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Hi,
I am not seeing Matia becasue we do not have the finances for me to fly out to LA. I am hoping you can still shed some light being patients.
I know yeast is part of my problem, becuase when I EAT sugar, my bladder symtpoms actaully improve for a few hours. I think I am feeding the yeast or bactiera and they are happy for a few hours.
I was seeing a nurse practioner who once had IC and is healed and treats people with antibiotics. She gave me a Fry lab lest and it found some weird mycoplasma infection. She wanted to start me on long term antibitocs, but something keeps telling me not to, so I am trying naturally to heal first. I already have bowel issues, and I feel antibiotcs would cause more damage.
I started no sugar/yeast diet 15 days ago, and the first week was rough. Muslce twitching, anxity, headaches, very tired. Frequncy was worse.
I have been on Matia's list one diet since Tuesday, and my bladder is HORRID. I use to wake up with no pain and the pain would begin after I eat in the day and be worse at night, but the past two days I wake up with pain the morning. I do not get it. I dont know if this is normal. I am allerigic to almost all foods. Everyting I eat casues my nose to get congested and my fingers to bloat up. I have elimated all grains excpet brown rice and somtimes spelt. I also have arthritis and this gets worse when I eat many foods too (inclduing veges) I am onlly 29 and I am haivng a hard time caring for my 3 babies.
I cant eat some of the veges on Matias list because I am allergic to them. I am already very thin because of all these differnet diets the past year trying to heal myself. I am concerned about malnutriotion as the IC body is already in need of viatamins and minerals.
I have stopped taking alll my supplements excpet: pro-bitoc, Viatamin D (I am very deficeint) Pro-C (vitamin C made for IC patients), magnesium at night.
Another thing I do not get, is when I eat a big salad (all greeens) by bladder frequncy always increases after I eat veges. It seems the healthier I eat the worse my symtpoms!
Ahhhhhh! If anyone has had advice, I would be so thankful. I also just stopped taking an anti-yeast med the nurse had prescribed for a month. I stopped that on Tuesday.
First I would like to welcome
First I would like to welcome you and say that staying on the diet while saving to go see Matia would be the choice I would make. Doing this alone is way too complicated. I sugest you buy her disertation it will help you understand the process better. It explains a lot of what you will and are going through.
I too tested for a billion allergies and well Matia didn't seem to be concerned about it. I eat some of those foods with out problems now. Alot of us have grain sensitivities and so you might find going off gluten to be helpful for now. Potatos go better with some and for some rice it will be up to you to figure that out. Alot of time the higher something is in vitamins the more it flairs us. For now we have to eat this way but the more we heal the more things will not bother us. You may not do so well with Raw foods either. Alot of pepole have trobble with the zuccini summer squashes because of the vitamin content.I also scoop the seeds and peel my cucumbers. Matia has decided to move this to list 2 because people are having problems with them. Alot of people do get thin on this diet but they end up stable as they restore health.
Often in the early stages as your immune system is being pushed your body is feeling worse it doesn't mean it is actually worse jut often when the immune system is being stimulated it causes burning.
If your taking supplements already you might check out the ones Matia uses so that at least your using something with in the range of her treatment. The natren probiotics are a big one in treatment but a lot of people do have trouble with this. I really would try to get out to LA as soon as possible. Where are you located? I have found that winter seems to be the cheepest time to fly there around Feb I used to get good prices. I lived there and would travel back and fourth at one time so I am farmilar with the area and Airport traveling very well. My heart always goes out to you Mom's out there I don't know how you do it. I have enough trouble taking care of my self.
Be well
Encouragement
Hi, You are making some really good choices. I had several rounds of anitbiotics and my IC became much worse. I think antibiotic therapy would kill off your good and bad bacteria. Then your yeast would get out of control. Matia has had several paitents that come to her for treatment after having long term anitbiotic therapy. In many cases, they are much worse. Antibiotic therapy is risky like chemo therapy. I loved Nicoles advice. Definitely, order Matia's dissertaion. When I read it, I felt like I was reading my IC case history. Everything started to make sense for me. At first, it seemed impossible for me to start treatment. My huisband lost his job and I was unable to work. I started talking about getting better and also started praying like crazy. My family knew I was really sick and was so excited that I had hope. If you are suffering from burning. I would get really focused on finding the source of your pain. My advice would be to temporarily stop taking your suppliments as they are very likely to cause pain. I would treat them like medicine and only take them under the care of a professional. Also, even various medications can increase you bladder pain. If you still have burning, stop all grains and have rice or potatoes with meals. Also, make sure that you are drinking the right water. I had three babies in three years at 29 as well. Then I took an inner city teaching position and my health fell apart. I truly understand the anxiety of wanting to start treatment and not seeing how it could happen. My guess is that you may feel worse on the diet because your body is starting to have "die off." Lots of weird symptoms happen as the body gets rid of various toxins. You have begun your healing journey :-)
Greens
The reason you might feel worse after eating the big salad with all the greens is that some greens are high in oxalates, which tend to flare the bladder. I do okay if I stick with just iceberg lettuce. Romaine and most other greens flare my bladder. Some vegetables are high in oxalates too. You can check it out and find out which ones to avoid. Also you mentioned that you take magnesium at bedtime. Do you think the magnesium could be flaring your bladder? Cutting the carbs can cause die off's if you have yeast problems. Most people with IC seem to have yeast issues. There are herbs that help cleanse out yeast. I would caution you against going on long-term doses of antibiotics. Taking antibiotics over the course of many years ruined my immune system. I believe they are not the answer to your problem.
