Its been a while...and I am in a bit of troube

[Rose]

Hi all

It has been quite a while since I last posted. Was sort of getting overwhelmed and felt I need a bit of a break though popped in now and then for a catch-up and would have contributed to a discussion had I felt that I had something to contribute but as usual, there were lots of 'experts' here doing a fine job.

I had been doing OK though I did have a few scary episodes in the last 6 months. The first was when I went to urologist to see if he could help with my frequent UTI's. He did an ultrasound on my kidneys, saw a cyst which he was unsure about so went for a scan. One hour following the scan I was called back to the X-ray department had another scan with contrast. This time they scanned my chest, abdomen and pelvis. I knew something serious had been detected and this was confirmed a few hours later when the doctor told me they had found lung cancer. To cut long story short, after consulting my pulmonologist she was able to get very experienced radiologists to compare that scan with the ones done on diagnosis. I was informed 3 days later that it was scar tissue from the WG. What a relief. Dont know which 3 days were the worst...that or the 3 days last month when I was waiting for the result of a breast biopsy. Yes, found a lump I was lucky enough to get a cancellation for a mammogram a few days later and had a biopsy done there and then. It turned out to be fibroadenoma....scary!

During this time I was aware of an on-going UTI. I had been prescribed Macrodantin but it was not doing its job 100% as I had signs and symptoms of a UTI but symptoms, I decided, I could live with. I did not want to go on other antibiotics ..... also took cranberry etc to help. It seemed to get worse lately though apart from the frequency, urgency and cloudy urine at times I had/have no other symptoms I had my 6 monthly appointment last week with my nephrologist who had ordered a urine culture. I wasn't at all surprised when it came back positive but the shock is that I have acquired a SUPERBUG.....namely Klebsiella pneumonie (ESBL positive which renders it a Superbug) Resistant to all but the carbapenems group of antibiotics. These are the big guns in antibiotic treatment and the last resort. It requires hospital admission for about 10 days of IV therapy. As I have no other symptoms, he has decided not to treat me unless I develop a temp, pain etc. My WBC done the same day as the urine culture was within normal limits. I feel fine at the moment, just a bit sleep deprived with all the nocturnal visit to the loo. I am very worried though and have spent the past few days finding out all I can about this condition.

I had a consultation on Friday with a GP who wears many hats (also a homeopath, naturopath, acupuncturist) in the hope that he could help me keep this infection at bay. He has prescribed many things, mostly supplements to get my gut back into balance. The probiotics he prescribed contain 60 billion live organism per cap which I should take twice a day. Now that is a very, very potent probiotic. I am a bit concerned about this. I have read quite a bit about probiotics being dangerous for the immunosuppresed...lot of articles on the net about this. I do take a daily probiotic but just a small dose as I do believe they are very important. The GP says it is not nearly enough and he is surely right but I am immune-compromised!!!! This is where I need opinion/help. Do you take a probiotic? Have you been warned of the dangers? Am I being over cautious? What dosage do you take?

Sorry for such a long post. I would like to say Hi to all the members who have joined recently and to the old members who know me, hope things are going well for you all.

Rose.

[gilders]

Hi.
Did I read it correctly in that you were diagnosed with lung cancer, but it turned out to be scarring from WG? I was also told I had cancer before WG was confirmed. Scarring seems to be an issue as well, kidneys in my case. It looked like I was having a relapse, but it turned out to be scarring that was continuing to cause damage even after my relapse had been knocked back into remission.

Thanks for the Hi to the new members, which I am one of, although a 19 year veteran of WG.

I guess your Dr must think you can beat this SUPERBUG yourself, are you on immuno-suppressants at the moment?

Sorry I can not comment on whether high dose probiotic is a good choice or not. I was not aware of any dangers involved with them and the immunosuppressed.

[Rose]

Hi Gilders

Yes, thats right. Lung cancer was suspected for me also before diagnosis in 2008. This recent incident was scarring from injured tissue caused by the WG back in 2008 before treatment. We were lucky to have had previous scans to compare with.....saved me an operation.

I am still on Cellcept 1500 g per day and pred 5mg daily. I was able to go for quite a while with symptoms before consulting a doctor because they were not that bad. Nonetheless, I do have this infection. He explained that his only ammunition is that group of antibiotics and he would rather wait and see if it gets worse. If so he would use them. Apparently some people have colonies of these living in their bodies and are asymptomatic. They do not require treatment but they are a danger to others in a hospital environment, esp the elderly, immune-compromised and the very ill......one of the reasons for the rapid increase in Superbug infections throughout the world. As for me I do have symptoms and I am trying every natural remedy out there to help keep the UTI at bay and hope it doesn't get worse...so yes I am guessing he is hoping I can beat it myself.

