Look what I found!

Someone else who healed their IC by following a diet that heals the gut (WAPF- Weston A. Price diet).

Read more here...they're just a bunch of threads, but watch for what JaneS says. I'm going to try to get her to do a guest post for me. :)

http://www.mothering.com/community/t/967319/i-broke-my-bladder-inducing-interstitial-cystitis

I know you're out there...

I know you're out there...Even though you guys and gals aren't commenting on my blog! :) I see that I get hundreds of visitors here every day. Maybe I'm helping someone!


Hi! I got an email from a fellow IC-er and I thought my response to her may be helpful to you all. I know I post so many posts in the IC network, so I think the following information will be a great 'summary' of what I'm doing to heal my IC...(drum roll please...)


----------

I'm a strong supporter of the Weston A. Price diet. I did not just 'believe' in them haphazardly. It was through all my research that I later found them, studied them, and saw that they were in agreement with all I learned.

If you go to the Weston A. Price foundation's website, you will learn and read so much. Barring food intolerances, I eat according to their principles. So for example, I'm not able to tolerate any grains as of now, but I hope to be able to do so in the future. The autoimmune protocol diet that I've been doing over the past couple of years is a close cousin to the Weston A price diet; I just stuck with the AIP Paleo plan because it automatically excluded all of the foods I was intolerant to. The AIP diet had go-to recipes for me and it made my life MUCH EASIER as I navigated food intolerances. As I healed my gut (how? read on), I've recently added 2 very exciting ingredients to my diet: eggs and raw unpasteruized milk.

So here is my plan in a nutshell to heal my gut right now:

1. Eat lots of gut healing foods. This includes fresh bone broth. The fatty and gelatinous qualities of the broth will help to heal and seal the leaky gut. My family and I eat a nice soup each week made from this broth, and I drink a large cup of it in the morning. My secret ingredient to making my broth taste divine is to add 1/2 a cup of raisins to the broth as I'm simmering my bones/meat. It makes it taste superb. I promise. I'd invite you all over to try it if I could. You'd be a believer! :)

I have learned to can my own broth so I don't take up freezer space. It's nice to not have to thaw yet another ingredient! :) I found the big 1/2 gallon jars at Walmart (left)...they save a lot of space too!

2. Protect the gut flora, at all costs. I've spent countless hours learning about alternatives to antibiotics. Most recently, I have arrived at the incredible, and very reputable medicine of homeopathy. I've faced 2 bladder infections and one very serious strep throat infection ever since I 'swore off' antibiotics, and I've been able to treat each fully and completely with homeopathy. I have the before labs and after labs to prove it. I am currently taking an online course with a lady named Joette Calabrese called "the Drug Free Family". This has been instrumental in helping me devise a real plan to avoid antibiotics. I feel like I'm really learning the discernment needed in order to know when I can treat me/my family via homeopathy and when I will need to actually seek medical intervention and possibly antibiotics (in life-saving, heroic circumstances). I no longer make fear-based decisions to rush to the doctor and get stuffed with prescriptions. I know have the tools I need to make meticulous choices regarding my health and my family's health. I am in charge, and I don't just run to the doctors office for every little ailment. But, as I've said before, I'm grateful for these amazing doctors and their antibiotics should I need them in life-saving, heroic circumstances.

I now own 2 kits of 100 remedies each. The 1st kit is in 30 potency and the other kit is in 200 potency. I feel very prepared to make decisions and deal with my family's health. Discernment is key, and I'm growing more confident each day!

3. Rebuild the gut flor via probiotics, digestive enzymens (which aid in breaking down the food, thus giving the probiotics a break), eating pre-biotics (in particular unheated potato starch), fermented veggies (I don't tolerate beneficial yeast very well, which is in fermented veggies/kombucha/kiefer etc, so I'm going slow on this), and raw milk and raw milk yogurt.

I think my fermented veggies look pretty in their jars, just like these ones.

4. Maintaining my REAL food anti-inflammatory diet which includes lots of organic vegetables, grain-free meals made from scratch, soaking and dehydrating nuts/seeds, homemade yogurt, and eating minimal sugar (even honey!)

This is an actual picture of last night's dinner: home made 'tortillas' made from eggs and coconut flour (they are light, fluffy, and a rave with my family), shredded pasture-raised organic chicken, raw cheddar cheese (we get ours from an Amish farmer), homemade organic guacamole, organic cilantro, organic onions, plain homemade raw milk yogurt as a sour cream, and extra garlic for good immune boosting properties. Dessert was fresh organic orange wedges. It was a modern farmer's dinner alright!

5. Homoepathy for my CHRONIC illness (not just acute). So yes, I'm doing homeopathy for my acute problems (strep throat/bladder infections and the like), but I'm also doing it for my long-term IC issue and body itching (dermographia) autoimmune problem. I'm working with my Joette Calabrese on this, and I'm following the Banerji Homepathic Protocols (which my homeopath knows). For me, diet and gut-healing alone was simply not enough. It wasn't until I added homeopathy that I was able to actually start reintroducing foods. It has significantly sped up my healing. If you look through my previous posts, you can find 1-hour video that discusses what homeopathy is and how I'm using for both acute and chronic issues.

