Paola's Check-List


To understand your IC, we think you need to come closer to understanding what variety of IC you may have. Again, it is our belief that IC is a systemic issue, and not one that is just isolated in the bladder.

Below is a checklist of areas Paola has looked into for her type of IC.  Ruling out each potential IC root-cause helps her discover the potential source(s) of the problem. Finding a doctor who will listen to your concerns, and who is willing to run the labs for each of these areas is sometimes difficult, but it may be well worth the effort.

Bottom Line for Paola: Currently, Paola is completely pain free, drug free, and virtually symptom free due to her checklist below. Paola has manageable flares just before her period starts.


Oxalates
  • Oxalates are sharp tiny crystals that should be eliminated in the digestion process. For some people, however, this does not happen. The result often produces frequent kidney stones and/or IC. These crystals are particularly painful in the bladder because while they are minuscule, they are sharp and cut the bladder tissue.
  • Paola did the 24 hour oxalate test. This involves collecting urine over a 24 hour period and submitting it for analysis. If your overall oxalate content is high, you may have identified a possible cause for your IC. Note: This test is typically covered by health insurance companies.
  • http://www.ic-oxalates.com
Hormonal imbalances (Thyroid? Adrenals? Etc.)
  • Any doctor will agree that hormones, especially sex hormones, have an impact on the tissues of a woman's pelvis.
  • Paola did blood work during the luteal phase of her menstrual cycle (day 21 of a 28 day cycle). Results indicated that her hormones were very low when they should have been at their highest. This is also around the time when she has her monthly flare. So Paola began figuring out why her hormones were off. She is only 29, and her hormones should still be functioning normally.
  • Adrenals contribute to adequate hormone levels. There are various methods of assessing the adrenal glands, and Paola had a natural doctor order her labs for this. She did the saliva-based lab where she collected her saliva during certain hours of one single day. Paola's test was done through a non-traditional lab called Metametrix. Results of the lab indicated that her adrenals were not functioning properly. She addressed her adrenals by taking DHEA hormones, eating frequently (no feeling hungry!), resting a full 8-9 hours of sleep, and taking other supplements. After 3 months of addressing the adrenals, Paola did not immediately find relief of her IC symptoms, and because it didn't seem to hurt or irritate her bladder, it was worth a try. It is inconclusive whether or not this treatment benefited Paola's overall IC healing. Note: The Metametrix lab is not covered by regular health insurance.
  • Like with the adrenals, the thyroid is also part of the endocrine family, and your thyroid has much to do with your hormone production. Paola is currently in the process of running various thyroid related labs to identify how well this organ is functioning. These labs include TSH, T3 free, t4 free, TBG, reverse T3, thyroglobulin Ab, TPo, HgBA1c. Note: I'm no medical expert, but I believe all these labs are to identify thyroid function. All should be covered by regular health insurance.
  • Currently, Paola is further exploring her thyroid by self-collecting data. One test is to take your temperature for one week, once in the AM and once in the afternoon. You must take your temperature at the exact same time every day (i.e. Paola wakes up at 5:45 and takes her temperature, and then she set an alarm on her phone to remind her to take it again at 3:30 pm). If your temperature is lower than 98.6, then this could indicate possible thyroid problems. Paola's temperatures were often in the 97 range, but it occasionally dipped into the 96 range! She collected this temperature data for 1 week. During the few days that she ovulated, her temperature went up to 98 degrees, but considering that one's body temperature should go up past 98.6 during ovulation, 98 degrees is still considered low.
  • Other indicators to thyroid problems include elevated cholesterol, lack of sleep at night, lowish blood pressure, and more. Paola has many of these tell-tale signs.
  • Currently Paola is awaiting lab results from her natural doctor, Dr. Richard Duca, and she will update on treatment plans, if applicable.
Endometriosis
  • Because Paola occasionally has some significant pain and excessive bleeding during her menstrual cycle, she wanted to identify if she had endometriosis. Paola's pain is described as an upward shooting pain inside her pelvic/anal area that only comes when she is both on her menstrual cycle and is having some sort of bowel movement or movement of air (gas). 
  • The only way to identify endometriosis is to have a laparoscopic procedure where the doctor looks inside the pelvis. After interviewing 3 separate doctors, Paola decided to do her procedure with Chief Surgeon and Gyno Oncologist Dr. Paul MacKoul (Note: Dr. MacKoul has a very informative patient education section of his website regarding pelvic surgery & the dangers of robotic surgery). 
  • Results of the laparoscopy indicated that Paola did not have endometriosis. Apparently, she gets painful gas and bowel movements when she's on her period, even though she is not constipated. :(. Lovely.
