Conditions, IC Stories, Interstitial Cystitis

How I Healed from Interstitial Cystitis

In this post I’d like to get a bit more personal rather than practical. I would like to talk about how I healed from interstitial cystitis.

Contrary to common belief, I have experienced on myself that it is possible to recover from this condition. I believe that this is possible for each of us but that the journey might be a different one.





Why?

Because the body always tries to heal…When we have a wound, it heals. If we get an infection we get a fever and combat it.

We just need to let the body do its job.

How I got interstitial cystitis

Chronic disease is usually multi-factorial and therefore there probably is no one trigger, but multiple ones.

I have always been prone to bladder problems and so has my mother and relatives on her side of the family.

My earlier experiences consisted of bladder infections and sometimes overactive bladder (especially when I got cold).

Later, this turned into full blown urinary tract infections that also affected my kidneys.

I also suffered from IBS for most of my life, although I was never aware of it.

Then, a few things happened in my life: I went through an extremely stressful period that included graduating from uni and a break-up and I lived in a cold and mouldy house and my immune system was suffering.

When I went on a holiday to Switzerland, where it was extremely cold, I got another bladder infection. I couldn’t be bothered to go to the doctor over there and left it untreated.

The infection travelled up to my kidneys.

A circle of antibiotics and recurrent infections began.

After a few courses of antibiotics, the bladder pain and the frequency started to be present constantly. Thinking it might be a ‘rest infection’ I took another course of antibiotics.

That’s when my interstitial cystitis and IBS really kicked off.

A stony path to healing

I have been raised by a mother who always favoured natural remedies over orthodox medication so I was reluctant to follow the orthodox path. I had also not gotten much help from the doctors I visited and felt thoroughly let down.

Additionally, I was not prepared to live a life in chronic pain. I could not imagine myself being someone who has a chronic disease!

It was starting to really get in the way of my life and relationships.

Therefore, I started looking for answers.

I came across candida and the raw vegan diet. Having already been a vegetarian for most of my life, the switch seemed to make sense. I started juicing and eating superfoods. I took natural antifungals to ‘kill off’ the candida I thought I had. I cut out sugar and processed foods.

6 months later, my bladder still hurt and my gut was on fire. I had extreme food intolerances and every bit of sugar or starch made my bladder flare up. I was cold all the time.

All the while, I kept researching.

Recovery from interstitial cystitis

Things finally started to get better when I learned about the gut microbiota and probiotics. I started eating fermented foods and felt better. But the pain was still there.

Two books then changed my approach completely: Nourishing Traditions and The Gut and Psychology Syndrome. I learned how animal foods contain nutrients important for gut and bladder wall integrity and hormone health. I learned how the gut microbiota can make or break our health and how antibiotics kill these bacteria. I realized I had many of the symptoms associated with poor gut health and nutrient deficiencies.

I decided that I needed to put animal foods back into my diet. When I first started to eat eggs again, I could not get enough of them. My body was craving them so much, I couldn’t think of anything else. My body was clearly telling me something!

I started consuming bone broth and a few months later I ate meat for the first time in over twenty years.

Then I went on the GAPS diet to heal my gut.

After 6 months on the GAPS diet my interstitial cystitis was gone!

Steps I took that helped me recover from interstitial cystitis

  • I cut out sugar, processed foods, grains, dairy (apart from fermented dairy), soy and hydrogenated oils
  • I consumed nutrient dense natural animal and plant foods
  • I only consumed organic vegetables and grass-fed/free range meats
  • I consumed probiotic rich fermented foods
  • I consumed glycine rich bone broth and gelatine that contain nutrients needed for gut and bladder wall repair
  • I consumed healthy fats including butter, ghee and coconut oil and upped my omega 3 intake from cod liver oil
  • I removed foods I was intolerant to
  • I removed toxic cleaning products and personal care full of chemicals and switched to natural products
  • I removed plastics
  • I spent time outside

Conclusion

Although my case is only anecdotal evidence, the steps I took to finally recover all have evidence behind them.

I finally healed because I let my body heal. I removed things that stood in the way of healing and added things that supported healing.

Today I follow a paleo type of diet and I am healthier and stronger than I have ever been.

My interstitial cystitis only flares up very occasionally and briefly (usually if I’ve eaten something that doesn’t agree with me or if I’m extremely stressed).

I believe that the steps I took can help anyone to feel better and that chronic disease does not have to be a sentence for life.

Making changes is not easy – but neither is being in pain!

Now I’d like to hear from you. Are you suffering from interstitial cystitis? Have you made changes and felt better, or have you recovered fully? Let me know in the comments!

Update: For those of you who want to know more about my experience with the GAPS diet please read ‘My Year on the GAPS diet’.



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How I Healed from Interstitial Cystitis | Bladder-Help.com

63 Comments

  • Reply

    Rosie

    June 27, 2017

    Hi Layla.

    I really love your page – I have recently discovered this link between leaky gut/bladder and IC and want to start a diet. However I am seeing some cross overs that seem to contradict – ie. I know that soya is a huge flare for my IC however the diet says that we need to consume more fermented products? when you set out on this diet did you experience flare ups and just hope for it to be worth it? any advise would be greatly appreciated!

    • Reply

      Layla

      June 27, 2017

      Hi Rosie, thank you! What kind of diet are you looking to go on? I experienced a lot of flare ups when I went on a raw vegan diet. Once I introduced animal foods again and went on the GAPS diet nothing got worse (the pain was constant anyways) and after 6 months the pain slowly went away. I’d be wary of soya as it is quite an inflammatory food and an allergic trigger for many people. Fermented foods, though generally beneficial because they contain friendly bacteria in their raw state, can be an issue as many IC sufferers have raised mast cells/histamine and fermented foods contain histamine, which may exacerbate symptoms. Fermented products don’t have to be soy either, sauerkraut would probably be a better choice (though if you do want to eat soy, have a fermented form as it’s more beneficial). Healing can make us feel worse first (i.e. produce herxheimer reactions) but the way to gauge if a diet is working would be that after a short period of feeling worse you start feeling better (this may move up and down a bit).

      • Reply

        Roy A Wagner

        November 6, 2017

        In the USA, I believe that most Soy Beans (which I believe to be what you are calling “soya”, are GMO’ed to be resistant to Monsanto’s RoundUp which is Glyphosate. This is the bad stuff that we had to get rid of in order for my wife, Kathleen, to get over IC. The rest of the story is in the earlier story on Layla’s blog.
        We still use the bone broth, the Sauerkraut, the Organic produce from our Garden, etc. Still also using the Epsom Salt Baths. // Roy 6-November-2017

        • Reply

          Layla

          November 6, 2017

          Thanks for sharing! Yes, I believe it’s hard to find non-GMO soy beans anywhere really, even organic ones could be contaminated (or so I’ve heard). Soya is a difficult food anyways, I would not necessarily recommend it in any case because of high anti-nutrient content.

  • Reply

    createinhimalways

    July 30, 2017

    Layla, thank you so much for your great information. Do you remember if your IC became much worse when you began your protocol? I did fodmaps for a month and then moved into the GAPS right after that and have been following it for a month. The IC is worse than usual though at this point. I am feeling discouraged. Any advice/encouragement?

    Thank you, Angie

    • Reply

      Layla

      July 31, 2017

      Hi Angie, I don’t remember the IC getting worse at that point but I had some other ‘healing symptoms’ for a while such as skin rashes and a cough. Before, when I did raw/vegan/juicing my IC got worse an that was not a healing effect it was in fact just getting worse from that diet.
      There can be some initial worsening of symptoms (potentially due to unfriendly bacteria dying off) but this should get better after a couple of weeks. If it keeps getting worse, the diet isn’t working for you – in this case don’t think you need to try harder but try something else (like AIP). Also ask yourself if sticking to the diet is causing you a lot of stress, as stress can be a massive flare for IC.