This is a picture of my homeopath Joette Calabrese (middle) with Dr. Prasanta Banerji (Left). She has done fellowships in India with Dr. Banerji learning his amazing form of homeopathy that has been clinically proven to cure even Cancer. She does Skype appointments.

So this above information is my current plan. Most of this I have learned by reading the information from Weston A. Price Foundation (WAPF).

I was also asked to share some good books to read: 
I don't think they actually have one single 'book' you can read. Much of my above plan was pieced together myself. I just kept finding others (WAPF people/Paleo people/ GAPS diet people) who each had very similar plans to address their chronic autoimmune issues. But a few books do come to mind:

The Weston A Price foundation has a great recipe book that has lots of ethnic foods which promotes great guts and healthy digestion. Intertwined is in this book is a lot of WAPF information.

Nourishing Traditions by Sally Fallon

Another great book is GAPS diet by Natasha Campbell McBride. Technically, I am on the GAPS diet because I eat soaked nuts, milk (raw), and eggs but follow a grain-free diet. The GAPS diet is a  cousin to the Weston A Price foundation, and it is actually the diet that WAPF promotes for those who are suffering from Autoimmune diseases.

The GAPS diet by Natasha Campbell-McBride

Finally, another great book is the THE PALEO APPROACH by Sara Ballantyne. Sara Ballentyne is not necessarily a WAPF person, but much of the paleo principles are Weston A Price principles. They believe in drinking bone broth to heal and seal the gut, they believe in a grain-free diet, and they believe in good gut flora. So People who are Paleo or Auti Immune Paleo (AIP Paleo) pretty much another cousin to Weston A Price.  I think the main difference is that people who are Paleo choose to never again eat grains ever again in their life, ever. However, someone like me (a diehard WAPF) believes that good, organic, soaked and sprouted grains when prepared properly are good for you and that you should eat them in great moderation. I cannot eat these right now due to the gut troubles, but I'm not going to give up until I can eat a more diverse diet (and as a result have reversed my IC!). I hope to become a full WAPF.

The Paleo Approach by Sarah Ballantyne

I just wanted to give you a quick 'recap' in case you weren't able to read the dozens and dozens of messages I've posted in the forum! Ha. I just really want this info to get out to anyone who is interested in healing IC via gut healing. I hope I'm not the only one who experiences massive success from my plan. I think that I found the root of my IC problem...and I dare say this is the same for many others.

PLEASE PLEASE stick around on my forum, and post comments to anything interesting you experience/find.

Xoxo,

Paola
Paola

The most excellent update...

UPDATE: 

I'm doing incredibly well. Lately my plan has been to:
1) Heal my gut by protecting my gut flora and 
2) To NEVER take antibiotics again unless I'm on my deathbed. 

Let me address #1 first: This entire blog is dedicated to sharing how I have arrived at this goal and conclusion. I would recommend reading each of my posts, one by one, starting from the beginning. It will help you understand all the crap I've tried to get to this conclusion.

Now for #2: I know that sounds crazy, to not take antibiotics, but ever since my last experience in taking antibiotics (where I developed a 2nd autoimmune condition called dermographia), I knew that these drugs were ruining my life and that my body does not agree with it (I dare say NOBODY'S body agrees with it!).

So of course, within a week of me making this very difficult decision --to not take antibiotics--I of course caught strep throat from one of my kids.

I understand that strep throat is very serious and can develop into even more serious conditions. I went to the doctor and once my throat swab confirmed strep, I went ahead and purchased the penicillin to treat it. BUT I DIDN'T TAKE IT. Instead, I worked with my homeopath and began taking the Prasanta Banerji Protocol for strep throat. This protocol was:

1. Hepar sylph 200 every 3 hours during the acute, and as it improves you back of the remedy.
2. because I had a lot of saliva with my strep (as in it was gagging me!), I also took Merc Cyan. 200 WITH the hepar sulph. 

If you google Prasanta Banerji Protocols, you will learn more about this very specific and incredible form of homeopathy that even traditional medicine is recognizing and using to treat CANCER. You can also see my video here where I teach a 1-hour course on homeopathy. 

Dealing with strep ended up being a transformative experience for me, and while it was a slow struggle, I was able to heal my strep completely without antibiotics. If you ever get a serious infection like this, be sure you're working with a smart homeopath. And if you don't have the correct Banerji Protocol remedies on hand, don't be stupid like me and order them online via regular mail...RUSH ORDER THEM AND OVERNIGHT THEM, no matter the cost!  *Lesson Learned.*

Then I developed a bladder infection. The strep throat bacteria somehow got to my bladder (no surprise there! Compromised bladder = easy access to strep! It was strep A, not group b strep). Well, once again, I turned to my Banerji Protocols for homeopathy, and I healed the bladder.

I have labs confirming the befores-and-afters of each infection. Strep before. Nothing after.  Maybe I should post pics of these labs. I'll look for them.

Homeopathy is incredible. 

