I have the name of a doc inToronto and just sent her an email with all the literature on vancomycin to see if she is willing to prescribe it for you. I will let you know but her name is Dr. Aliya Gulamhusein. You can contact her directly and ask. You can mention that I (Cynthia Buness) sent her information.
Thank you. I saw that she is one of the Toronto Liver Centre doctors at UNH. My doctor is working on referral to the clinic (at my urging).
Dr. Gideon Hirschfield will see you or make sure one of his colleagues does. He and they are familiar with vancomycin and willing to consider treating you with Vanco.
Toronto General & Western Hospital Foundation
R. Fraser Elliott Building, 5th floor, 5S-801
190 Elizabeth Street
Toronto ON M5G 2C4
Get directions
Tel: (416) 340-3935
Let me know if you have any problems and I will contact Dr. Hirschfield directly.
@Kellym Hi Kaitlyn, my compassion for you as I remember learning I had PSC given little scary information and sent off with the impression I’d be back at some unknown time needing transplant. That was 4 yrs ago after an event of almost liver failure. The first 2 years, I was paralyzed and discouraged. Here’s the good news. I had periodic bouts that seemed like pancreatitis. I discovered Managing stress, diet, hydration, and sleep improved all symptoms of UC and PSC over several months. SYMPTOMS included: nausea, abdominal pain, weakness, difficulty sleeping, mental fog, itching, headaches, reflux, severe bloating, extreme fatigue, and anxiety. I have diffuse intrahepatic (small liver duct) beading throughout my liver. This is the better type as it is slower progressing, and no large duct blocking. It is possible for the liver to make new pathways, and to calm inflammation which is what leads to the duct sclerosing that causes the beading. It’s in a way like the UC inflammation causing ulcerations leading to scaring and blockages in the large intestine. Or with crowns ulcers can occur from mouth to anus and are deeper ulcerations. The issue is auto-immune inflammation.
Diet should consider your particular sensitivities, but common culprits are processed and dairy. But, you should look carefully at meats and eggs as the way animals are fed and treated could also be of issue. I do best with organic. When symptomatic, I avoid meat, eggs, all cheese, and raw vegetables. Steaming is good. When not symptomatic, I use feta, Parmesan, and goat cheese. I eat fish, shrimp, scallops, turkey, chicken and occ. red grass fed meat without dyes, or antibiotics. Eggs free range, almond, rice, or coconut milk. I get good quality sliced turkey, and roast beef fresh versus packaged. No soft drinks or sweet drinks. Fibrous fruits and vegetables can be emulsified in smoothies, or soup with bullet RX making them easier to digest. Best to gets vitamins and minerals from food. You need sunlight for D3 and can take supplement if blood shows severe deficiency. Also, studies recommend 1-2 cups of coffee a day as good for liver health.
Rare beer or wine and smallest dose of any medIcine I can if I take anything at all to protect liver. These diet measures and avoiding alcohol also keeps rheumatoid arthritis calm. If your inflamed you won’t absorb, or digest well.
Medicines I use occasionally Benadryl and Bile binder for itching, Benadryl or flexeril or melatonin for sleep. Benadryl can have opposite effect in some people. Ondesantron also called Zofran for nausea, apple cider vinegar for reflux or heartburn.
I’ve become allergic to a couple antibiotics, and save the option if I get pouchitis, or infection with duct blockage. They are not an across the board treatment as different variables particular to you would be assessed. I’ve had a colectomy resulting in a pouch which sometimes becomes inflamed and infected requiring antibiotics.
I’d encourage 1-2 walks a day, meditation and yoga as well as a bedtime routine.
Each person has their own set of circumstances. You’ll learn more with liver specialist. Also, to keep abreast of what is known, and knowledge is growing… research the world conferences on PSC. IVE LEARNED ITS MORE COMMON THAN FIRST THOUGHT, BUT OFTEN MISSED DIAGNOSIS. I believe this as I had symptoms progressing over 2 decades. I’m now 58.
