Walking again, No pain, and In Medical School!

[lemurlover]

Hi there,

So excited to say that I had IC for two terribly painful years and now I'm doing great. Was also told I had lupus, an autoimmune disease. I couldn't walk for 10 months and now I run again and bike up to 40 miles a day. Took a bike trip that was 250 miles last summer and wept because I am so grateful to be alive and healthy again. Having an experience like IC and not walking is a haunting experience. Until I did that bike trip I guess I kept expecting that pain was lurking for me, behind some corner. Now I think I've been around enough corners that I can relax! :)

So the scoop was that I went to about 15-20 doctors before I found someone who thought it made sense that food aggravated my condition...and I don't mean acidic foods. I mean gluten (wheat/rye/oats/barley) and sugar. It turned out that I had a mycosis-- a fungal infection that spread to my blood and took over and drove my immune system crazy. My particular problem was caused by an opportunistic pathogen, Candida albicans. It normally lives in the gut but can invade the blood and other body compartments if the gut becomes permeable, if there is enough sugar there to feed it, and if enough antibiotics are taken that it can fluorish in place of the normal flora. So I went on the Body Ecology Diet (search for it and the book by Donna Gates) and was pain-free within about 2-3 months. I couldn't eat black pepper for a couple years but now that is fine too. Check out that book if your history sounds like mine.

So now I'm in med school and loving it. People tell me that I seem so happy all the time, like nothing can bother me. I guess they are right. Every difficulty falls under the radar for me now that I have no pain. Nothing compares to pain and I am grateful now for even the "bad" days that have no effect on my body. I feel wonderful.

I enjoy the opportunity of being the president of Integrative Medicine at my school and educating my peers and professors about thinking outside the box and that healing is possible, and that we doctors don't always know what is wrong, especially if we get stuck inside the model.

Wishing you all the best in both coping and recovery,
MJ

[Silverfern]

Wow! what a fantastic positive post. I'm thrilled for you. Hopefully one day you'll be able to put your awful experience to good use when you become a fully fledged doctor. I'd say we need more people like you in the medical profession. All the very best for the future, both healthwise and careerwise.

Hugs

[lemurlover]

Thanks so much for your kind words!

I want to add that it was not just the diet that helped me recover. A few other things:
-I forgave everyone I could recall a grudge against.
-I meditated to enable me to deal with the situation and the grief I had for my health...and found that my pain decreased. If I meditated for 1.5-3 hours per day, my pain subsided. It would encroach upon me again throughout the day. This makes sense since I've learned in my Neuroscience course that there is a descending pain control pathway--that is, neurons that go down from the brain and affect pain intensity. I want to learn more about this, but emotion and the way we interpret our pain seems to have a big effect on how it feels to us, so we can learn a lot through minding our thoughts.
-I seriously considered drugs and would have taken IC drugs and immunosupressants as conventional medicine recommends, had I seen no improvement in a few months. Sometimes drugs are worth all the side effects and tradeoffs, say if the lupus had affected my kidneys.
-I began to pray again. After years of a rift with a sense of the divine in my life, I prayed to a spoon...yes a spoon. I found the idea of an intelligent god being upsetting so I asked the spoon to just exist and it did. I guess the healing in that was just that I reconnected with something outside of myself.
-I practiced this thought...every time I saw someone throughout the day, I thought "I love you." Try this out. Wonderful what it can do. Eventually you can even think it to the people who are difficult for you.
-I kept a journal, writing down what I ate, whom I spoke with, what I thought about, and the intensity of my pain on a scale of one to ten. Very interesting to see the patterns emerge.
-I took Nystatin and Diflucan for ~2 years to kill the yeast. I don't think the diet would have done it alone. As my immunology professor said, "Ha ha, that's tough! Trying to starve a yeast--they like the same food we do!"
-Chi Gong and acupuncture helped a ton. Very soothing. And this acupuncturist had people taking special trips to see him from all over the world and stacks of letters piling up saying (from doctors) "my patient has recovered fully...i can't find the tumor on ultrasound anymore", etc. etc.). And he's not just out for a buck. He wouldn't schedule me for a follow up visit when I asked. He said, "You all better. You no come back." And I pretty much was.
-I began reading a lot about spirituality and the body.