My IC is getting permanently better each day and I have homeopathy to thank.

I hope my message is helping someone.

OH! And I forgot to say the most important thing! Remember how I was on a crazy limited diet? Any deviation from the PALEO AUTOIMMUNE PROTOCOL diet would cause massive bladder pain? Well, great great great great great news!

I have introduced eggs, and raw unpasteruized milk into my diet for 2 months now, and I'm have 0, absolutely 0 bladder symptoms, or digestive issues. I know, some of you are going to freak out about me drinking unpasteruized milk, but please, do your research and learn for yourself why I have chosen to drink it. In my experience, it has been incredibly safe and beneficial. A good place to start is to google http://chriskresser.com/raw-milk-reality.  Basically, when I drink raw milk, I'm drinking a probiotic-rich drink that helps recapture your gut flora with beneficial bacteria.

Please be aware that I'm not making any recommendations to your life...just sharing my experience. If you do try this or any of my other ideas, please come back and share with us!

Many people who are 'lactose intolerant' have switched to raw milk and suddenly can tolerate lactose again! Hmmm....maybe it has something to do with the fact that raw milk is rich in digestive enzymes and probiotics designed to digest lactose?

One other great article you can listen to and read is on NPR. Google http://www.npr.org/2013/05/03/180824408/michael-pollan-you-are-what-you-cook
...it helps you not fear good good bacteria!

1-Hour Course on Homeopathy for Acutes & Chronics

This course will discuss how homeopathy has helped me with my autoimmune diseases (1) Interstitial Cystitis and (2) Dermographia (my new one).

It is a full-length course...but I hope it'll be worth every second.

If this video raises more questions, please post comments and I will gladly create new posts and/or videos that address the questions.

http://www.youtube.com/watch?v=fzhLevvpP6w

Blessings,
Paola

Guest Post

Hi!

I made a guest post at the Pelvic Pain- Our Stories blog. Hope you enjoy it.

http://pelvicpainourstories.weebly.com/women-with-pelvic-pain.html

-Paola

A bit of bad news, then it got worse...then it got better.

Hi IC pals,

I've got some bad news to share, but I want to let you know that I'm at an incredibly good place right now. So stick with me. Good news to follow...

If you remember, when I last posted, I was pregnant. Unfortunately at the end of October, I had a miscarriage due to an umbilical cord accident. I thought it was related to the subchorionic hemmorage I had (it was a rather large one), but alas it was not meant to be. The umbilical cord was wrapped once around my baby's neck, and she passed in gestation.

It was obviously a pretty traumatic experience for me. The actual birth (as I had to deliver at the hospital since I was starting my 5th month of pregnancy and I opted out of the D&C) was sad but peaceful. It was a very sacred experience for me and my husband to share.

Well, when it was all over, I realized it was not indeed all over.

A week after the miscarriage, I got a bonafied bladder infection (confirmed with urine culture). I then went on a week of the antibiotic macro bid and I thought all would be fine. I know antibiotics are bad, especially for women with IC, but I didn't know what else to do. I did try to 'kick' the infection via herbs but it didn't work. I tried some homeopathic stuff (cantharis), and it helped, but then I didn't know how to use the homeopathic remedies and I messed it up.

A few days after the macro bid I developed a severe, painful, burning itch all over my body. I later learned that I now have dermographia--thanks to the antibiotics, and that this is technically an autoimmune disease. It's closely related to histamine issues, which we all know, IC is also a histamine issue.

I spent the month of December at the Mayo Clinic in AZ hoping to find answers. The itching and burning was extremely painful and horrific. I could barely move my body without it itching. If I actually scratched, I would develop hive-like bumps on the site. Any sort of pressure...sitting on the toilet, getting up from the bed, and putting on socks, would cause the burning itch. I stopped washing my hair and I even stopped brushing it expect for perhaps once a week because a gentle comb through would cause the searing burning itch. Even the cold air outside would make me have a total body fit of itching. It was insanity. I don't mean to be too graphic, but when I would have a bowel movement and clean up afterwards: the mere act of cleaning up would cause an insane amount of itching in the buttocks. I wouldn't wish this experience on my worst enemy.

It was terrible. I was convinced I was developing mastocytosis, a severe and life threatening histamine intolerance/mast cell problem that can manifest with this total body itching + IC. Many people with mastocytosis have IC and they itch all over their bodies. I think this debilitating itching, the miscarriage, and watching my health further unravel was a little too much for me to handle, and I started having panic attacks at night. I would wake up completely drenched in sweat *as in I could take off my shirt, wring it, and see droplets of water fall out.

Of course, to make matters worse, I ended up having an 'incomplete  miscarriage'...this means some tissue was left behind from the birth, so I had to have a D&C after all. Ugh.