  • If you ever undergo surgery, be sure to request a pediatric cathedar. They are smaller and cause less pain/damage to someone with IC.
Pelvic surgery
  • Many IC patients have described that the onset of IC occurred after a pelvic surgery, like a hysterectomy. This is yet another factor that does not seem to affect Paola, although she did consider it as she had an appendectomy before the onset of her IC.
  • To rule this out as a possible trigger, Paola created a linear timeline of all her medical records, beginning about 2 years before the onset of IC. Based on how her health was during and just after her pelvic surgery, she does not think pelvic surgery had any adverse affect on her bladder. 
  • However, out of precaution and also due to the potential endometriosis (described above), Paola sought medical opinion from Dr. MacKoul.
  • Dr. MacKoul explained to Paola that pelvic surgery can create significant scar tissue which fuses the bladder to other pelvic organs/tissue. This fusion can disrupt the bladder because the bladder is now "stuck" and "glued" in place, when it should actually be in a loose environment. Such scar tissue can potentially cause IC. To remedy the problem, a doctor can clean the scar tissue and place a temporary barrier to prevent the bladder (and other organs) from getting 'glued' inappropriately as scar tissue reforms post-surgery.
  • This is another reason why Paola opted to have the laparoscopic procedure, to make sure significant scar tissue from the appendectomy wasn't adversely affecting her bladder.
  • Results were that this was not a concern for Paola.
Systemic candida
  • Candida is a specific pathogenic variety of the yeast family. It thrives in an acidic body, in sugar (both natural and added), and it is opportunistic. This means that it will take advantage of what you are eating and grow out of control if allowed. 
  • Paola now has 2 different IC friends who have completely resolved their IC by addressing their systemic candida. In both instances, these patients needed to request that their Urologist run labs to identify systemic candida.
  • Some potential labs include: Urine culture where candida can grow, a vaginal PCR test that identifies various problems including candida, and blood work where candida can be identified. Note: These tests are all covered by regular health insurance, however the PCR test sometimes needs pre-approval as it is a very expensive lab test. Check with your doctor to see if he performs the PCR test, and check with your health insurance to see if it is covered.
  • I have also heard that you can do a comprehensive Digestive Stool Analysis with a gastro-intestinal doctor to identify possible Candida. Paola doesn't have much experience with this, but she'd love to hear if you have ever done this test.
  • Non-traditional labs can do a stool-analysis where they identify if your stool has too much candida. Paola has had this test done with the help of her natural doctor. Note: This test is most likely not covered by regular health insurance.
  • In the end, Paola's labs did not identify any systemic candida, however, as a precaution and because systemic candida is indeed hard to identify, Paola's natural doctor ordered that she take 100 mg of diflucan for one week, followed by a 3 week break. This process was to be repeated for 3 cycles. Note: Diflucan is not considered to be an especially problematic or toxic drug, but because Paola and her natural doctor want to minimize negative impact on the liver/kidney (as all synthetic drugs force these to work hard), her doctor had Paola 'pulse' her week-long diflucan doses with 3 week breaks.
  • Paola also did some hard-core diet modifications to clean out her potential candida. This included doing 3 rounds of colonic cleanses, drinking lots of veggie smoothies, and avoiding all sugar (both natural and added). Doing this candida cleanse was one of the hardest things Paola has done to try and deal with her IC, as it took significant discipline to follow the Candida Cleanse Diet. More info the candida cleanse Paola did is available here: http://www.thecandidadiet.com/cleansing.htm 
  • Results of the candida cleanse: Paola's IC symptoms were significantly improved during her first few days of taking dicflucan, but...
  • CORRELATION IS NOT CAUSATION.
  • Paola later found out that the significant reduction in IC symptoms were not due to the candida cleanse and the diflucan, but instead it was due to the fact that she ceased eating bananas.  Because Paola was on the Candida Diet during the diflucan, she avoided all sugars, and bananas--which are extremely high in natural sugars--were taken out of her diet. Weeks later she figured out the connection: Paola is intolerant to high, concentrated amounts of potassium, and with her regimen consuming 3-6 bananas a day before her candida cleanse, the elevated ingested potassium was bothering her IC. [See Food Intolerances, below, to read more about Paola's potassium ntolerance]
  • Helpful information on Candida is available here: http://www.wholeapproach.com/candida/diagnosingcandida.php
  • Dr. William G. Crook's book The Yeast Connection Handbook is an EXCELLENT resource for learning about Candida issues, and he specifically addresses how candida overgrowth can affect the bladder & instigate IC.
  • Note: As far as Paola's research has shown, beneficial yeast does not promote make systemic candida problems worse, and so Paola uses beneficial yeast in her cooking as it is a good holistic ingredient. 