Melsvensen
Hey! Welcome. I know a little bit about how stressed and scared you may be! I had to wait a long time before I found a job that could support my treatment costs- I too was praying for recovery and the right path to open up for me to do so. I waited a month before I could see Matia because I was in the process of moving and it was AWEFUL! I had started the IC diet and I was truly suffering from the die off and the high level of inflammaiton was through the roof but I was happy because I knew I had found the right place for a hopeful treatment that was going to help me and not just mask the symptoms. I think what happens is when you start the diet your body immediately starts the process of cleansing and while in the long term its good because you are no longer feeding and strenthening the yeast it also can increase symptomsof pain. When I saw Matia she prescribed me supplements and herbs that brought me out of a hellish place of pain - so the combo of herbs and diet was effective for me. Without her herb treatments I was in a kind of inflammation pain cycle? Now not everyone gets releif like me right away and some wax and wane. It's a diffcult process at first getting through the intial beginning phase is very rough indeed. But it is crucial to get supervision for IC treatment. I was trying to do it alone naturally and with a natuapathic doctor who had little to no experience treating IC (although alot treating yeast) and I was feeling much much worse! Not to mention the fact that antibiotics got me mostly into this mess. Why would I want to put more of that in my system. IC is about listening to your body! Follow your intuitions! I wish now that I had not waitied so long to get treatment - I knew about Matia for 2 years before coming to see her thinking I could deal with it by myself. ( My Ic was mild at that point) I wish I had borrowed the money or something but whatever that's in the past and I can't help it. Getting better is the most valuable investment you can ever make for your future! Your health is golden and priceless! Keep a little journal of what you eat and try to figure out what it is that is flaring you-maybe for now stick to steaming your veggies. Certain salad greens can be intense its true.Probiotics have made me feel at points better and worse - also take stock of what you are putting on your body. Drink only Spring water. not filtered or distilled. stick with the same brand. make sure it is not filtered and they put minerals back in. lotion- pure jojoba oil. soap- check out bomasense site which has bodycare products that are IC safe or try to use soap that is super gentle and has no vitamin E in it. I use kiss my face plain olive oil soap. avoid products with vitamin E! They can flare you. get a chlorine filter for your shower! these are future suggestions for treatment. sending good healing energy and thoughts for your healing. may you get the all support financial and emotional that your need to get well! come to the phone conference next saturday for support! peace to you!Mary
thank you!
It is so great to hear this is normal! I bought her dissertation about 6 months ago and read it, I was going to come out to see her, but then I had to quit my job and our fiances did not allow for it. I live in IL. I then started seeing the nurse because she would see me over the phone, I did not have to pay to fly out to her...but I have blown through all my savings now doing this. I know the cost of seeing Matia will pay off in the end, but I need to have that money first. When I read her disseration, I saw she knows exaclty what is gong on in our bodies and that is hard to find!
I am allerigc to potatoes (I get worse bladder pain, my nose runs and my arthritis flares) I only use brown rice as a grain. I am also allergic to dairy, so and butter causes me to bloat up like a ballon..lol! I feel like I can only eat plain chicken and plain rice and everything else causes some symptom. From the time I was a little kid I was always blaoted and felt not healthy and now I see I have had food allergies forever, and just did not know. I eat dairy and tomatoes all the time (I am allergic to those as well). I feel like this is caused some of my IC..my weakend immune system.
Yep, I have noticed after salads with a lot of differnet green lettuces my symptoms get bad. This is all great advice, I will try ice burg lettuce. I never eat it before because I know it is not as good for you vitamin wise. It will be such a huge step for me to stop taking all my supplemetns for a while to see if they are the culprit,I have been brainwashed into thinking I will die or something without them..lol!
Yeah, I have already done 3 thirty day antibitocs trails within the last year, and alothough I beleive the nurse I was working with cares a lot, I do not beleive it is the right path for me...especially with having stomach issues already.
I get so jelous of people around me, other Moms who are going back to school and enjoying there families, while I spend all my free time online or thinking about how to heal. I am thankful to talk to others who understnad my pain. I find on some other IC boards people scoff at me for the naturla approach and it is not as loving.
That's great you have the
That's great you have the book allready. Don't beat yourself up for anything you have done already it's in the past and all you can do is learn from it. As you heal you will tolerate more foods and get the vitamins you need don't worrie. Also a lot of her herbs do have vitamin content in them so when you do start know that. When you want to look for flights orbitiz has this option where you can say I am traveling x days between what ever dates you choose so you can check the whole month and see when the cheepest time to fly is. I know some people have just turned right back around after seeing her to go home. I understand the jellous thing I am jellous all the time but I just try to remind myself that at least I am not one of those ICers that don't have a good plan and I know I will get well again and have my life back and now you will too. I am happy for you that you have found ICAMA and hope that you are able to make the trip soon.
mycoplasma infections
When I first started treatment, Matia had me get tested for ureaplasma (a mycoplasma) and said that if it came up positive it was the ONLY thing she would have me take antibiotics for, because it's really hard to get rid of in any other way. I would try to get into treatment with Matia so that she can help you through that process if that's still what she would recommend. I wouldn't want to take antibiotics again either, unless I absolutely had to. I tested negative, so I didn't take any antibiotics.
You might want to try stopping all supplements and then adding them back in one at a time to make sure it's not one of them that is bothering you. I think that Vitamin C and magnesium can be tough on your bladder.
Magnesium
Well, I am almost sure now it is the Magnesium that was causing isses, which makes me sad, cause that is how I got to sleep. Without it, I have a very hard time sleeping, but with it I have to get up to pee...
I would love to see Matia, my husband and I need to start saving, but it seems every time we do, something happens (the van needs breaks and tired, air conditioning breaks..) Hopefully within the next 6 months we can save enough and things will stop breaking around the house!