So, back to the Mayo Clinic. I spent a month of appointments there, and the end verdict was: I'm incredibly healthy. They ran a BATTERY of tests on me, and they all came back normal and healthy. My hormone levels checked out great. They checked me for all kinds of intestinal issues like Small Intestinal Bacterial Overgrowth, Low Acidity in the stomach, fructose malabsorbtion, and more. They also checked my blood levels, thyroid, adrenals, cholesterol, and they checked me for mastocytosis. I even had a CT scan (no I didn't drink the contrast dye!)  They WANTED to do a lot of other tests on me, like the 24 hour oxalate urine test, but if you follow me and my blog, I had already done those  :).  I did pat myself on the back for being almost as smart as the Mayo doctors and for having many of the tests they WANTED to do for me done ahead of time. :) I was literally asked by 6 different mayo doctors "If I was a Scientist" or a "Professor of Science" because "I knew so much and had done so much already." But unfortunately patting myself on the back would cause me to itch, so I didn't even do that.

By the time my trip to the mayo ended, I was not only in 'incredible health' as far as lab results go, but they said they didn't know how to help me.

One thing they told me was that they were glad I hadn't done any of the invasive bladder procedures, like botox in the bladder, pudendal nerve block, and others. They said that the sickest IC patients that they see have done all of these, and that they recommend not 'getting in line' for such invasive procedures especially when they're new. They told me that less invasive is best. They were also impressed that I had managed my IC so well until now. This is definitely just the opinion of a few of the Mayo doctors I saw, but I felt very validated. I'm so glad I have turned so many of these procedures down. This is just my own story. I don't want anyone to feel bad if they have tried some of these more invasive procedures. You have your journey too. We're all trying our best.

Anyhow, my instincts and gut told me that my IC is a systemic problem, not a bladder problem, and this was conformed to me by my Mayo doctors with 100% certainty. They didn't even bother having me see a urologist. They sent me to all the other doctors to help me identify a system 'root of the problem'.

Please remember, this is just MY IC journey. I'm not trying to be prescriptive here. Just sharing my story.

How am I now?

Well, you can't blame me from completely walking away from the medical community at this point. I'm done. I will not see another traditional doctor unless an extreme circumstance warrants it. To me, the Mayo clinic was my last-ditch attempt with the medical community. They have consistently made me worse via drugs and antibiotics. I'm so mad about it. I don't mind being 'under the care' of my awesome urologist, but quite frankly, I think I have more to contribute to my health than he does. So while I am 'under the care' of him...I don't really feel like he's doing much for me as I 'm not taking any medications from him.

Back to my terrible story: I had itched for about 6 weeks with absolutely no relief or improvement in the slightest. I spent 99.9% of these weeks in bed. The .1% involved me using the bathroom and taking epsom salt baths. It had been 2 weeks after they cleared my miscarriage via D&C, and there was no relief. I had hoped it would improve when the 'foreign tissue' was out...I wondered if my body was reacting to the uncleared miscarriage...as if I was 'allergic' to the tissue.

Well, I started trying all kinds of non-traditional and traditional things: I did a juice fast for 1.5 weeks. No improvement. I took antihistamines...1 dose would help me for 2 days and then the itching would come back full force and worse than before!

I then had an incredible voice come into my head: It told me that the itching was a gift. It was a symptom that would push me to find true healing. Don't suppress it. Look for an answer.

At this point, I was so desperate that I was willing to see a freaking witch doctor. All I wanted to do was mourn the loss of my baby girl and I could move forward. The itching had halted my mourning process.

Well, that's when I found homeopathy. Websites like quack watch are not supportive at all to homeopathy. They have their opinion, and that's fine by me.  Homeopathy in general is not popular with people in the USA. However, homeopathy is booming in Germany, England, and various 1st world countries. To me, it's not a fad. It's real and it works for people.  I began working with a homeopathist named Joette Calabrese. She is a student of the Prasanta Banerji Protocols (an advanced form of homeopathy). In a nutshell: the Banerji Protocols are pretty incredible at treating and curing cancer. They've gotten so much attention that the MD Anderson Cancer Center has invited the Banerji's to join them in sharing how homeopathy can heal cancer. Evidence of this claim can be found here and here and here. Of COURSE we haven't heard about this in America. We don't like homeopathy here, so we won't talk about it, not even when people like me have hit dead ends with traditional medicine. 

My results in using homeopathy: My dear IC friends, the results have been amazing. My itching is so much better. I can wear jeans again, move about with minimal discomfort, I can brush my hair, absent-mindedly scratch my face, and there is minimal response and minimal discomfort. And also, the amazing thing is, that my IC is better too! SO MUCH BETTER! I feel like it's getting better each week. 

There are 2 caveats: 

1) the homeopathic remedy has been slow. It's like watching your children grow: from one day to the next, you can't tell a difference, but from perhaps one week to the next you can!

2) The Banerji Protocol is NOT classical homeopathy. It is a very specific form of homeopathy, and it is pretty incredible. I will explain more about how it works in a subsequent post here on this blog. If you know anything about classical homeopathy, the Banerji Protocls may sound like blasphemy to you. I am open to anything at this point, and to me, the Banerji Protocols work.

3) For now, let me share with you what my protocol is for IC + Itching:

a) 5 pillules of Staphysagria 200C once at noon on Thursdays and once at noon on Sundays.

b) 5 pillules of Meddorinum once at Noon and once at bedtime, every day (so 2 doses a day).

c) 2 tablets of Natrum Sulph 6x, once at Noon and once at bedtime, every day (so 2 doses a day).