Hope this info helps someone! One of my colleagues in medical school just developed IC and I keep sending her what info I can. It can be tough but wow I have met some of the most shining souls ever in IC groups! :)

Rich blessings to yall, (you are in my prayers to the spoon)
MJ

[FrankieBee]

Hey MJ- thanks for sharing your story- I know that I have a problem with yeast and have given up bread for the last couple months and have felt a little better. This past weekend, I was on vacation with my family and I just wanted to eat like a normal person, so I ate bread and cake, etc. and I got really itchy and yeasty. Doctors don't seem to diagnose candida problems, though i just went to the ob/gyn and she noted that I had alot of yeast going on. Should I ask her for Nystatin or Diflucan- what kind of regimine were you on. My doctor actually did recommend an acupunturist, and said she had a friend who had IC and it worked for her (it was great going to a doctor who actually knows what IC is). And since the IC diet is so restricted and everything except meat and veggies has sugar in it - what did you subsist on?
Thanks for any advice you can give and that's awesome you are in med school !
FrankieBee

[lemurlover]

Hi there FrankieBee!

So I don't know all your history and everything so I can't give you any info that is perfectly suited to you...Hmmm.

Antifungal meds are pretty gnarly on the body. This is mostly owing to the similarity between human cells and fungal cells. It's hard to attack them without attacking our own cells with the same drugs. I would ask about those two drugs and for sure look into diet because I found that in my case it helped most to cut sugar (which made me cry the cravings were SO bad!). And yup, I ate meat and veggies and never ate till I was totally full. The idea being that you don't want extra food or very slow digestion. Scientifically I don't understand this but just went with it.

Oregano oil seems pretty great at killing what's in the GI tract. I've used it when I've gotten sick from bad sushi and didn't have insurance. But I bet for people with IC, that might burn really badly. If you do go for oregano oil, or antibiotics, or antifungals, it seems good to replace the bad bugs and yeast in the GI tract with "good flora."

The general rule from the Body Ecology Diet was: Every plate should have 20% protein, 80% veggies. The grains that were okay were: amaranth, quinoa, buckwheat. I couldn't have rice for about 6 months or my legs would sting up and down like I was being stung by bugs. The diet also said that protein + veggies was okay and 20% grain + 80% veggies was okay, but that protein and grain should not be consumed together. I'm not sure how crucial that is. I haven't seen a scientific reason for that, but I might just not know yet, and maybe someone else does.

Take care and lemme know if you have more questions. I am a beginner but will try to find people/resources advanced enough to be useful.

Night night,
MJ

[ChrissySunshine]

Hi there! I'm looking into this myself. I've gotten NO BETTER after following conventional IC treatment for 4-5 months. With all the other symptoms I have throughout my whole body, it really does make sense that I have possibly a yeast overgrowth (tho I've only had 2 yeast infections in my life), or some type of toxin invading my body. Since being dx'd with IC, I've been following the diet strictly; however, I haven't noticed many "trigger foods", and feel that EVERYTHING I eat makes my symptoms worse. Glad to hear you've had success with this!! :woohoo: Thanx for sharing!

[vm]

Your story sounds similar to my brother's. When he was younger he was out of school for at least a year due to near constant headaches and stomachaches. No one could figure out what was wrong - and told my mom it was all psychological.

She finally got him to a holistic center and they diagnosed him with a systemic yeast infection and allergies. He went on a VERY strict diet that eliminated ALL sugars (even in fruits and veggies) and was given antifungal meds and allergy shots. I don't remember how long he did all that - I think at least a year. He fully recovered and has been fine since.

[Kara Isabel]

Hi MJ

Thanks for posting this. It is indeed very intriquing....the fungal infection theory has really peaked my interest. I just placed an online order to the library the two books you recommend.

Long story short, when I was about 8 years old I came down with a terrible fungal infection. I was covered head to toe with ringworms and had to take anti-fungal agents orally and topically. Ever since then, I get 1-3 ringworms a year, and I've made no real connections as to what specifically causes the ringworm other than contact with cats (odd, I know)

What did you take to combat the Candida albicans? How did you get diagnosed?