Pudendal Nerve Problems (i.e. Pudendal Nerve Entrapment, PNE)
  • The pudendal nerve is one of the nerves that reaches the bladder. If it is compromised (i.e. pinched), it can cause IC pain.  
  • Review the following interesting (rather lengthy) video addressing how IC and Pudendal Nerve Entrapment (PNE) are often confused. http://www.youtube.com/watch?v=DxBNcr80Qjw
  • There are exercises that can be done to identify if your bladder pain is a result of PNE, and one of the tell-tale signs of PNE is that your bladder is in significant pain when you're in the sitting position.
  • PNE does not seem to be a primary issue for Paola.
  • Paola's Chiropactor, Dr. Frey hangs her from her feet on a specialized table called the inversion table. The position of being hung upside down helps loosen the pelvic muscles, and enables the pudendal (and other) nerves to have better alignment. Paola has not necessarily seen any significant reduction in IC symptoms due to this exercise, but because it does not hurt, she does this weekly to promote further healing. 
Chiropractic Work
  • In addition to doing the inversion table, Paola has a weekly 20 minute sessions doing diathermy therapy at  Dr. Frey's office (see a diathermy machine similar to the one that is used on Paola here). 
  • There are always precautions one should consider when doing any kind of IC therapy, but for Paola, diathermy has been a very positive experience. Because this therapy increases the white blood cell count by applying heat inside the bladder (similar to how a microwave heats), Paola's bladder experiences warmth and instant relief during this therapy. This therapy is intended to speed up the healing of her bladder tissues.
  • Paola also is seeing her chiropractor to improve the alignment of her spine, which benefits holistic healing by allowing nerves to better communicate uninterrupted by spinal subluxations (when your back is 'out').
  • To find a great chiropractor in your area, Paola recommends using the following website, which identifies chiropractors who are trained in and equipped for holistic healing: http://www.findagreatchiro.com
Acupuncture
  • In her chiropractor's office, Paola has access to a acupuncturist. In order to promote holistic healing, Paola visited the acupuncturist for 8 weeks.
  • Paola loved her acupuncture visits as it promoted de-stressing and overall wellness, however, due to cost and due to the fact that it was not providing any significant IC relief, she ceased going.
  • Paola has a couple of IC friends who have found a significant reduction in symptoms by doing acupuncture, and she intends to return to this therapy as finance allows.
 Food Intolerances (Leaky Gut)
  • For Paola, identifying food intolerances was the single most important thing she has ever done to deal with her IC pain.
  • At first, she learned that she was intolerant to gluten. Paola worked with the nutritionist Fred Emmite and learned how gluten and IC can be strongly connected.  Getting off gluten put her IC into remission for 1 year. Note: Fred Emmite & Gyno Urologist Peter Lotze are currently doing a research study on the relationship between gluten and IC. Read more about it here. It is also mentioned in the Better Bladder Book.
  • Simply put, if you or anyone in your blood line has a gluten problem (i.e. Celiac disease) or any other autoimmune disorder, then Paola recommends that you seriously consider how gluten is affecting your bladder health.
  • But getting off gluten only temporarily solved Paola's IC problems. Soon after she was gluten free and symptom free for 1 year, Paola's IC symptoms returned, and Paola learned that she was intolerant to corn. Over the course of 2012-2013, her food intolerance list slowly began to increase. It seemed that as soon as she figured out one other ingredient that was making her flare, she would have a few weeks of peace, and then a new ingredient would suddenly make her flare. 
  • Currently, she avoids the following foods:
  1. Foods high in potassium, (Note: Paola still consumes a lot of this essential mineral, however she eats it in small amounts throughout the day rather than all at once in something like an asparagus or a banana. There are a couple of ways of identifying potassium intolerance, with the easiest being to consume foods high in potassium and await a response. Another more painful procedure is described here.)
  2. All grains, including corn and gluten,
  3. Dairy,
  4. Eggs,
  5. Potatoes (which are part of the nightshade family, so Paola avoids the entire nightshade family as a precautionary measure),
  6. NSAIDS (Non Steroidal Anti-inflammatory DrugS like Advil),
  7. Soy,
  8. and surely there is more!
  • Because the the Paleo Diet, and more specifically the Auto-Immune-Protocol (AIP) version of the Paleo Diet avoids most all of the above listed foods, Paola is currently on the AIP Paleo diet. This does mean that in addition to the above 'flaring' foods, she also avoids nuts (which currently do NOT bother her bladder), beans including chocolate (which also do not seem to bother her bladder), as well as other ingredients, but she hopes that by doing so, she will heal her leaky gut and repair the auto-immune aspect of her illness.