A-C above are for the histamine/IC issues. I need to take each of these at least 15 moinutes apart from each other  I need to do this for one month and report back to my homeopath. I've been on it for 2 months and I'm significantly improved. It has helped my IC and it has also helped my itching. 

Just recently I was given an additional remedy for the itching:

d) 5 pillules of Antimonium Crudum once at noon and once at bedtime, every day (so 2 doses a day)

If I had IC and severe food intolerances, and if I came to this blog post and read these remedies, do you think I would order them online and start taking them? You betcha! Do you think I would make an appointment with the above homeopath, Joette Calabrese, (she does Skype appointments)? YES!

I've tried so much, and so little has worked. This is working. I hope to find complete recovery through homeopathy.

Best wishes to you in your IC journey, dear gals.

And I will post more about the Banerji protocols soon.

Xoxo,
Paola

P.S. in light of how well homeopathy has been working for me, I stopped Total Body Modification. I think it's amazing for some, but not the quickest path to healing for me.

Total Body Modification...STARTED

One thing that annoys me when reading IC patient stories is that so few of us follow up on how we're doing and how things are going in the long-term. I love the little group of gals I have going on the IC Network because it seems that we all stay connected and keep updating each other! Thank you! I can't tell you how helpful this has been to me in my journey of HEALING.

So, in the spirit of updates, I wanted to let you know how I'm doing this week.

Last week, I started doing Total Body Modification treatments. It's another one of those crazy quacky voo-doo natural healing things that I 100% believe in. One hundred-percent. Now, whether or not TBM is right for my system and my body is another issue that I will find out over time! Obviously.  After my NAET-like treatments worked for only 2 weeks, I was at first devastated but later inspired because I realized that there IS something out there that can resolve my food intolerances, and thus the main source for what ails my version of IC. Remember, my thesis is that IC is a systemic issue that is simply manifested in the bladder, and that if I find what is ailing me in my body, I will resolve my IC. Most recently, after I felt so amazing after my NAET-like treatments, I realized that Food intolerances were my main issue with IC! 

Ok, so back to TBM...I was interested in it because I read that many people reversed food intolerances by doing TBM. I went ahead and found a chiropractor (who is actually well known in the area as a very reputable doctor...I called around and asked my own trusted Chiro about her) who does TBM. All last week, she began her treatment. Basically 'treatment' involves muscle testing, and then adjusting or applying different but specific types of pressure or modification to specific points in the body. These modifications, I have found, have been minimally invasive. I am pregnant, and I wouldn't do anything that would be very 'rough' or possibly jarring to my body. So don't picture me on some chiropractic table being folded into a pretzel with Olga jumping on my back with her elbows. It's very gentle and relaxing. Sometimes I'm sitting up, other times I'm laying down.  Anyhow, the treatments have been very relaxing, and I usually went home feeling emotionally well.

Well, after each of my first 3 treatments, I would go home and get really busy with the other 3 kids, and completely forget about my TBM treatment earlier that day. But, within a few hours I would be HIT HARD with fatigue. I would feel SO SO TIRED! For example, it would be 4 pm, but it felt like midnight. I felt SO tired that I even compared it to how I normally feel after I give birth. Like very very tired. Thank heavens my mom is here helping out, and I could go lay down and rest. It was only at my 3rd TBM treatment that I picked up on the pattern: My extreme fatigue was only happening after my TBM treatments. To me, rest and sleeping is the body's way of healing itself, so to me, I felt reassured that these TBM treatments were indeed doing SOMETHING in the form of healing. But, I was still pretty skeptical as to whether or not I would/will reverse my food intolerances. Honestly, I'm still a little skeptical.

Yesterday I had my most recent TBM. The doctor did a specific treatment for the GRAINS. Dun-dun-dun....

I came home, and had these yummy rice-based veggie sticks a few hours after I got home. No bladder reaction. Then at dinner I had a slice of toast. NO bladder reaction. I did feel a little bit of heartburn, but this is probably pregnancy related as I get lots of this anyways with everything I eat. This morning I had 2 slices of divine toast. I had organic butter on it and it was yummy. Again, so far so good and no bladder reaction. I want to note that I had a slice of toast last week just to 'see' if for sure the previous NAET-like treatments were not working. Indeed, I had a very clear bladder reaction. No burning, but pressure, and feeling full when I wasn't full. So compared to last week, the TBM seems to be having an impact on my bladder! 

Now, I will continue to do TBM 1-2 times a week and slowly deal with other ingredients that I'm intolerant to. I will check back again later. My next appointment is on Monday. Stay tuned.

It will be interesting to see how permanently these treatments will hold, how many of the ingredients I'm intolerant to will actually be impacted by TBM, and if this is a long-term solution to my IC problem. Remember, the goal is REVERSAL! I hope that TBM will 'stick' longer than the NAET-like treatments did.