  • Reply

    Mary

    September 27, 2017

    Hi. I recently finished two rounds of antibiotics for a UTI. First was Macrobid, second was 10 days of Keflex. Nothing was ever cultured (longer story) A month or so after finishing I thought I was getting another UTI. I had bladder pressure and had to pee every 20 minutes. Dr tested urine( yesterday) and it was negative for bacteria. (I had been taking a probiotic that was specifically for bladder health)
    Anyway, I’m still having the pressure and urgency but without pain or burning when I do pee. I’m seeing a urologist tomorrow because I’m wondering if it could be IC. How is this diagnosed? They will probably suggest medication? I’m also suffering from a bout of depression and anxiety and this is certainly not helping. Feeling a bit overwhelmed at this time!:(

    • Reply

      Layla

      September 27, 2017

      An IC diagnosis is usually one of exclusion, i.e. when no infection can be found. However, testing methods are outdated and it has been shown that in many cases an infection is present although nothing had showed up in the culture. I wrote a blog post about this in the past. Are you in the US?

    • Reply

      Paula

      October 24, 2017

      I had pressure to pee on and off for 3 months and it wasnt constant. I would pee, and pressure would go away after an hour or so. Then I ate spicy food for dinner and I ended up at urgent care, achy, nauseaus, fevery, fatigued, no appetite, severe bladder pain, urgency on and off… I opted to not do the invasive test but have learned that my symptoms improve with no gluten and no irritating foods, still learning what those are. Its been 2 weeks, but sunday and monday were hood days, today I’m a little inflammed, one day at a time… I am thinking GAPS is best to start, when I’ve tried a couple AIP recipes, still have irritation.
      I am choosing to see the good in this, giving thanks to the Lord, knowing He WILL bring good out of this, and YES! Our bodies were created to be whole and healed, to heal itself, but we weren’t created to ingest GMO’s, chemicals, hormones, etc. Blessings and healing to each of you on your journey.

      • Reply

        Layla

        October 25, 2017

        The GAPS intro diet can be quite soothing so it’s certainly something to try if you had no success on AIP (I struggled with starches at the time, which are allowed on AIP). However, success is not always instant.

  • Reply

    Chrissy

    October 10, 2017

    Hi Layla,
    I’ve had a similar experience where experimenting with raw vegan and juicing caused me more pain and now I’m on the paleo gut healing band wagon. I’m just wondering if you made a point of eating cooked veggies instead of raw veggies once you went paleo? Also did you take any probiotic supplements or did you just eat fermented veggies and dairy for your probiotics?

    Do you still get any flare-ups now or do you think it’s possible to get the whole thing into complete remission?

    • Reply

      Layla

      October 10, 2017

      Interesting! Yes, I did – the GAPS protocol I was doing at the time really emphasized cooked veggies over raw as they are easier to digest and less abrasive to inflamed tissues…
      I did both fermented foods and probiotics but I have to say that some of the probiotics I tried caused me problems such as bloating and sometimes a weird burning sensation in my gut – not sure why! I overdid it a bit a the time as well, taking a couple of pills per day – probably not advisable.
      I never get bladder flares anymore, the last time I had one was after severe food poisoning but it cleared up pretty quickly. So yes, I would say it’s in complete remission and has been for about 3 years now.

      • Reply

        Chrissy

        October 11, 2017

        Hey Layla, Thanks for your reply. I actually worked with an integrative Dr for a while who put me on my current protocol which is basically paleo (I’ve added in the GAPS element with bone broth etc). When she works with patients she always starts them off on very small amounts of probiotics. I think that those of us with really leaky guts can’t handle the stronger probiotics when they pass through and irritate. I know I couldn’t have most probiotics without my bladder burning at first! She first started me on lactobaccilus only probiotics 3 x a day which were more gentle and then I slowly added 1/4, then half capsules of stronger strains like bifido bacterium as my body could handle them. So there you go!
        I’d say I’m now symptom free 85% of the time while I maintain good eating habits but working to achieve full remission! How long do you think you had to adhere to the diet before you reached remission?

        • Reply

          Layla

          October 11, 2017

          That is brilliant that you’re improving! Some probiotics are histamine forming which can be problematic in some people. It took me 6 months until the bladder pain eased and thena while longer until it fully stayed away.

  • Reply

    Lea

    October 11, 2017

    Hi! I’m currently following the paleo diet as well for a month now and eating more fermented foods like sauerkraut. However I was wondering if you think/did Kombucha? Or is that considered too alcoholic for us?
    Thanks!

    • Reply

      Layla

      October 11, 2017

      Hi, I did kombucha for a while and felt that it helped me a bit at the time. But later on it started giving me heartburn and a bit of a burning sensation so I stopped it. Theoretically, it could be a good way of getting good bacteria into the bladder, however it is also quite acidic and the alcohol may indeed be an issue. You’d have to try it for a week or so and see how it works for you personally.

  • Reply

    Krista

    October 15, 2017

    Hi Layla.
    Did you do the GAPS intro diet or the full diet or both? I started the GAPS intro diet last week and although I’ve had lots of detox symptoms my IC symptoms have improved.
    If you did the intro diet how long did you stay on that before moving to the full GAPS diet?
    And now that your IC is healed are you able to have acidic foods like coffee, kombucha or alcohol?

    Thank you so much for sharing your story and giving me hope.

    • Reply

      Layla

      October 15, 2017

      Hi Krista,
      Glad that your IC improved! I stayed on intro for nearly a year as I never did well on nuts or fruits and didn’t quite manage to move on. In hindsight, this was far too long because it’s quite a low carb/low calorie and low potassium diet – not really a good thing, especially for women. From my experience I’d try introducing root vegetables again as soon as you can rather than fruit (fruit seems to be a problem more often). I missed the point when I should’ve moved on and this wasn’t good for my metabolism and digestion. Some people might say you need to try harder if you’re starting to feel worse again but this might be a sign that you need to re-introduce some foods. This is different for everybody though, try to listen to your body.
      Acidic foods aren’t an issue for my bladder anymore luckily!

      • Reply

        Krista

        October 15, 2017

        Wow that’s amazing that you did it for a year! How long did you stay in each stage of the intro diet? Or how long would you recommend?
        I was hoping to move through the 5 stages over the coarse of 3 months and then move onto the full GAPS diet.
        Would love to hear your thoughts.

        • Reply

          Layla

          October 17, 2017

          I kind of never managed to move on from about Stage 2. I think it’s individual but I wouldn’t recommend staying on intro for more than 3 months, so your current plan sounds about right. I generally find the autoimmune paleo diet better designed and in hindsight would recommend it over GAPS – as I said I ran into some problems by being too restricted/low carb and generally the foods allowed on AIP are better tolerated than some of the foods re-introduced on GAPS (fruits and nuts versus root vegetables). This is something to bear in mind if you start getting worse and/or can’t move on to the next stages.

          • Krista

            October 17, 2017

            Thank you so much for your insight! I’m going to look into transition to AIP over the next couple months

  • Reply

    Diana

    October 24, 2017

    Hi Layla,

    I too have had IC symptoms for over 7 months after eliminating a calcium oxalate kidney stone (6mm bugger), but I have yet to eliminate the possibility of infection since I read that standard tests miss about 50% of infections, esp those with rare or fastidious organisms. I think part of the challenge with IC is that people labeled with this syndrome quite likely have a variety of different causative factors for their seemingly identical symptoms. I was wondering if you could share a bit more about your symptoms and if you ruled out the possibility of infection (by testing for mycoplasma/ureaplasma, by broth culture or the DNA testing available in the US).