I now see my liver specialist every two years. With PSC the first blood level marker is Alkaphos elevation. Other liver function levels rise as condition (blockages) compromise liver. Large duct blockages will more likely cause more severe blood level changes. Those ducts when necessary are stunted open. Not a treatment for small ducts. From your posts it sounds like you have small duct beading. If your diagnosis said diffuse that means throughout the liver. If not, it may be very early.
I’m no longer overwhelmed or afraid. I catch symptoms early and adjust my lifestyle and diet quick. I feel good. Prognosis is likely, I’ll live as long as my grandparents and parents at least into my mid 70s.
Read from national institute of health, and Hepatology and gastrointestinal journals. Annual world health conference videos can be found on you tube. I hope this eases your mind at least some with power of more knowledge.
Also, write your health summery should you need it for emergency room and ask your liver specialist for a summary to give your doctors. Hepatology clinics are pretty busy so it does take time for appointment. But, as said earlier you can call and ask to speak with a nurse for help if your GI doc hasn’t done yet. If your liver function levels were up and now going down you and your symptoms are less intense you can worry less. But, really focus on managing stress, diet, hydration and sleep. Please write with questions…Margo
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Hi Kellym, just lurking by and thought I would chip in something. I am in BC but I was trying to remember the name of the Dr. that has about the highest reputation I know of on this stuff in Canada, should I end up back in Ontario. And Cactusgirl is one step ahead of me. Dr. Aliya Gulamhusein is as cutting edge on this that your going to find in Canada. From my research, you’d be in good hands with her or by extension, anyone in her circle. RJM
RJM
Thanks for your input. This information is very helpful. It brings me some comfort knowing that there is good medical care available to me. Now I’m waiting for my doctors to refer me. It has been tough because I was diagnosed and then both my family doctor and gastroenterologist have been on weeks of holidays. So I’ve felt very alone with stress and anxiety and given very little information about the disease.
Margo,
Thanks for your lovely, informative note. I went to see a naturalpath who suggested an autoimmune diet (on top of my medical treatment which I won’t be ignoring). I see a dietitian next week for advice and diet plan. I have 3 autoimmune conditions (hypothyroidism, colitis and now PSC) so I’m hoping the right diet can help in some way.
@Kellym Hi Kelly, sorry I got your name wrong in my last note. You are welcome. I didn’t realize your dos were on vacation adding to feeling alone. I resonate with you on that. Knowing my docs are with me makes it so much less scary… what does the autoimmune diet consist of? I agree with you on the autoimmune focus. I have SYSTEMIC UC, PSC, AND RA. The itching resolved from the PSC, but I also have UC related skin and eye symptoms at times. hope you keep in touch on what you learn and how you are doing…Margo
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Margo,
The beginning advice for an autoimmune diet is gluten-free and dairy-free. Apparently, many people have food sensitivities to these foods which can elicit an inflammatory response which is involved with autoimmune disorders. I will learn more next week I have a feeling more food elimations are coming. Not sure why diet is not looked at more by medical professionals. I was given no dietary advice from my gastroenterologist and he even said a social drink would be fine? Confusing with what I read online about PSC.
Kelly, to answer your question of when to go to the hospital. One of the main worries we have is cholangitis. This is an infection of bile caused by a blocked bile duct, and is usually announced with jaundice, itching and varying degrees abdominal pain. My main instructions were if I had a temp more than 101.5 degrees that could not be attributed to anything, I was to get to a hospital.
Hello Margo, I enjoyed reading your perspective
I did not get much luck with naturopathic perspective per se
Hi, somehow I missed your post until now. Can I ask which doctor you see at UNH? How long did it take you to get in to see someone? Any other advice about the referral process would be much appreciated. Does your doctor support the use of Vancomycin? Love hearing from someone near Toronto!
Kelly
Hi Kelly,
I see Aliya Gulamhusein at UHN. My family doctor referred me to a surgeon to have stone removed, and subsequently my gall bladder, then that doctor referred me to UHN after he mentioned the Liver clinic they had. Timewise it was about 4-6 months from that process, but it could be sooner if you were to ask your family doctor for a referral. I haven’t discussed the use of Vancomycin as of yet. I wish you a quick referral process.