Finally, I thought I'd mention that although my NAET-like treatments were pretty expensive (over a hundie per treatment), these TBM ones are very affordable...25 bucks for a short session and 40 bucks for a long session. So far, I've been doing short sessions. I 100% feel like managing my finances will manage my stress which will manage my IC  So I thought I'd mention that too.

Remember, these are only my experiences. I'm not prescribing these to anyone. But, like I said, in the spirit of keeping everyone updated, there is my status update! If your IC seems to be a food-intolerance issue, I highly recommend exploring the food-intolerance reversal stuff I have been exploring. Don't rule something out just because it didn't work for me. Your body is different and what works for you may not work for me (and vica-versa, of course).

Here's to your healing and REMISSION gals and guys.

Best and hugs to all.
Paola

Everything has been a little crazy!

Hi Ladies! Sorry I went MIA for a while. Thanks to my IC pal Laura, I thought I'd update...

Things haven't been the best around here...but it's been an interesting journey, and I'm only renewed (and honestly a little tired at the same time) in my journey to find my cure.

So, yes, I got pregnant. This was a great surprise.  Then I felt great for like 2 weeks. Perfectly. I know that elevated hormones help my IC. Except for the morning sickness, all was peachy king. Then things started to slip and things that I could eat before started becoming a problem. That scares me. My list cannot become longer, right?

So I flew to Arizona for a SECOND round of NAET-like treatments (AAR) with a Dr. Dyllan Foster (see my checklist for more info). These NAET-like treatments are formally called "Advanced Allergy Relief" (AAR). I chose to do the treatments with Dr. Foster, rather than doing them with someone local here, because I really feel like he's perfected his method and approach. He uses a machine called BioVeda's machine BAX 3000 (I did my research on it and gave it a thumbs up), and because I've heard that NAET can be a little hit-and-miss for IC patients, I felt like his AAR approach and application was a little better than the traditional NAET stuff. Basically, in other words, if I was going to do NAET, then I wanted to do the best 'version' possible for me and my bod. That's why I picked AAR. I'm not necessarily making any recommendations. Just sharing my journey and happenings.

Anyhow round 1 of the NAET-like treatments (AAR) with Dr. Foster really didn't do much for me (I did round 1 like 8 months ago), but according to Dr. Foster, some people need up to 3 rounds. I was desperate to feed me and my baby more food, so I flew down for 2 weeks. He can do 2 treatments of food-groups per day, so I planned for 2 weeks (assuming that I'd be all over the place with food allergies). I was right. He said that he has never seen someone come back with so many groups of food that needed RE-treatment (round 2). I did the treatments. It was amazing. I have 2 'friends' who did the treatments (really they're friends of friends), and they worked like magic for them. These people don't have IC, but they have autoimmune issues that are food-based. Anyhow, by the end of the 2 weeks that I was in Az, I was literally eating whatever the heck I wanted. It was great...while it lasted.

By the time I came home, I felt that the treatments were slipping a bit. Indeed they were. This is not unheard of. NAET and Advanced Allergy Relief treatments don't always 'hold'. I didn't know exactly what that meant, and I didn't know what that would look like for me. Again, Dr. Foster would say that he has never had to re-treat people more than 3 times. At this point, I'm skeptical if his NAET-like treatments are right for ME. ****I 100% think they work for some people,*** but much like IC and other chronic diseases, I think the journey is finding the right puzzle piece that works for us in our healing. My body may simply not respond to NAET/AAR as well as your body may. I go back to AZ for Christmas with my family to visit my hubby's family (big reunion. Get excited...cowboys and boots...he comes from a very WESTERN family, although he's not much of a cowboy himself ). I will go and see Dr. Foster and probably do my 3rd round. 

At this point however, I'm not convinced that NAET/AAR is really the right path for me. One aspect of the problem is that I'm pregnant. Dr. Foster says that he's only had to retreat people up to 3 times under NORMAL circumstances. An abnormal circumstance would include anyone who has had something significant that would throw your system 'off balance' like, say, a pregnancy, or a surgery, or a car accident, etc. These things would merit a 4th treatment, perhaps. But each treatment is supposed to make your system stronger and more resiliant. 

For me, one tell-tale sign as to whether or not I will continue to pursue Dr. Foster's NAET will be when I go back and muscle test for my food allergies this December. If my results come back with a high amount of intolerances, then I think it may be a big indication that (maybe?) his treatments aren't for me. Again, when I came back this time, he said that he's never had such a long list of foods that needed RE-treatment on a person. But then again, maybe pregnancy really (really) doesn't agree with my body and IC. Maybe Dr. Foster's treatments will hold better when I'm not pregnant!? Maybe maybe maybe. Who knows? I am tempted to throw in the towel and give up. I was so disappointed to have eaten like an organic queen for about 2 weeks, only to have to go back to my limited-diet ways. The nice thing is that Dr. Foster charges 1/2 price for any re-treatment, so it's not that expensive. But money finds a way of leaving my house faster than it comes in.