    I have had digestive issues since my childhood but they got worse in my mid-30s and I have had frequency/urgency since my 20s although no “classic” infection symptoms (burning, fever, nausea). The frequency got much worse for me with the stone and the pain and burning settled in about a month after eliminating the stone. I am looking into the possibility of treating this with diet, and I came across GAPS and AIP as options. and I would appreciate some comments on your experience:

    1. When were you able to introduce fermented veggies and/or probiotics without flaring your bladder? Could I use probiotics rather than fermented veggies, which flare me, instead? Or is it better not to use anything? I think I flare from anything fermented (a spoon of yoghurt burned my bladder so I didn;t dare try anything more adventurous. In addition, I have tried the well-known therapeutic dose probiotic (with about 450 billion counts) before IC for my IBS-D (or SIBO or whatever gut issues I have) and I felt bloated beyond belief. I had to give up. This time I started slowly with Sacharomyces boulardi, which I seem to tolerate well (although not sure if it does anything), and two strains of lactobacilus that seemingly do not stimulate histamine. They did upset my bladder somewhat, but I can generally tolerate them.

    2. How do you keep stage one of the Intro Gaps diet with a regular job or even some travel? I can’t imagine carrying broth around. I already cook and carry all my food with me to work, but I never attempted liquids.

    3. How do you avoid getting hungry? And what do you snack on? I didn’t use to be a big snacker, but I had plenty of complex carbs (muesli, oats, brown rice, whole wheat) with my main meals and I’d indulge in an afternoon piece of chocolate (gone are the days, alas!) I feel that I’d go hungry (and bored to death) with only meat and veggie soups. Any tricks other than telling myself this is all so I can get better?

    4. What’s your view on combining meds and supplements with GAPS diet? In addition to probiotics, I take 1000mg of non-citrus quercetin a day, a vitamin D3 (I currently like in the UK so not much sun) and plan to add omega-3. As for meds, I have been on an antiacid for 3 years (I know it’s bad but it’s the only thing that helped my burning gut sensation when this happened years ago. Now I managed to reduce the dose to 12 mg, but can’t seem to be able to get off of it without my gut going into panic mode. When I do, I get stomach upset and the burning sensations.) I also take a 2mg dose of Cyclobenzaprine to help with sleep (it also calms my gut, and makes me think my problem is that food moves too fast through my gut), 300mg of Gabapentin for the bladder pain (just numbs it somewhat) and solifenacin for overactive bladder to help with frequency.

    Sorry for the many questions! I am a bit overwhelmed and not sure how to best approach this.

    • Reply

      Layla

      October 25, 2017

      Hi Diana,
      No, I never got tested and I didn’t know many of the things I know now back then. But my bladder symptoms improved anyways. I started with chronic UTIs, especially after intercourse, which often turned into kidney infections. Then after many courses of antibiotics the stinging pain and urgency just never went away again – I had to go often and usually very little came out, plus the stinging got worse whenever I ate sugar or starch. I also had a lot of bloating and belly aches – IBS.
      I think some kind of bacterial imbalance is probably always present with these issues, so restoring balance is important but can be done without testing if this isn’t available. To answer your other questions:
      1) This is often due to mast cells and histamine intolerance. High dose Vitamin C (buffered) may help bring this down. I never had much success with probiotics myself but I could tolerate probiotic foods. You can try a D-lactate free probiotic, soil based organisms or mutaflor (a beneficial e.coli strain). I’d recommend not overdoing dosages, testing one at a time and see how you feel. Prebiotics are generally better to help grow the good bugs but you may not tolerate them at this point.
      2) GAPS is hard when working/travelling. I used to take a thermos or mason jars if I had the chance to heat food up. Boiled eggs were also a staple.
      3) I didn’t feel hungry much when I was on GAPS but I’d certainly have that problem now. Generally eating less carbs should help keep blood sugar more stable so you get hungry less but it is hard to get enough calories on this diet. Reducing liquids and increasing veggies and meats may help or adding more good fats. Don’t stay on it for too long, just set yourself a time and then start introducing new foods.
      4) Regarding meds I cannot advice you for legal reasons, work with your doctor on this. The only thing I can say that antacids lower stomach acid, which is needed to digest protein (I will upload an article on this soon). The stomach lining may become thinner, so when you stop antacids it burns. Antacids are not supposed to be recommended long-term. Ideally you’d work with a practitioner to come out of this vicious cycle. Meds can be a clutch sometimes so I’d always talk to your doctor first. I am not a massive fan of oral Vitamin D as this can drive calcium too high, this would be better from vitamin D lamps or sunlight. For omega 3 you can eat 2-3 servings oily fish per week. Quercetin may help with the histamine issue.
      Hope that helps!

  • Reply

    Paula

    October 24, 2017

    BTW Layla, THANK YOU! for responding to every comment. It’s challenging when I read other blogs and I have the same questions but the writer doesnt always respond… I know life gets busy so grace there but just letting you know its appreciated.

  • Reply

    Diana

    October 27, 2017

    Thanks a lot, Layla! I’ll go see a naturopath my friends recommended. Maybe she can straighten me out. I hate taking the antacid.

  • Reply

    Julie

    November 4, 2017

    Hi Layla-
    Thank you so much for this post!
    I have only had a couple UTIs in my life but over the summer I started a birth control pill to try and help my endometriosis pain until I was able to get deep excision surgery by a specialist. 2 weeks into being on the pill I started to get UTI symptoms. I went to my gyn and he gave me Macrobid for 7 days even though my urine analysis was negative. Nothing cleared up and since then I’ve been to 2 Urologists who felt that it was the pill causing my hormones to not be balanced and therefore causing me this pain and constant need to urinate as well as the possibility that there was endo in my bladdder. I just had my excision surgery October 12 and 1 week post op I felt great and didn’t have that pressure feeling on my bladder or need to constantly urinate. Unfortunately I then started feeling cramps, lower back aches and that bladder pressure and constant need to pee was back. I was treated with Cipro for 3 days and another urine analysis was done – everything negative. Now I’m 3 weeks post op and also have been doing an anti-inflammatory diet since the day of my surgery but am finding no relief. Should I go forward with a cystoscopy? I’m so uncomfortable and I peeing all the time but it’s not just a little – it’s a “normal” pee. I don’t know how that’s even possible. My surgeon said to see a Urologist again but I really don’t want another procedure done however I’m feeling so desperate.

    • Reply

      Layla

      November 5, 2017

      Hi Julie, really sorry to hear you’re struggling. Unfortunately it’s not uncommon for symptoms to still remain after a cystoscopy – I can’t advice you on medical procedures as I’m not a doctor. The pill can change the pH in the uro-genital area, thus affecting the bacterial balance, plus it can deplete nutrients that are important for fighting off infections, such as Vitamin C. Antibiotics can also kill the ‘good’ bacteria and may worsen things (I have a post on this), plus there’s a theory that bactericidal Antibiotics (macrobid), which kill bacteria by rupturing their cell wall, could potentially damage our own cells in the bladder. If I was in your situation I would see a functional medicine doctor (if possible) or a ND for a second opinion. What anti-inflammatory diet did you do? I’d suggest trying a ‘paleo’ type of diet and look into beneficial bacteria (I have a post on this also) for the uro-genital area to help restore bacterial balance. Nutrients to look into would be vitamin C (has antimicrobial activity and our body needs it in high amounts during infections) and magnesium (magnesium relaxes muscles, so a deficiency can play a role in bladder pressure and back aches). BTW a negative urine culture does not mean there’s no infection, these are outdated. If you can, test with MicroGenDX labs (genetic testing for bacteria).

