! is anybody listening? i bet you could write loads about that topic, because you are the spitfire.

wish i could offer a solution to this candida problem. sorry.

Yes, I know. Those foods aren't so good, but I have to tell you, I have enjoyed every bite! After 14 years of religiously not eating anything milk, wheat, soy, eggs, you name it....I was ready to EAT FOOD. Even when I was staying in the guidelines of eating totally healthy, I was so sick. So so sick. In 2009, my food allergies were so out of control that basically I was allergic to everything. I was mentally a mess. Food allergies affected me neurologically and I had a rash all over.

Now that I am on this medicine, I have no real appetite. That is good in a way. I am eating small meals and everything fresh.

I agree about the gut. That has been a major player in my problems. It has controlled so much.

I was on antibiotics this year for pneumonia and bronchitis. I had to take them.

Even when I was little, I had a white coating on my tongue. I have always had it.

Thank you!

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Misfit Toy
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