But the truth is that something out there with Dr. Foster worked for a couple of weeks. It was real. I was perfectly fine, temporarily. My IC WAS FREAKING GONE FOR TWO WEEKS AND I ATE MUCH OF WHATEVER I WANTED. This tells me 3 things:

1) Fixing food intolerances, for me is the way to go. I'm going to stop looking for other issues in my body. I don't have candida. I don't have pudendal nerve problems. Hormone issues are really minimal (and my hormone levels have checked out as 'normal' time and time again! My IC is a food problem. That's my source. I'm 100% focused on that now.  I'm going to spend more time researching how to reverse food intolerances instead of researching how to reverse IC.

2) I now have confirmation that there is something out there that can reverse my food intolerance. Something DID work for me, albeit for only 2 weeks, but it was real and it worked. So I'm going to find my niche and reverse this IC bitch  (pardon my French. I swear more when I'm pregnant. Give me 6 or so more months and I'll tone it down :)

3) After my 2nd round of the Arizona NAET-treamtents, my IC is different. The burning is almost totally completely gone. I'm just left with frequency and sometimes a slightly spastic urethra (when I eat dairy). Before, I would have all these symptoms plus that BURNING BURNING BURNING. Sorry. You know what I'm talking about...no need to be overly descriptive . I think that modified symptoms are yet another sign that something real happened, and that I can expect a cure in the future!

In the meantime, I'm not giving up. I think I've been more emotional and perhaps a little more disheartened than usual. When my food intolerances creeped back, I was found sobbing in my room... but let's be honest, I'm pregnant and I cried when me and my kids were watching Mulan. Right. It's a Disney movie. Mulan, people! Yes. I'm probably a little more emotional than normal!

Here's my plan right now: I found a neat chiropractor that is does something called Total Body Modification (I heard about it on YouTube of all places...http://www.youtube.com/watch?v=RLJM8BZNs7g...she has a pretty neat story. She doesn't have IC, but sheesh, after hearing her tale, I felt pretty bad for what she'd gone through). 

So right now, I'm seeing a lady named Dr. Erica Statman in the Fairfax, VA area. I just went to her last week. It was just a get-to-know you visit, but her pricing is very affordable (between 25-40 dollars after the first initial visit). My specialist co-pays are 30$ anyways, so this is pretty good pricing! The bonus is that she specializes in working with pregnant women and children. That made me happy because, you know, I'm pregnant and food intolerances are definitely linked to my pregnancies. Oh, and like the AZ stuff, I can do TBM while pregnant. 

Dr. Statman also told me that she felt like NAET was rather inconsistent. She said that it's amazing, it works for many people, and that she herself used to do these treatments, but she also felt like the results were inconsistent, and for someone who is paying cash for the treatments (no insurance coverage!), she needed something that was more consistent. Enter TBM.  

Looking forward: 

Dr. Statman was also very honest with me. She told me that her son had a lot of food-intolerance problems, and that neither NAET nor TBM worked for him, but that there's a doctor about two hours away that she said "is most prolific in reversing food allergies." She wants me to go see him after the pregnancy is over. His name is Dr. Richard E. Layton, and he does Low Dose Allergy. If I choose to go to him after baby is here, it will be a bit of a drive for me, and it will be expensive when you factor in the treatments (no insurance, of course), and the driving gas, etc, but I will do what it takes to get my life back. Some people spend hoards and get into debt for infertility/adoption...well, I'm willing to do what it takes to get better. 

So, in addition to TBM, I have other things I'm keeping in my back pocket to reverse my food allergies. Here is my ongoing list of potential treatments:
-Advanced Allergy Relief (similar to NAET but different): Hasn't worked for me thus far.
-NAET: I never tried it, and I don't think I plan to since I did AAR.
-BioSET. More info here: Haven't tried it.
-Helminthic Therapy that  I heard about here (careful...if you easily feel squeamish, prepare yourself!): Hopefully this will be my last resort and I won't need it.

I 100% believe I will get better someday. Sooner than later. Those 2 weeks of eating whatever I wanted were only an indication that I CAN GET BETTER. I have to see it that way, because that's what it is. There are answers for me out there!

Ok, so let's pause the whole IC talk.

Back to me being pregnant...so I started bleeding like 3 weeks ago! It was scary and kind of gushing. I totally thought I was miscarrying (never had that before). I ended up having a subchorionic hemorrhage, which my midwife says, is a big scary word for normal bleeding in pregnancy. 90% of women who get this go on to have normal pregnancies. Basically, when you get pregnant, your body makes a placenta (duh). Then your placenta reaches out these 'fingers' that attach to the uterus wall. Sometimes these fingers will hit a blood bubble that will pop and bleed. The bleeding can coat the bladder and make it hard for the placenta to attach? Or the bubble can push the placenta away from the wall and make it hard for the fingers to reach the uterus and attach. Something like that. I've GOT to start bringing a whiteboard to my dr's appointments so that they can actually show me what they mean. My midwives aren't used to me yet  They think they can give me quick easy answers and that I'll be satisfied.  Anyways, I went on bed-rest for a while, and now I'm just down to spotting old brown blood. For like 2 weeks! It's a little worrisome but mostly annoying. In my heart I think this will all turn out fine. Once everything is healed (and it typically is during the 2nd trimester), I go back to having a 'normal pregnancy'. I've never ever had any sort of complication in a pregnancy before, so this was new to me. I have an ultrasound this Friday, and I REALLY hope things will have significantly improved!