  • Reply

    Jamie Hamilton

    November 7, 2017

    Layla,

    I followed GAPS years ago for IBS. This year with an IC diagnosis and severe lasting pain I am revisiting GAPS for hopeful healing. Do you have a list of what you eat daily in your current paleo/GAPS diet? After the long intro phase…

    Thank you and happy healing

    • Reply

      Layla

      November 8, 2017

      Hi Jamie, I don’t think long-term GAPS intro is a good idea, use it as a short-term intervention – please see my newest post about my year on the GAPS diet and some problems it created. I am not following GAPS anymore but more of a paleo template: organic fruit and veg, grass-fed meats, fish, eggs, dried fruits, olive oil, coconut oil and butter, nuts, some fermented dairy, some legumes, sometimes rice, some white potatoes – I have trouble getting enough calories and therefore eat some foods that maybe aren’t ‘ideal’. I’d say vegetables are my staple and the rest are add-ons. I’ve gotten a bit lazy with the bone broth and fermented foods but still try to use them now and again. But you’ll have to figure out what works for you, just be aware that these restricted diets can be too low calorie and low-carb (especially for women) over the long term so if you’re feeling too fatigued and getting thyroid/hormonal issues, and/or sleep problems that’s a warning sign.

      • Reply

        Kierra S Stoker

        December 8, 2017

        I tried to make bone broth. Fail. Can u share how you got ur bone broth in and did it help?

        • Reply

          Layla

          December 9, 2017

          Here is the recipe I use (these days I like to use my Instant Pot as it’s much faster) http://bladder-help.com/262-2/ – I believe it did help me and I used to make soups or drink it straight. Now I mainly make sauces with it. It’ll still be beneficial, even if it doesn’t gel when cooled.

  • Reply

    Kierra S Stoker

    December 8, 2017

    Hello
    I have not been diagnosed with IC. But I have been diagnosed with chronic cystitits. Same thing to me. I have been in constant pain with maybe a hour or two a day without pain such as burning urgency and frequency. I am trying to have a better diet but it seems eeeeeverything makes my flares worse. I feel like I don’t even know where to begin since I feel like im always in a flare. Even water I feel like and I drink evian. I have also tried mountain spring. But I’m already always in such a flare and pain. Mainly mornings. After my bladder starts works the symptoms return. I don’t know what to do. I’m taking some time off to work out and deal stress and heal and diet and hoping this helps because two months of this I can’t take much more. If I’m eating thing and finding everything but steeled cut oatmeal makes me flare even organic juicing can I still heal? I ordered harvest best dried freeze aloe pills I’m taking a probiotic and a antibiotics at night. I want to be healthy again and get my life back. I feel so much grief

    • Reply

      Layla

      December 9, 2017

      Hi Kierra,
      I’m sorry you’re going through this. Unfortunately I can’t give you an answer about whether you can heal – I don’t know enough about your case, you will have to get down to what is the root cause for you personally. I’d recommend working with a functional medicine practitioner who can help guide you, maybe do some testing. Stress management is a big one. Maybe you can look in to herbs that form mucilage (such as slippery elm) that may help shield the bladder wall a bit from irritation. Chronic infection is a problem with immune defenses, so I’d personally look into boosting immunity.

  • Reply

    Elka

    December 16, 2017

    Dear Layla, it is always inspiring to find stories of healing from IC. I have had this illness for astonishing 17 years. It is a nightmare, and a progressing one. At this point in time, I struggle with any diet-restrictions. I would like to try the GAPS diet, and have on occasion for a day or two, but I find myself so tired when not eating some carbs! (I eat spelt and kamut bread and pasta made from the same grains, and sometimes I have oats too). Did you find yourself craving carbs when starting GAPS? Do the cravings go away with time? Did you eat potatoes at all?
    Also, can you give me your recipe for the bone broth? Do I really have to boil meat for a whole day?? (Am concerned about the gas bill at this rate!)

    • Reply

      Layla

      December 17, 2017

      Hi Elka, I didn’t struggle with cravings very much as I’m generally not too susceptible to them, however I did suffer from very low energy and in hindsight I don’t think forcing myself to stick to low carb was healthy. Cravings do get less over time though. I couldn’t tolerate any grains or potatoes at the time at all.
      I think you need to listen to your body, try and distinguish between ‘addictive’ sugar craving and true need for ‘fuel’. In hindsight I know much more about it and going too low carb is not great for women. I would consider the AIP diet over GAPS but with the added bone broth (if you generally do okay on carbohydrates, if not find one that works for you). Try balancing all meals to have some protein, carbs and fats.The bone broth recipe is on my blog. Chicken broth requires shorter cooking times (4-6 hours) – I usually use my slow cooker, I don’t think it uses too much power. You could also use a pressure cooker and only cook it for around 1 hour.

  • Reply

    JSJ

    February 6, 2018

    HELLO ALL,

    My first IC event occurred for me over Thanksgiving 11/26/17, I am 44. I ended up in urgent care 3 weekends in a row, I was finally told Cystitis. I started reading and have not stopped.

    I am now 47 days into the Gaps Diet. It is working!!!!! My bladder is still healing, but I feel certain I will heal. Healing this condition varies depending on how long you have been sick. I think for me a 1 to 2 years before I am totally healed. I stopped all meds 5 days into GAPS, this is now day 47 no meds and I have my life back.

    Must Do’s
    Pelvic Floor Stretches – they work
    Detox – think self care products, like tooth paste and makeup
    Warm Baths in Baking Soda – Works & is a Detox
    BLADDER TRAINING is a also a BIG part one the puzzle on the Road to Healing.

    Here are MUST READ’s – read these books and make the life changes you will get your life BACK!
    Gaps book by Dr. Natasha Campbell-McBride MD
    The Interstitial Cystitis Survival Guide, Robert M. Moldwin MD – Great info to help you understand IC
    The Interstitial Cystitis Solution, & Jesse Cozen – Learn about Med’s, Treatments, and pelvic floor exercises
    The Art of Control, be Leslie M. Parker, PT – Bladder Training is a must to heal!!!!!!

  • Reply

    JSJ

    February 6, 2018

    Hello All Again,

    I also got tested for FOOD Intolerance’s – Food Intolerance’s cause inflammation in the body. Now that I am healing I realized that for years my Digestive track was not well POOR Digestion IBS – which is Leaky GUT, the Gaps Solution heals your GUT when Your Gut heals the body heals and you bladder with it. The Leaky Gut is what is causing the inflammation. The Mocus lining will return to your Bladder and Intestine, the good Flora will return to normal and the Bad Flora will die off and balance returns to the Digestive Track. In a Nut Shel – sounds basic and simple right, it is………….Think about it.

    Marshmallow Root get some, tea or pills this is a miracle worker for IC
    Pre-Relief Works great too

  • Reply

    JSJ

    February 6, 2018

    JSJ Here:

    Most of this with IC is Self Care. On GAPS I had no Cravings and Energy. The 1st couple of weeks poor appetite.
    NO SUGAR, HONEY, STEVIA etc!!!
    NO CARBS!!!

    Sugar and Carbs FEED the bad Bacteria that is causing the inflammation. I did week 1 for 2 weeks. And if I feel I need too I go back to stage 1 for a 2 or 3 days as I progress to the next stages I do. BONE BROTH is what heals the GUT. The Fat and Gelatin heal and seal the bladder and Intestine.

    My Mother who is 73 has Diabetes she joined me on Gaps, her A1C went from 6.7 to 6.2 in 11 days and her Dr. told her she could stop all her Metformin meds, she was talking 1500 milligrams a day. She also stopped her Antacid Meds. She had been taking Metformin and Antacids for 20 years.

    Heal your Leaky GUT and you will heal. All Diseases Begin the GUT.

    God Bless and Good Healing

  • Reply

    JSJ

    February 6, 2018

    1 more thing get a Gaps Cook Book or two from Amazon to help you follow the stages and recipes. Being able to know what to eat and how to cook it is necessary. NOTE Gaps is a commitment, a year to 2 years for healing. I plan to do the Intro stage “Week 1” once a year for life, Just to keep my health and digestive health. You are suppose to progress through each stage every 5 days. But staying on a stage longer or going back is fine. You progress when you feel ready and your symptoms clear up – then you know you are ready. I am currently still on stage 4. I am planing to get to full Gaps in March, I progress as my symptoms tell me.