  • Paola is currently exploring the option of doing NAET treatments for her food sensitivities. NAET treatments, or Nambudripad Allergy Elimination Technique, have successfully reversed food intolerances for people suffering from various infirmities, including IC. In her IC book Along the Healing Path, Catherine Simone discusses how NAET has benefitted her and improved her IC.
  • Paola has already traveled to Arizona to do one set of NAET-like treatments with natural doctor, Dr. Dylan Foster. After her first set of treatments, she did not find a significant reduction in IC symptoms. Because some patients need to be retreated up to 3 times, she plans to return to AZ and continue her food-sensitivity treatments later this year. Benefits of this treatment are yet to be determined for Paola
  • Because beneficial bacteria (probiotics) help Paola's leaky gut, she takes a powerful probiotic called VSL#3. Because it needs to be shipped overnight and packaged in ice, the place from where you buy this probiotic is important. Paola buys her probiotics online from her Houston Nutritionist, Fred Emmite: Nature's Pharmaceuticals.
pH: Acidity vs. Alkalinity
  • Identifying bodily pH is an easy, cheap, and quick way of seeing (1) where your body's pH lies, and (2) how your pH affects your IC pain.
  • To check your pH, purchase pH Testing Strips and check the acidity/alkalinity of your urine and saliva each time you void your bladder for at least one week. Paola checked her pH for 3 weeks.
  • Paola found direct correlation between her bladder pain and the acidity in her urine.
  • To improve her alkalinity Paola read the book The Acid Alkaline Diet by Christopher Vasey. Much of Paola's AIP Paleo diet has already made her body more alkaline, as grains and sugar are very acidic, and she does not eat much of either. Paola does consume grass-fed meats, and these are acidifying. However, overall, her pH is more alkaline even with the consumption of meats.
  • Paola also drank Evian water for several months because Evian is touted as 'alkaline water'. Drinking Evian was both good for her bladder but bad for her bank account. So, Paola decided to invest in a smaller/cheaper version of the Kangen Water purifying system (about $1200 USD). The Kangen water machine makes water 10 times more alkaline than Evian water, and after making payments for 6 months, Paola did not have to spend any more money on water.
  • Overall, Paola feels that increasing the alkalinity of her water and of her body has improved her bladder discomfort. To be frank, peeing Kangen water feels much better than peeing other waters. 
  • This improvement in her IC pain was not as significant as the the above noted diet changes were, but Paola did notice marked improvement by addressing her pH.
  • Below are 2 at-home labs that you can do to identify how your pH works. As soon as I learn how to INTERPRET these, I'll let you know :)
pH test Part 1: 
This test is a dynamic measurement of a body's alkaline mineral reserves. Alkaline minerals are one of the systems that your body uses to deal with acid and alkaline imbalances. We are looking to see whether your body has the reserves necessary to respond to an acid challenge. During this test, you will challenge your body with acid in the form of lemon juice. The initial acidity of the lemon juice will cause saliva to buffer the acidity of the lemon juice over the course of a few minutes by becoming more alkaline. We expect the saliva to get more alkaline to show that the body can respond to an acid challenge by marshaling up the necessary alkaline minerals.
This test also allows us to see how stress and sympathetic dominance impact minerals reserves in your body. Increasing levels of stress can cause the loss of these primary mineral reserves. Instructions are:
1. you will be given a roll of pH paper to do this test, which will take about 7 minutes to complete and consists of taking the pH of your saliva 7 times.
2. Cut seven 2: strips of pH paper and lay them out on a paper towel.
3. Prepare your lemon juice during: 1 tablespoon of lemon juice and 1 tablespoon of water.
4. To take a saliva pH reading, make a pool of saliva in your mouth and dip half of the strip into this pool of saliva, remove and measure pH on the chart that comes with pH paper. Do not put the whole strip in your mouth or hold it in for too long
5. Record this first reading as a baseline on the chart below. 
6. Dring the lemon drink, check your pH again and start timing.
7. Test and record your saliva pH every minute for 5 minutes.
8. Record all your results in the form below. 
Chart for recording your results:
Date of test: _____
Baseline _____ Lemon ______ 1 minute: _____ 2 Minutes: _____3 Minutes: _____4 Minutes: _____5 Minutes: _____
Date of test: _____
Baseline _____ Lemon ______ 1 minute: _____ 2 Minutes: _____3 Minutes: _____4 Minutes: _____5 Minutes: _____
Date of test: _____
Baseline _____ Lemon ______ 1 minute: _____ 2 Minutes: _____3 Minutes: _____4 Minutes: _____5 Minutes: _____