I do suspect that I have a gluten allergy. I should start journaling as well! :D I took Accutane about 8 years ago and that seems to have started my bladder problems and I also developed food allergies. Basically, any food with a vitamin A content. I believe the high doses of accutane caused my body to think that vitamin A was the enemy. I'll break out in hives, wheezing, etc.

The bizarre thing is, my food allergies seem to have no rhyme or reason. A few years ago I could've eaten a blackberry, now.......a blackberry would send me to the ER!

I know my allergies are somewhat tied to bladder and fibromyalgia. I am just trying to put the pieces of the puzzle together! I've been through atleast 10 doctors trying to find answers, treatment and understand why this is happening.....and I've cut my eating down so much, I'm now in a situation where I need to GAIN weight. ugh...

Thanks for posting! And thanks for posting your other ideas.....it is all very interesting and I love to hear about success w/ IC!

hugs,
Kara I.

[lemurlover]

Hi there yall,

Thanks for writing back.

I'll write some more later. I have some references for you.

On acne, I had it pretty bad too. Especially on my chin and chest. I took a few rounds of tetracycline as a teenager, which didn't help at ALL! I think that, along with many doses (3-4/year) of antibiotics, allowed the Candida enough space and nutrients to flourish. I went of Accutane too but lost my ability to concentrate, burned through a couple of my mom's pots on the stove because I forgot them, had to drop my biochem course because I couldn't remember simple formulas, got afraid to go outside, had panic attacks, had violent nightmares every night, and still had a fair amount of acne.

My skin problems have virtually disappeared now, after a few years on this diet, after the drugs and all the other efforts.

Take care,
MJ

[Amy3Marie]

What a great story. I was just diagnosed and within days a ND told me that my son is allergic to almost everything. I decided first to do teh GF/ CF diet. I awant to be sure that he is allergic to these things. How did oyu find out defiantly what your allergies are. The ND did kinesiology...not completely trusting it. I am not certain about the blood profiles and pricks. What did you use? Also,what are you takingfor supplements, it seems as if so muchis excluded. Thank you sao much, I am aboutto enter into nursing school and felt like , I couldn't after receiving this diagnose. You are an inspiration. What does your meditation consist of? Take good care.
Amy

Hi there yall,

Thanks for writing back.

I'll write some more later. I have some references for you.

On acne, I had it pretty bad too. Especially on my chin and chest. I took a few rounds of tetracycline as a teenager, which didn't help at ALL! I think that, along with many doses (3-4/year) of antibiotics, allowed the Candida enough space and nutrients to flourish. I went of Accutane too but lost my ability to concentrate, burned through a couple of my mom's pots on the stove because I forgot them, had to drop my biochem course because I couldn't remember simple formulas, got afraid to go outside, had panic attacks, had violent nightmares every night, and still had a fair amount of acne.

My skin problems have virtually disappeared now, after a few years on this diet, after the drugs and all the other efforts.

Take care,
MJ

[lemurlover]

Hi there Amy!

Go to nursing school if you feel moved. Go part time if you have to. Take time if you have to...what else can we do with our lives except exactly what we want to do?! Your experience will likely give you great compassion for the people you take care of.

About your son, I don't know enough about kinesiology either. I love acupuncture and some of them are better than others (I know you saw an ND, but just for sake of comparison...). I saw an acu that did kinesiology on me and told me that I was allergic to all kinds of things but that gluten would be fine! That made me laugh really hard because I knew from doing an elimination diet that I couldn't have it and then a few days later I got my blood tests back and I was making antibodies to gluten. Maybe kinesiology can be applied in some valid way, and I don't have the training and haven't read any research on it. My own personal hunch, though I cannot back this up--it seems silly to me...validate it with other methods whenever possible.

I got immunoglobulin testing done for gluten intolerance. Ig's are antibodies. The issue I've heard with this testing is that a positive test means likely allergy/sensitivity, but that a negative test can mean no allergy OR that the immune system is not competent to mount a response. I don't know if maybe some people who test negative would be better off without gluten.

Great Smokies has a diagnostic lab in the Carolina's and they do some pretty unconventional testing. You could probably call them and find out costs and what kinds of tests they offer.