  • Reply

    SH

    March 13, 2018

    Hi Layla

    I am 46 and have been feeling unwell for over 15 years with bladder inflammation and had to gave up on having a relationship.
    Recently I have seen Professor Khullar who is a well renowned and very pleasant . He has put me on a histamine liberator free diet to calm the mast cells -which is very restrictive.I have now done this for 4 weeks,.I can’t notice any difference except I now have headaches- maybe from the quercitin.

    He has given me anti biotics ciprofloxacin and amoxicillin to take if this diet fails -( because the urine sample he sent to a lab tests within an hour and slow grows to find low lying infections recorded strep and another bacteria).. I have always avoided anti bionics-so have only had 2 times over the last 15 yrs.
    I have full bladder control but have now flare up and the bladder wall is coming away in large clumps…..,
    1. Do you think bicarbonate of soda can be detrimental as it is the only thing that helps?
    2.I sort of want to try anti biotics- he said some patients recover after a dose which sounds so tempting.HoweverI can hold off as I have done on numerous occasions and wait till it eventually calms down.
    2.I will try another diet and find it easy to stick to anything as I’m not a foodie…but have been a vegetarian for 35 years so really can’t imagine eating meat – what diet do you suggest I do? which book should I follow?!

    Any suggestions would be really appreciated

  • Reply

    SH

    March 13, 2018

    Hi Layla

    I am 46 and have been feeling unwell for over 15 years with bladder inflammation and had to gave up on having a relationship.
    Recently I have seen Professor Khullar who is a well renowned and very pleasant . He has put me on a histamine liberator free diet to calm the mast cells -which is very restrictive.I have now done this for 4 weeks,.I can’t notice any difference except I now have headaches- maybe from the quercitin.

    He has given me anti biotics ciprofloxacin and amoxicillin to take if this diet fails -( because the urine sample he sent to a lab tests within an hour and slow grows to find low lying infections recorded strep and another bacteria).. I have always avoided anti bionics-so have only had 2 times over the last 15 yrs.
    I have full bladder control but have now flare up and the bladder wall is coming away in large clumps…..,
    1. Do you think bicarbonate of soda can be detrimental as it is the only thing that helps?
    2.I sort of want to try anti biotics- he said some patients recover after a dose which sounds so tempting.HoweverI can hold off as I have done on numerous occasions and wait till it eventually calms down.
    2.I will try another diet and find it easy to stick to anything as I’m not a foodie…but have been a vegetarian for 35 years so really can’t imagine eating meat – what diet do you suggest I do? which book should I follow?!

    Any suggestions would be really appreciated

    • Reply

      Layla

      March 17, 2018

      I’m sorry you’ve been suffering for this long 🙁 To answer your questions:
      1. No, I don’t think this is detrimental – I couldn’t find much science on this, however I think it only deals with the symptoms, not the underlying cause. Pathogens like a more alkaline urine however, so I’m not sure if in the long term the bicarb could help create a more favorable environment.
      2. Prof Malone-Lee, an expert here in the UK, believes that high-dose longer-term antibiotics are the only way to eradicate chronic infections, so you may want to ask your doc about this (also, bear in mind that the FDA has issued a warning for the type of antibiotics that cipro belongs to). If you decide to go for antibiotics, you could supplement with beneficial bacteria to help reduce adverse effects on the microbiome.
      3. Find a diet that works for you and that fits into your life. The most important foods to avoid are inflammatory foods – processed sugars and grains, vegetable oils and additives. I really benefited from cutting out gluten. I used to be a vegetarian too, so I can understand this. You could see if you can eat fish, maybe? Eggs are great if you tolerate them. Bone broth is also a good option.

  • Reply

    JSJ

    March 17, 2018

    Dear SH,

    Start the Gaps DIET!!!!!! Take Benadryl for the histamine in the mast cells, Slippery Elm is a Miracle for the bladder it coats and protects the Bladder, take it with Marshmallow Root. Take Vitamin E, Fish Oil and Turmeric pills.
    When your bladder is stronger, in about 2 months if you follow Gaps, start taking Aloe Vera, L-Glutamine. Both of these put back the GAG lining in the bladder. Cheyenne capsules speed up the healing in the Bladder. NO JOKE!

    Also you must DETOX
    You Must do Pelvic Floors Exercise – NO Kegal exercises this causes the bladder to spasm.

    Keep reading and researching – do not STOP!
    Start reading about Herbal Antibiotics like Oil of Oregano, Olive Leaf and Berberine.

    We who do self care – heal through diet and supplements.

    Forgive me but your vegetarian diet is hurting you right now. You need BONE Broth and Gelatin. Both of these work like speckle on the digestive track. You have Leaky Gut and Bacteria OverGrowth which causes and Auto immune response on the body, this is what effects the bladder. All disease begins in the GUT. The bladder is the canary in the Coal Mine.

    If we have IC we are in Adrenal Fatigue as well, diet and adrenal support for a YEAR will heal you as it is healing ME!
    Find Adrenal support with no Vit-B.

    God Bless…..and God Speed to heal. I know how you feel! I am no meds for 3 months and no Dr. helped me. I did this by research, reading, diet and supplements. You can too. I followed blogs and read.

  • Reply

    Cara

    May 11, 2018

    Hi there! Thank you so much for postinf all of this. I’ve been trying to heal my bladder for 9 months in addition to having IBS/SIBO/CANDIDA insanity for the better part of 7 years. My gut wad so close to being healed until a major emotional loss this year. I get so close to healing the bladder, with symptoms improving, but then if I get scared or stressed it sets me off hardcore and Im back where I started. my question is mainly about bone broth. I tried it awhile ago but it gave me a horrific metallic taste in my mouth and then once it hit my bladder it singed and burned so painfully. Any idea as to what that’s about? Ive also found the metallic taste with my most recent flare. It’s so weird to experience it. I feel so overwhelmed.

    I’m in horrific withdrawal from antidepressants that were hurting me, and I’ve heard that they can really warp your system on the way out, even tapering over two years, like I did. Is this a systemic detox reaction?

    Thanks,
    Cara

    • Reply

      Layla

      May 11, 2018

      Metallic taste in mouth can be associated with a few things. With regards to medication an article from Cleveland clinic states: ‘Prescription drugs – These medicines include antibiotics such as tetracycline; the gout medicine allopurinol; lithium, which is used to treat certain psychiatric conditions; and some cardiac medications. Your body absorbs the medicine and it comes out in the saliva. Also, medicines that can cause a dry mouth, such as antidepressants, can be a culprit. These can affect your taste because they close your taste buds.’
      Apart from that it can be associated with too high amounts of certain minerals, for example copper and heavy metals. It has been found that bone broth from animals that had been exposed to heavy metals also contained heavy metals like lead. I would stop consuming the bone broth or try using bones from only grass-fed, organic animals and see if this has the same effect. If the taste persists I would also recommend seeing your doctor about it.

  • Reply

    Erica Rohrer

    June 11, 2018

    I’m having almost the exact same experience as “Mary” did, one of the other commenters, except I was on 5 rounds of antibiotics (macrobid and keflex were 2 of the 5). I am seeing a urologist who has diagnosed me with overactive bladder. She prescribed me Detrol with no relief. I’m on oxybutynin now and starting to get some relief. I have absolutely no burning, no pain, no incontinance, no leaking. JUST The urge to go about every 20 mins with the pressure as well. I’m just not convinced I have overactive bladder. I’m 35 and I only had one UTI in my life prior to this one that I’m referring to. The medicine (in my opinion) is putting a band-aid over the symptom, not getting to the “root” of the problem. Any suggestions for me?? I take a daily vitamin, pre and pro biotics. I’ve cut out alcohol and coffee, and I mainly drink water (never drink soda). Thanks for any guidance!

    • Reply

      Layla

      June 11, 2018

      Hi Erica,
      Studies have shown that people with overactive bladder tend to have an imbalance of the microbes living in the bladder. Have you had urine testing done?
      I have also found that clients with overactive bladder can have imbalances in the gut as well. Food intolerances could be another thing to look into. You already seem to be on a good path, you may wanna experiment with the foods you eat.