pH test Part 2:
Instructions: 
Check Salivary and Urin pH first thing in the morning after awakening. The testing should be done within the same 1 hour period each morning. For salivary pH reading; cut a 2 in. long pH paper strip and place one end of strip under tongue for 1 minute. Take pH paper out and match color with graph on dispenser; record reading on corresponding graph. For the urin pH reading, follow the same steps as salivary instructions. When testing urine, you can use a cup to collect urine and dip the end of pH paper into cup or pH can be tested by placing paper on urine stream when urinating. Please write the results on corresponding graph. This should be done for one week.
SALIVARY pH RECORDING GRAPH
pH 8.0---------------------------------------------------------
pH 7.5---------------------------------------------------------
pH 7.0---------------------------------------------------------
pH 6.5---------------------------------------------------------
pH 6.0---------------------------------------------------------
pH 5.5---------------------------------------------------------
pH 5.0---------------------------------------------------------
pH 4.5---------------------------------------------------------
Days    I  I  I  I I  I I  I I  I 
           1 2 3 4 5 6 7 8 9 10 

URINE pH RECORDING GRAPH
pH 8.0---------------------------------------------------------
pH 7.5---------------------------------------------------------
pH 7.0---------------------------------------------------------
pH 6.5---------------------------------------------------------
pH 6.0---------------------------------------------------------
pH 5.5---------------------------------------------------------
pH 5.0---------------------------------------------------------
pH 4.5---------------------------------------------------------
Days    I  I  I  I I  I I  I I  I 
          1 2 3 4 5 6 7 8 9 10

My Conclusion:
I have a form if IC that is gut-realted. To heal myself I'm on, what I call, Paola's IC Trifeca:

First: DIET... I definitely suffer from leaky gut. My entire diet is focused on healing the gut. So I avoid grains, which are stressful on the gut, I drink Raw Milk which infuses my gut with Probiotics, I am slowly eating naturally fermented veggies--I'm going slow on this because people with IC typically are intolerant to Yeast, as is my case, the nuts I eat are soaked and dehydrated because it removes the physic acid which is stressful on the gut, I have been on the anti-candida diet (as anyone with leaky gut probably has some level of candida overgrowth), and today I eat 0 processed sugar, and minimal honey. I do eat fruits. I currently am on the GAPS diet, which allows for milk and eggs if you can tolerate it. Before I could tolerate milk and eggs, I was on an even stricter diet which was the AutoImmune Paleo Diet.  Diet was the single most amazing decision I made to remove pain from my daily life. I only suffered minimal discomfort when I addressed my diet. 

Second: HOMEOPATHY... Homeopathy has been the next most powerful element in my healing journey. I have bloggged a lot about the form of homeopathy that I use (The Banerji Protocols) and who my homeopath is (Joette Calabrese). In a nutshell, homeopathy is a non-toxic natural form of medicine that uproots disease by educating your immune system to respond appropriately to disease. It uproots both chronic and acute diseases. Homeopathy has made my symptoms so much better, and homeopathy has given me a way of staying away from antibiotics for acute situations. SO I have cured 3 confirmed diagnosis's of infections without antibiotics ever since doing homeopathy: Strep throat, and 2 bladder infections (one strep-related and one EColi-related). Because antibiotics kill beneficial gut bacteria, staying away from antibiotics is a huge element in healing my leaky gut. 

Third: Food-Based Natural Supplements .. I tried supplements on and off for years, and I always felt like there was a place for supplements, but I didn't like the guessing game of 'trying different supplements." Some supplements seemed to do nothing, some made my bladder feel worse, and I couldn't tell if some were helping. That is when I worked with Randy Grant of Divine Nature in Mesa, Arizona and began doing my 'Live Blood Analysis'. I feel like I'm feeding my body the nutrition that my leaky gut prevents me to absorb, and this will help my homeopathy continue to heal me. These supplements feed my vital force so that I can continue to heal. 


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