Testing can be expen$ive. I like elimination diets best. CHECK WITH A LICENSED HEALTH CARE PRACTITIONER ABOUT WHETHER THIS IS A GOOD IDEA IN YOUR PARTICULAR CASE. The way I did it:
-2-3 weeks on veggies and rice only. No corn, wheat, rye, oats, barley, meat, nuts, eggs, nightshade veggies.
-Add in one new food and wait 5-12 days and keep a journal of symptoms. It can take this long for a food to cause problems. Don't want to deprive yourself of the wrong thing.
-Avoid foods that cause flares in symptoms.
-If you suspect that flares are random, introduce the offending food again and check. It may be that food has nothing to do with it and that you should just eat a regular old diet.
-May confirm food reactions with testing, but not necessary.

For me it was bad when I ate:
Fruit, carbs, rice, gluten, meat and peanuts.
After one month, it was still bad when I ate:
Fruit, rice, high carb meal, gluten.
After six months, it was still bad when I ate:
Fruit, high carb, gluten.
Now, after four years since IC and "lupus" (really systemic candidiasis):
Only react if I eat simple sugars and gluten.

I think that over time the GI tract heals and becomes less permeable to large proteins that might elicit immune response. Surf the web and find info of a wide quality range on "leaky gut syndrome." I remember reading something about Glutamine (amino acid) ability to help heal the gut lining. But time and elimination can do much. I'll let you know if I think of supplements.

If it's candida, that puts out aldehydes as waste products, which leach minerals from the body. So you might try calcium and magnesium chelates (carbonate and oxide forms are cheap and poorly absorbed).

Gotta jam. Moving in 2 days! Yay! :)

Best luck,
MJ

[lemurlover]

Meditation - Soto Zen Buddhist tradition. Do search for Suzuki Roshi and also Thich Nhat Hanh and Pema Chodron. Can find centers on the web. Tibetan would probably also be good. Probably also Christian prayer, though for some that is thought-based, which might not help you let go as much.
Also Chi gong is excellent for freeing up trapped energy.

[ICNDonna]

I'm very glad you found you don't have interstitial cystitis. And glad you are doing well.

Donna

[lemurlover]

I did have IC, but I sure don't now. It's wonderful. :)

[marsi4]

I'm a little bit confused here. I,m just wondering did you ever have a diagnosis of ic with a hydro-distention? Did you have the common signs of ic visible in your badder ike gomerulations and a thickened bladder wall? What were your ic symptoms besides pain? How often did you take Nystantin and Diflucan in the two years that you used it? Was it daily or every other day, weekly? I have had a yeast problem throughout my life which may have contributed to ic and find my symptoms and pain improve somewhat when I'm on Diflucan but I,ve never been on it for longer than a month and a half at a time to see if it will treat my ic. I am going to try staying on anti-yeast meds for a longer term to see if my ic improves but I'm not countinbg on it after 34 years of ic. I'm open minded and willing to try just about anything before considering surgery. I'm really glad that you are feeling well again and are very active and athletic and have managed to recover from your struggles with ic if it's what you had. I wish you all the best in your medical career and your personal life. Your story does shed some light and hope on the rest of us.

Marsi4

[Amy3Marie]

Meditation - Soto Zen Buddhist tradition. Do search for Suzuki Roshi and also Thich Nhat Hanh and Pema Chodron. Can find centers on the web. Tibetan would probably also be good. Probably also Christian prayer, though for some that is thought-based, which might not help you let go as much.
Also Chi gong is excellent for freeing up trapped energy.


Wow! Thank you for all of that information. (hope your move went well.)I printed it off and keep re reading it. Did you put anything on your rice and veggies for those first few weeks? Were you eating it for breakfast ,lunch dinner? Amazing self control, you exhibit. I am very aware that I need meditation, and that I try to take myself out of the house eto do so, my house represents work.


Also, some of the foods on the IC diet in safe category have bad ingredients that we are supposed to avoid. Example is cottage cheese. Also, whipped cream says safe but it also has milk. I am not sure how to interpret it.


I thought that everyone with his condition ahead to avoid any food with any type of acid.(ascorbic etc....therefore supplements that have acids. Is this true for you??

Your Great inspiration!

[vm]

Thich Nhat Hanh's books are WONDERFUL. Definitely worth reading. :)