  • Reply

    Erica Rohrer

    June 11, 2018

    I’ve only had the urinalysis done at the beginning of each appt at the urologist. I keep all the results but am unsure of what all of them mean. My urologist tells me the results look great when she reviews them. Is urine testing something different?

    Will the pre and probiotics help the imbalance in my gut, or is there something else I should try?

    I will do some experimentation with foods.

    Thanks again!

    • Reply

      Layla

      June 11, 2018

      An urinalysis is what I meant by testing – they look for bacteria in the urine. However, gold standard urinalysis testing unfortunately misses a lot of low-level or mixed infections (you can read about it here: http://bladder-help.com/current-testing-utis-fails-patients/). There are newer testing methods that may be more accurate, but tbh they are expensive and with most of my clients I do gut testing instead as the gut has such a big impact on the whole body. pre- and probiotics may help, but it is somewhat individual which types. I think diet is a big one, I like to consider diet from an evolutionary perspective (i.e. what have humans eaten throughout evolution) and use that as a template. Many people probably feel better when they cut out processed foods and sugar, maybe even things like gluten and dairy.

  • Reply

    JSJ

    June 11, 2018

    Hello Erica:

    I started the Gaps Diet for my IC Dec. 25th 2017. Within 5 days I stopped taking prednisone. I am now symptom free. I have stayed on Gaps.

    I have been supplementing with Slippery Elm & Marshmallow Root, L- Glutamine, Olive leaf, Aloe Vera, Primrose Oil, adrenal support, that contains no Vitamin B. Vitamin D, Cod Liver Oil.

    I have done tones of reading. When we have IC we have adrenal fatigue also. Often we have more than one autoimmune condition. My thyroid went slow in 2014. Doctors do not tell you that slow thyroid in 90% of people is Hashimoto’s. I guessed I had Hashimoto’s, based on all my reading. I guessed correct. I just saw my Endo, this month. I have Hashimoto’s. This means my autoimmune condition started in 2014. Autoimmune conditions cascade from one to another.

    Are you Hypo-Thyroid???

    I am now working to heal my Hashimoto’s. Autoimmune conditions are whole body. Diet and supplements will help you. READ – READ – READ!!!!!!

    Gaps heals leaky GUT
    Bladder Training is Key – when you bladder clams down after a few weeks on GAPS.
    Supplements
    Pelvic Floor Stretching

    Expect to be healing with diet and supplements for the next 2 years. I am – you can too.

  • Reply

    Erica Rohrer

    June 11, 2018

    Hi JSJ,
    Thanks for your response to my post. As far as I know, I don’t have IC, so are you recommending I try the GAPS diet for my overactive bladder? I am not hypo-thyroid, and I don’t have any other autoimmune diseases. Prior to my UTI on March 1 of this year, I was perfectly healthy with only one UTI previously. I haven’t had any of the risk factors I’ve read about that would lead to either overactive bladder OR IC. The only thing I can think of is that my bladder bacteria is out of whack due to all the antibiotics I was on. So I’m definitely at a loss. I’m going to experiment with foods and keep taking my pre and probiotics plus the meds my urologist gave me…

  • Reply

    Cassie

    June 24, 2018

    Hi Layla,

    I’m so happy I found this page. I am going to try what you used for yourself. If possible, can you please read my backstory to getting IC, it is very similar to yours, and lend me any insight/advice particular to it?

    My problems all started when I got a UTI in February of this year (not my first UTI) which was caused by E. Coli bacteria. I was given Macrobid to take for a week. After a week I still had mild but persistent symptoms. Another test was done which showed there was no significant bacterial growth. I was still given a week of Cipro, which continued to do nothing and then a week’s worse of Keflex, which again did nothing.

    I saw a urologist who, without physical examination, believed I was experiencing bladder inflammation from a bad UTI and that it would eventually go away. It did go away but the same symptoms reappeared at the beginning of June.

    I got another urianalysis done which shows no significant growth of bacteria. I had a cystoscopy done that showed that my bladder looked perfectly normal. My urologist prescribed me Myrebetriq to take once daily, however after taking it for two weeks I stopped because not only did I not notice any improvement, I felt worse.

    I’m not happy with my urologist’s services. It is incredibly difficult to get an appointment with him and when I am able to reach his office it takes at least 1-2 months to get an appointment. I am in so much pain every single day and my mental health has been suffering as well. My life has become incredibly miserable dealing with this condition. My urologist mentioned I might have IC but he didn’t formally diagnose me.

    Thank you for your time.

    • Reply

      Layla

      June 25, 2018

      Hi Cassie,
      This kind of worsening after having been on antibiotics could be due to the antibiotics having disrupted the microbiome (community of microbes living in the body) as they are not targeted to bad bacteria but also kill good bacteria. How is your gut?
      There is a chance that UTIs can stay hidden in the bladder as current testing methods can miss infections, especially if they have buried deeper into the body.
      So my approach is to try and re-establish balance of bacteria.

  • Reply

    JSJ

    June 25, 2018

    Hi Cassie,

    I got my IC symptoms Oct. 27th 2017. For the next 4 to 4 weeks of my life was HELL on Earth. If I listened to my Doctors I would have rather died.

    I started the GAPS Diet Dec, 25th 2017 best Christmas Gift I ever gave myself. In 1 weeks I was off my medication. I am still on GAPS. I am symptom free.

    After much reading I learned that when we have IC we have Adrenal Fatigue. I guessed I have Hashimoto’s. After a trip to the Endocrinologist I knew I was right. My Auto-Immunmie Condition started with my Thyroid in 2014. I am now healing my Hashimoto’s

    Food is Medicine, Take you life back. Start GAPS, buy cooks books to use with GAPS Diet book to make starting simple and easy.

    Best Probiotic’s are:
    Gut Shot
    White Mountain Yogurt

    Supplemnets to BUY:
    L-Glutime
    Aloe
    Marshmallow Root
    Slippery Elm

    I did week 1 of gaps for 3 weeks
    I did week 2 for 3 weeks
    I did week 3 for 4 weeks
    You progress as your body tells you it its healing.

    You can Heal……

  • Reply

    Sophie

    September 16, 2018

    Hi Layla
    This is a great website and your story is inspiring…thank you.
    I have an embedded UTI / IC that I have been trying to heal since March. I’m doing all the healthy eating etc and hopefully things are slowly getting better. I wanted to ask you about exercise. This is very difficult for me, it always seems to flare my bladder and afterwards I pee out my lining a bit and it’s then sore. I’m talking pretty basic exercise, I would not dare go running or cycling…yet. Did you have to hold off from exercise while you were healing? I often have a few good days then get confident and do some more exercise and then it all goes south again. Very frustrating.
    Any advice welcome. Thank you so much.
    Sophie

    • Reply

      Layla

      September 17, 2018

      Remember that exercise is also stress for the body, mostly good stress but stress nevertheless. Your body may need all the energy it has to deal with what’s going on, so maybe exercise is not for you atm. I would try gentle exercise like yoga, Tai chi or walking. I wouldn’t recommend running or cycling at all until you’re better as they put strain on the bladder/cause friction in the crotch area.
      I was too fatigued at the time to do much exercise but tried yoga and went for walks. Listen to your body and don’t stress if you’re not able to exercise much atm.