Doesn't that sound fun, though? IC + Pregnancy + 3 kids + a tricky pregnancy where I have to 'take it easy'? It's super fun. Thanks to my super mom who is here helping out!

Speaking of super...you're all super awesome and cool gals. I appreciate your positive attitude and kind words. To me, hope can be a fragile thing, and I work hard to protect mine. I appreciate having positive friends in my life, and I hope my words encourage you .

Paola
P.S. Here is yet another great article linking Food Intolerance to IC. ENJOY! 

Pregnant = Happy Bladder

Found out that we're expecting our fourth bundle of joy. Surprise! But it is a welcomed one. I love talking to nurses over the phone.

"And what baby is this?"
"It's my fourth."
[pause] "First?"
[ahem] "No. FOURTH!"
:)

The most interesting find for me regarding IC is that I'm 100% symptom free while pregnant. This happened to me last time too. However, last time, my list of food intolerances grew while I was pregnant.

Perhaps the leaky-gut-healing that I've done thus far will prevent me from increasing my list of food intolerances? Maybe.

Perhaps I will stay in remission after this pregnancy? Probably not.

But I'm learning and journaling the entire way, and I hope my notes help.

Paola
P.S. This DOES confirm though, that for me, Hormones ARE A BIG IC LINK!

Summer Experiment

  I had my first major flare in August, 2012 after some very stressful events, hormonal changes, and poor eating. Since that time I've had monthly flares that very much coincide with my menstrual cycle. I'm one of the ICers that has issues with estrogen and feels better during times of balanced (luteal phase, the 2 weeks before your period) or low balanced (the first three days of my period). I'm using both allopathic (conventional medicine) and homeopathic ways to treat my IC. All of my health practitioners are aware of who I am working with and what I am using to treat my IC.

Since October, I've started to see some improvement that have resulted in me having more good days than bad. What has been effective for me has been acupuncture, dietary changes, meditation, aloe vera pills, atarax, and herbs to balance out my hormones. I'm also taking elavil, uribel, cystoprotek, d mannose, magnesium citrate, and have gone gluten and dairy free. I honestly don't know if anything in the second set has helped any but I continue to take them.

I wanted to use the summer to experiment on myself. I'm not looking to take myself off medication or implement any large and/or intense diet changes or cleanse. I just want to see if small changes make a noticeable difference if I do them consistently. I'd like to use this thread to track my progress.

As of this starting point, I am a 41 year old woman with red hair who is the walking definition of inflamed. I had bladder issues since I was a child and underwent two urethral dilations (first one at age 4) which set the stage for post procedure ptsd and extreme health anxiety issues. I had no issues after the age of 14 (when I got my period) until I was in my mid 30's when I my hormones started to change (very mild IC that was only triggered by food). I went into remission after having my son at age 37 and didn't flare again until I turned 40. My symptoms on a regular basis are burning and urgency. I don't have frequency issues unless I'm in full flare.

This summer, I will be switching over to a diet that includes more animal protein. I will also continue to meditate daily but will be adding in gentle yoga. I'd also like do gentle daily detoxes like skin brushing. Lastly, I'll be syncing up my daily activities and diet with a new program that has women balancing their lives along with their cycle. 


7/5 Update-

I've been doing a lot of work as of late with meditation which has been a game changer for me. I believe that with the herbal balancing, body work, and some dietary changes, I've been feeling a lot better. Still on meds but I'm going to talk to my Dr this week. I'm fine with being on them for a bit longer, I'm just curious to see what her thoughts are.

I've been looking into a low histamine diet lately. I have a lot of symptoms of systemic inflammation that correspond to high histamine levels. That plus the one med that I do know had a positive effect on me was Atarax. I've been reading the Low Histamine Chef and her diet is doable. She had IC-like symptoms (nocturia, painful urination) but since she had other equally harsh symptoms elsewhere in her body, she didn't treat her condition as just IC. She has an ebook that talks about different mast cell conditions and narcolepsy (which I had from 14 until this major flare in Aug) is one of them as well as IC, obviously. I do think that there are more and more studies pointing to the over stimulation of the nervous system contributing to conditions like IC. 

Anyway, I think all of these things- hormone balance, alkaline diets, meditation contribute to a calmer nervous system. The role of histamine and hormones is pretty crazy and definitely worth a look.

Now, on to milestones. I did have a mini flare last month which bummed me out but my herbalist was happy that the pattern was shifting. I'm trusting her on this one.

1. I'm wearing jeans on a regular basis, even some stretchy close fitting ones which are actually really comfortable.
2. My husband and I hung out with friends until 9:30 one evening without me getting flarey or freaking out that my evening schedule was off.
3. I scheduled a trip for us (including our son) to DC in August. 
4. I'm starting my own business! I'm going very slowly. I used to be crazy type A professional for years, so this one is hard.