The scary thing is that the articles on the dangers of the use of probiotics in the immunosuppresed/compromised make a lot of sense. I think there is a use for them, when the body is depleted which is usually the case when someone is ill but can overdosing be dangerous...... and how do you determine this?

A belated welcome to the forum, Gilders. With 19 years of experience with this disease you are surely going to be a valued member

Rose.

[mishb]

Hi Rose,

Welcome back - gosh you have come back to us with lots of surprises.

I am so happy that you don't have lung or breast cancer.........because, well, WG is quite enough really.

I had many many UTI's but haven't had any at all since my last daughter was born - nearly 21 years ago.
I can empathize with you in regards to the pain and frequency etc, but, sorry, I do not know of the other superbug infections - or even probiotics.

Sorry. I hope someone can help

[Alysia]

Hi Rose.
I tried probiotics and couldn't bear it. I had terrible diarhea from it. but maybe it is because I have colon involvement. I must say that it sounds to me dangerous to take probiotics. I suggest you try to find healthy nutrition instead.

[annekat]

Nice to hear from you, Rose! I have always thought probiotics were a good thing, help with digestion, promote healthy flora in the gut, etc., but I have never taken megadoses. I have taken them while on antibiotics to combat the affects of those on the gut. But Bactrim doesn't seem to be a problem for me, and I still might take them if I had them, but haven't bought any in a long time. I do eat lots of yogurt, and drinking kefir would also be good for promoting good gut flora. But that wouldn't work for people not using dairy products. unless maybe it was soy yogurt or the like. Anyway, sorry I can't help you with the megadoses of probiotics or the superbug, either.... but I'm very glad you did not turn out to have any sort of cancer.

[pberggren1]

Hi Rose.
I tried probiotics and couldn't bear it. I had terrible diarhea from it. but maybe it is because I have colon involvement. I must say that it sounds to me dangerous to take probiotics. I suggest you try to find healthy nutrition instead.

How did you take the probiotics Alysia? Were they in capsule form or in a food?

[Rose]

Hi Alysia
I also have colon involvement and this new doctor has me taking anti inflammatory nutrition used by UC and Crohn's disease patients.. I am aslo taking digestive enzymes and L glutamine which apparently is good for the cells in the digestive tract. My gut has been damaged from the disease and also the medication. I am sure my 'good' gut flora is very much depleted and this has probably been contributing to my frequent UTI's. Saw the doctor again today and we have come to a compromise.....I will take a much lesser dose than he first suggested but more than I was taking before. So we will see how it goes.

[drz]

Thanks for the update. I think many of can empathize with the cancer scares since our Weg treatment increases our risk of several types of cancer. I would try to see if one of your doctors can get a consult with some of the doctors that do them for us Weggies, probably at one of the big centers like Mayo or John Hopkins or Cleveland to see what they recommend. There must be some Weg expert doing research in this area some where.

[Rose]

Hi Drz
Hope you are doing well. Do you mean to get another opinion to confirm it really is not cancer? Apart from being told just before diagnosis that they thought I might have cancer and had a fine needle biopsy which ruled it out, I also had an X ray a few years later where they picked up this 'Lung cancer' again. I was told then that they found this by my rheumy, The pulmonologist ordered a scan immediately and she and the radiologists were certain then it was scar tissue but to be absolutely sure I was followed up for over a year with 3 monthly X rays checking to see if the lesion got bigger. It didn't. That was in 2010. This latest scare was picked up incidentally. They were scanning my kidney and saw this in the "lung window" I had no respiratory symptoms. It was in the exact same area but my pulmonologist was concerned (then I got really worried) because of the description used by the radiologist and there seemed to be some changes. Anyway, they had lots of previous scans and X rays to compare so everyone is pretty certain that it is scar tissue and no follow up required. That was 6 months ago now and I still dont have any respiratory issues and my lung function tests are within normal limits which surprises the doctor as my lungs show quite a bit of damage on X rays.

So I am happy I have the right diagnosis. Is this what you meant...making sure I have the right diagnosis?

Rose

[Alysia]

How did you take the probiotics Alysia? Were they in capsule form or in a food?
Hi Phil,
I tried both capsule and probiotics in food (like yogurt) and in each case it was a disaster.
thanks for asking :thumbup:

[pberggren1]

Hi Phil,
I tried both capsule and probiotics in food (like yogurt) and in each case it was a disaster.
thanks for asking :thumbup:

That just seems so odd to me hun. I've never heard of that before.

[drz]

I would be concerned about how to manage (treat?) the infection in your case. I know infections can cause a Weg flare or increase in residual symptoms.