  • Reply

    Amanda

    September 28, 2018

    Hi there,
    I am new to the IC community. Life was pretty normal only 6 weeks ago. Throughout my life I have struggled with bowel issues and UTIs just here and there. I turned 30 in August and my first ER visit was on 8/18. Since then I have had 3 ER visits, 5 doctors and told 4 different diagnoses. My gyno first said endometriosis, the gastro said IBS. Another gyno did an ultrasound and stated she saw fluid and thought it was a ruptured cyst and now the diagnosis of IC. The urologist I went to sat down with me for only 15 minutes, his first time ever seeing me and diagnosed me. He prescribed me 50 mg of amitriptyline and said take this every night and gave me a diet sheet to abide by.
    This has been the most horrendous time in my life. Not only am I confused but my boyfriend and family are just as scared as I am. I was in denial at first, which I’m sure most woman in the IC community are. But as time goes on, I’m positive it’s the right diagnosis.
    I have been taking the amitriptyline ever day for about a week and it seems to help but I don’t know if it’s good to take or not. I’m positive I don’t have endometriosis but my gyno put me on lo lol estrin fe birth control and said to take it because eventually I won’t get periods, and that is supposed to be a god thing because IC sometimes flares worse during ones cycle. I have an appointment Monday with another urologist to see what they say. I have been sticking to the “ IC diet” but quickly realizing upon the research that I read that everyone is different. Your blog has given me something to smile about and look forward to. I’m hoping that if I can be proactive early on I too can beat this.
    I have a few questions I was hoping you could answer .
    Is it ok to be on birth control and take The amitriptyline ?
    When you had flare ups did you ever buy baking soda and water and did it help?
    I am taking a probiotic and it says 2 a day, would you recommend not taking that for right now ?
    Also though this is personal, is there any hopes of Intimacy with my boyfriend ? We’ve been together a little over 2 years and love together , and though he isn’t saying it and has been wonderful I know this has taken a toll on him.
    Will taking the medicine ( birth control and amitriptyline) interfer with my healing process once I start the GAPS diet ?
    Last question( I promise 😉) any suggestions for the “ IC belly”? I feel like I’m always bloated and uncomfortable.
    I’m currently taking the birth control, amitriptyline, probiotics and aloe Vera as well as mushroom root pills.
    Thank you so much for your help, I can honestly say your blog is the only thing I’ve read in 6 weeks that makes sense and gives me hope !
    – Amanda

    • Reply

      Layla

      September 28, 2018

      Hi Amanda,
      I’m sorry you’re going through this! And I’m glad you’ve found some useful info on my blog!
      To answer your questions:
      1) I cannot make any recommendations about your medication, ideally you need to work on those with your doctor. What I can say though is that for now I don’t think they will interfere with other things you do – but there is a chance that your circumstances change so that you can lower your medication. amitriptyline is for pain management. I came off hormonal birth control when my symptoms started but some people do feel better on the pill. You’ll have to see what works for you personally.
      2) I didn’t take the bicarbonate myself but I had a client who got instant relief using it.
      3) with the probiotics I would suggest you see how you feel taking them?
      4) intimacy is a tough one – I have a guest post from a lady who specializes in this topic, have a look: http://bladder-help.com/sex-and-relationships-with-interstitial-cystitis/
      5) bloating can have different reasons – for example poor digestive chemistry or an imbalanced gut flora. I can’t say without working closer with you what the reason is but you can try to support both and see what makes a difference.
      Hope this helps!
      All the best to you

  • Reply

    Amanda

    September 28, 2018

    Layla ,
    I have been diagnosed in the last 6 weeks when my symptoms started and my doctor prescribed Amitriptyline as well as birth control because she said symptoms can get worse when the menstral cycle begins. The birth co from she has me on eventually will give me little to no period. Were you in any medication ? Should I be discontinuing the amitriptyline and birth control ? I am looking to start the GAPS diet this weekend.
    Thank you for all your help !
    Amanda

  • Reply

    Amanda

    September 28, 2018

    Layla,
    Is it ok to take Amtriptyline and birth control while doing th GAPS diet. I was diagnosed 6 weeks ago and they gave me both of these medicines.

  • Reply

    Susan McIntyre

    October 22, 2018

    Hello,

    I can’t remember if I already contacted you, but this unsuspected and underdiagnosed airborne infection gave me symptoms of Fibromyalgia and I believe it can cause interstitial cystitis for the reasons mentioned in one of the paragraphs below. It can cause encephalitis and myelitis, so can it cause myalgic encephalomyelitis? Would this explain why ME/CFS typically begins suddenly after a flu-like infection, since this mimics the flu? Would this explain why ‘atypical’ ME/CFS is associated with seizure disorders, multiple sclerosis-like demyelinating disorders, Gulf War Illness, and a range of cancers at rates much higher than seen in the general population.

    It gave me symptoms of MS, and it’s known to cause sclerosis and to infect the CNS. This type of microorganism is in the same clade as animals (mammals) and shares the same/similar molecules as in the human body, like the myelin sheath, so perhaps the immune system becomes “confused” and attacks itself while fighting the pathogen? It’s known to cause and/or gave me seizures, abdominal aura, migraines, benign paroxysmal positional vertigo, delusions, hallucinations, wild mood swings, hydrocephalus, etc. And isn’t tinnitus, a hallmark of this infection, often comorbid with mental/mood disorders?

    Some online documents state this cancer-causing, mental illness-inducing common airborne pathogen that can cause so many idiopathic (unknown cause) diseases/conditions/symptoms is not zoonotic. That’s wrong! It’s carried by bats and shed in their feces. Bats evolved to deal with the photophobia and tinnitus it causes by hunting at night by echolocation.

    My coworkers and I, all immunocompetent, got Disseminated Histoplasmosis from roosting bats (Mexican Free-tail in our case) that shed the fungus in their feces. The doctors said we couldn’t possibly have it, since we all had intact immune systems. The doctors were wrong. And we did not develop immunity over time. We’d get better and then progressively worse periodically and concurrently with similar various symptoms.

    This common yet strangely overlooked infectious disease mimics colds, pneumonia, and the flu and can cause hematological malignancies, precancerous conditions, rheumatological diseases, connective tissue diseases, heart disease, autoimmune symptoms, inflammation, adrenal insufficiency, seizures, migraines, hydrocephalus, hallucinations, etc., etc. etc. and is often undiagnosed/misdiagnosed in immunocompetent people. It’s apparently never diagnosed/correctly diagnosed by doctors, mostly due to misinformation. It appears much information has been lost between the 1970s and 1990s about this pathogen known to cause so many diseases of unknown cause.

    More than 100 outbreaks have occurred in the U.S. since 1938, and those are just the ones that were figured out, since people go to different doctors. One outbreak was over 100,000 victims in Indianapolis. 80-90+% of people in some areas have been infected, and it can lay dormant for up to 40 years in the lungs and/or adrenals.

    It’s known to cause hematological malignancies, and some doctors claim their leukemia patients go into remission when given antifungal. My friend in another state who died from lupus lived across the street from a bat colony. An acquaintance with alopecia universalis and whose mother had degenerative brain disorder has bat houses on their property.

    Researchers claim the subacute type is more common than believed and that many children in California have the subacute form. It’s known to at least “mimic” autoimmune diseases and cancer and known to give false-positives in PET scans. But no one diagnosed with an autoimmune disease or cancer is screened for it. In fact, at least one NIH paper states explicitly that all patients diagnosed with sarcoidosis be tested for it, but to my knowledge most, if not all, are not. Other doctors are claiming sarcoidosis IS disseminated histoplasmosis.

    Many diseases it might cause are comorbid with other diseases it might cause, for example depression/anxiety/MS linked to Crohn’s. (It’s known to “mimic” inflammatory bowel disease.)

    This pathogen parasitizes the reticuloendothelial system/invades macrophages, can infect and affect the lymphatic system and all tissues/organs, causes inflammation, granulomas, and idiopathic diseases and conditions, including myelitis, myositis, vasculitis, panniculitis, dysplasia, hyperplasia, hypervascularization, calcifications, sclerosis, fibrosis, necrosis, eosinophilia, leukopenia, anemia, neutrophilia, pancytopenia, thrombocytopenia, hypoglycemia, cysts, abscesses, polyps, stenosis, perforations, GI problems, hepatitis, focal neurologic deficits, etc.

    I suspect the “side effects” of Haldol (leukopenia and MS symptoms) might not always be side effects but just more symptoms of Disseminated Histoplasmosis, since it causes leukopenia and MS symptoms. What about tinnitus, photophobia, psychosis “caused” by Cipro? Hypersexuality and leukemia “caused” by Abilify? Humira linked to lymphoma, leukemia and melanoma in children?

    What if this infection that made us so ill isn’t rare in immunocompetent people? What if just the diagnosis is rare, since most doctors ignore it? I mean, we couldn’t possibly have been the only people in the world suffering from Disseminated Histoplasmosis undiagnosed/misdiagnosed by doctors.

    Older documents state people who spend time around bats/in caves are known to get Disseminated Histoplasmosis, but the info appears to have been lost, for the most part. And now it’s illegal in England to block a bat’s access to their roost, resulting in things like bat feces falling into wine as it’s being blessed in churches. Bat guano is spread all over fields, and bats are used as “natural” pest control for crops. People buy bat houses for their properties at Lowe’s and Home Depot (because bats and honeybees, unlike humans, are assured a home by the government. But I digress…), people wander through caves for fun, and bat conservationists encourage people to leave bats in buildings/homes. What a terrible mistake those “experts” have made.

    The fungus is an Onygenale, and don’t they consume collagen/keratin? It’s known to cause connective tissue diseases (like scleroderma and/or myxomatous degeneration?), rheumatological conditions, seizures, and mental illness. Fungal hyphae carry an electrical charge and align under a current. It causes RNA/DNA damage. It’s known to cause delusions, wild mood swings (pseudobulbar affect?), and hallucinations. It’s most potent in female lactating bats, because the fungus likes sugar (lactose) and nitrogen (amino acids, protein, neurotransmitters?), releasing lactase and proteinases to obtain them. What about female lactating humans…postpartum psychosis? (And don’t some of those poor women also have trouble swallowing?) The bats give birth late spring/summer, and I noticed suicide rates spike in late spring/early summer. It’s known to cause retinal detachment, and retinal detachments are known to peak around June-July/in hot weather. A map of mental distress and some diseases appear to almost perfectly overlay a map of Histoplasmosis. Cancer is known to occur more often near rivers than in mountains or deserts, just like this infection. Johns Hopkins linked autism to an immune response in the womb. Alzheimer’s was linked to hypoglycemia, which can be caused by chronic CNS histoplasmosis.

    The bats eat moths, which are attracted to blue and white city lights that simulate the moon the moths use to navigate. Bats feed up to 500 feet in the air and up to six miles away in any direction from their roost, but not when it’s raining or when the temperature is less than approximately 56° F. The fungus can grow in bird/chicken feces, but birds don’t carry it because their body temperature is too high, killing the fungus.

    From my experience, I learned that no doctor, at least in DFW, will suspect subacute and/or progressive disseminated histoplasmosis in immunocompetent people. Some doctors, at least the ones I went to, will actually refuse to test for it, even when told someone and their coworkers have all the symptoms and spend a lot of time in a building with bats in the ceiling. Victims will be accused of hypochondriasis. (My doctors told me only farmers or AIDS patients get it, it’s only in bird feces, and it always infects the lungs…wrong, wrong, and wrong!) In fact, the first doctor to diagnose me was a pulmonologist, and the only reason he examined me was to try to prove that I didn’t have it, when I really did. No doctor I went to realized bats carry the fungus. And NO doctor I went to in DFW, even infectious disease “experts,” understand the DISSEMINATED form, just the pulmonary form, and the only test that will be done by many doctors before they diagnose people as NOT having it is an X-ray, even though at least 40-70% of victims will have no sign of it on a lung X-ray. It often gives false-negatives in lab tests (some people are correctly diagnosed only during an autopsy, if then, after obtaining negative test results) and cultures may not show growth until after 6-12 weeks of incubation (but some labs report results after only a couple of weeks).

    One disease of unknown cause that could be caused by Disseminated Histoplasmosis: I suspect, based on my and my coworker’s symptoms (during our “rare” infectious disease outbreak) and my research, that interstitial cystitis and its comorbid conditions can be caused by disseminated histoplasmosis, which causes inflammation and is not as rare as believed. I read that “interstitial cystitis (IC) is a chronic inflammatory condition of the submucosal and muscular layers of the bladder, and the cause is currently unknown. Some people with IC have been diagnosed with other conditions such as irritable bowel syndrome (IBS), fibromyalgia, chronic fatigue syndrome, allergies, and Sjogren’s syndrome, which raises the possibility that interstitial cystitis may be caused by mechanisms that cause these other conditions. In addition, men with IC are frequently diagnosed as having chronic nonbacterial prostatitis (the pathogen likes zinc, and doesn’t the prostate have a lot of zinc?), and there is an extensive overlap of symptoms and treatment between the two conditions, leading researchers to posit that the conditions may share the same etiology and pathology.” Does that sound like Disseminated Histoplasmosis to you?

    My coworkers and I were always most ill around May, presumably since the Mexican Free-tail bats gave birth in Texas during May (and the fungus was most potent), relapsing late fall/Thanksgiving to December, for some unknown reason (maybe migrating bats from the north?). We had GI problems, liver problems, weird rashes (erythema nodosum, erythema multiforme, erythema marginatum/annulare, etc.), plantar fasciitis, etc., and I had swollen lymph nodes, hives, lesions, abdominal aura, and started getting migraines and plantar fasciitis in the building, and I haven’t had them since I left. It gave me temporary fecal incontinence, seizures, dark blood from my intestines, tinnitus, nystagmus, excessive yawning, inability to raise my arms at my shoulders, blurry vision/floaters/flashes of light, benign paroxysmal positional vertigo, isolated diastolic hypertension, gallstones, elevated liver enzymes, what felt like burning skin, various aches and pains (some felt like pin pricks and pinches), tingling, tremors, restless genital syndrome, “explosions” like fireworks in my head while sleeping, and temporary blindness. Suddenly I was allergic to Comice pears, my lower lip swelling from the juice (latex fruit allergy or oral allergy syndrome?). I had insomnia (presumably from the fungus acidifying the blood, releasing adrenaline) and parasomnias. It felt like strong bursts of electrical shocks or strong steady electrical currents in my body, which now feel like low electrical currents at times, only at night. I was always worse at night. (Because bats are feeding? Or maybe because fungus follows a circadian rhythm?).

    I suddenly had symptoms of several inflammatory/autoimmune diseases, including Fibromyalgia, Sarcoidosis, ALS, MS, Sjogren’s syndrome, etc. that have disappeared since leaving the area and taking nothing but Itraconazole antifungal. No one, including doctors (we all went to different ones), could figure out what was wrong with us, and I was being killed by my doctor, who gave me progressively higher and higher doses of Prednisone (1-2 years after I already had Disseminated Histoplasmosis) after a positive ANA titer, until I miraculously remembered that a visiting man once told my elementary school class that bats CARRY histoplasmosis. There’s a lot more. I wrote a book about my experience with Disseminated Histoplasmosis called “Batsh#t Crazy,” (now you know where that term, “bats in the attic/belfry,” and “going batty” came from) because bats shed the fungus in their feces and it causes delusions and hallucinations, I suspect by the sclerotia fungal mycelia can form emitting hallucinogens (like psilocybin and dimethyltryptamine) along with inflammation in the CNS. (Schizophrenics have 2X of a chemical associated with yeast, part of the fungal life cycle.)

    Thank you for your time,

    Susan McIntyre

    P.S. Doesn’t this infection share all the same symptoms with Gulf War Syndrome?

    • Reply

      Layla

      October 30, 2018

      Hi Susan, thanks for sharing this, it’s very interesting and I have never heard of it. Would a regular test for fungal infection pick this up? And then again, would anti-fungal treatment address this?

  • Reply

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