I do know people who have failed to get correctly diagnosed from a needle biopsy by a local clinic but it got picked up correctly at the Mayo as part of a routine second opinion and consult. So I would also want to be sure about their diagnosis too. This is most likely is a very slow growing cancer.

[Alysia]

That just seems so odd to me hun. I've never heard of that before.

"it is what it is" ​(quote I learned from someone wise)

[Alysia]

Hi Alysia
I also have colon involvement and this new doctor has me taking anti inflammatory nutrition used by UC and Crohn's disease patients.. I am aslo taking digestive enzymes and L glutamine which apparently is good for the cells in the digestive tract. My gut has been damaged from the disease and also the medication. I am sure my 'good' gut flora is very much depleted and this has probably been contributing to my frequent UTI's. Saw the doctor again today and we have come to a compromise.....I will take a much lesser dose than he first suggested but more than I was taking before. So we will see how it goes.

Hi Rose, can you, please, write more what are your symptoms, treatment and nutrition ?

[Rose]

Hi Drz

Yes this infection is a worry. As they only have one group of antibiotics which is sensitive to it and because i have few symptoms, they want to hold off treating it, keeping the antibiotics for when and if I really need them. Meanwhile I just must monitor how I am feeling and at the moment I feel well. Should I develop pain, loss of appetite, temp etc i have to contact him immediately. But I know how things can change quickly with WG so I am concerned.

As far as the needle biopsy is goes....this was done on another part of my lungs when first admitted with WG. My lungs were full of "golf balls" size necrotic tissue so they just biopsied the one that was the easiest to access. This one that has formed scar tissue, they can see it on the scan before and after treatment. This has been there since 2008, I had no lung symptoms then although my lungs were involved and I have no lung symptoms now. No weight loss, nothing....surely if something was going on it would have reared its ugly head by now. Also when my chest, abdomen and pelvis was scanned they were looking for metastasis or enlarged lymph nodes and none were found....have a pretty bad case of diverticulosis, though.

The WG was eventually confirmed by a kidney biopsy and, again I had no obvious kidney symptoms, even normal blood pressure though had some microscopic blood in my urine but that was initially was put down to a UTI. But I was sick, very sick. Blood and urine test soon showed kidney involvement and thats when I had the biopsy and the diagnosis.

If I win the lotto i will fly over and consult with a Mayo specialist. Must be really reassuring to have these WG experts treating you. How Lucky you all are.

I once did ask a doctor here to consult with the vasculitis center in the US and his response was...well no response. Look I think if they were unsure about something the would but they are confident they have the right diagnosis..and it wasn't just one radiologist involved in reviewing my scans.

[Rose]

Hi Alysia

Think I must start with my recent visit to the holistic doctor, We had a long chat and everything he told me was right on the ball ..even the part of why he thought I got WG, he said all auto immune diseases strike a person who is vulnerable at the time. The person usually has 3 things going on which make him/her susceptible 1) Under severe emotional or physical stress 2) Exposure to some sort of infection and 3) a genetic disposition. This was nothing new to me as I had figured that out myself as this was certainly the case in my situation though I have read many people say they were perfectly fine and healthy when they got ill.

Anyway, he went on to say that healing the body starts in the gut. I have big problems with my gut and have had since that first initial infection when I got ill which was a severe case of gastroenteritis in 1989. He said I have obvious gut inflammation and his treatment plan is to try to reduce this by removing known foods which cause inflammation, giving nutritional supplements which will help heal the gut wall and restoring the good gut flora with mega doses of probiotics. Of course I dont expect him to cure the WG and neither does he, but if he could help with the bowel stuff anf the UTI's that would be great.

So below I will give you a list of the products he has put me on which you can google. As far as inflammatory food is concerned he wants me to omit all wheat
eggs, soya, dairy, peanuts and shellfish from my diet. I am doing OK so far though must admit to a wee bit of cheating at breakfast. Just have to have my slice of toast with tea and milk...am working on it! It has only been 5 days or so since I started but I am feeling good and food taste great. Dont know if this could be coincidence. Anyway i am willing to give his suggestions a try as it would be great if everything functioned there normally again. But the stuff is expensive and I know he is only charging me what I would pay for in the shops. Actually a few things were even cheaper.

Metagenics.........Ultra inflamX (Seems to be lots of them but the one I have been prescribed is: Rice Protein Concentrate which is wheat, gluten dairy and soya free)
Metagenics....... Glutagenics
Solgar ............... Digestive Enzymes
Metagenics........ Ultraflora Balance

Also: Acivated charcoal and high dose Vit D3 (exact dose to be determined following result of blood test)

I usually check reviews on Amazon. Must get on with the housework but I will PM you my symptoms in the next few days.