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Posted 7/24/2011 8:12 PM (GMT 0)

Sorry for the long saga, but if anyone has any parallels with this ordeal or has any questions that we could put to infectious diseases, immunology and gastro doctors next week this would be really helpful...

My daughter was diagnosed with moderate UC affecting 40 cms in 2009. She was put on pentasa granules and was pretty much in remission until May 2011 when she caught a virus which gave her a severe headache and nausea. This was diagnosed as possible glandular fever and was immediately followed by a group C beta haemolytic strep throat. She was admitted to hospital because her CRP level was 57, her platelet level was as low as 64 and her neutrophil levels were 1.2. Brain and liver scans were all normal. The acute symptoms of the virus passed after a few days and the throat cleared up with a course of Penicillin V. She felt unusually tired afterwards, but was told that this would pass. It transpired that several of her friends had had glandular fever at other universities during that term. At the time, my daughter experienced no UC symptoms and so she was told to resume the Pentasa granules.

Fast forward to June 2011. My daughter felt much better and decided that she would go on the holiday she had previously booked. Unfortunately during this, she broke out in really horrid mouth ulcers which spread down her throat and onto her lips. The GP thought he saw a throat infection and gave her penicillin as well as acyclovir for a possible herpes simplex (cold sore) infection. He also told her to stop taking the pentasa (apparently this rarely can cause mouth ulcers). Three days later, we took her to A&E because she couldn't swallow even drinks and had started developing large red nodules on her shins (erythema nodusum). She had also started passing mucous and fresh blood for the first time since the original UC was diagnosed. Her CRP was now very high (127), but her blood count was normal (as was ferritin and triglycerides). The herpes simplex virus test was repeatedly negative. However, the Epstein Barr Virus (Glandular Fever) viral load had increased from 4000 in May to 13, 762. However, no doctor was able to explain why she had developed any of the symptoms outlined and also no one seems to be able to explain why her "EBV IgG positive seroconversion had not become IgM positive". A CT scan showed her liver and spleen to be normal, but a thickening of the rectum, simoid and lower descending colon was noted which was very atypical for a diagnosis of UC. The Gastro doctors were baffled because they double-checked her initial diagnosis by sigmoidoscopy which was classically UC not Crohns. After a week on massive dose of IV antibiotics (ceftriaxone and metronidazole) and IV hydrocortisone steroids, the mouth ulcers cleared up, but she has now been left very tired (unable to stay awake for more than a few hours at a time) and with 8 weeks worth of oral steriods (prednisolone + calcichew + omeprazole) to take.
I should welcome any advice that would aid her recovery as well as any suggestions at all that would explain why a viral load would increase so that she was "dc positive but edna negative".

PS I don't really understand all of these immunological terms; I am just reading them off the discharge sheet! Any interpretation would be welcome too.
Thank you and good health to all!

 

Posted 7/24/2011 8:34 PM (GMT 0)
What I am about to relate to you might save your daughter a whole lot of pain, suffering, and even death!

I had the same issue with ulcers, skin problems, and severe fatigue that you are describing. In the course of six months, I went through a half dozen different doctors and no one could figure out what I had. The closest anyone came to figuring out what was going on was to diagnose the ulcers as pemphigus but even those tests were inconclusive. It took about six months of pain and suffering -- during which time I couldn't even kiss my newborn son! -- before I figured, out on my own, that all these weird symptoms were caused by food allergies!

In my case, I suspected that I was reacting to eggs because my lips, mouth, and throat would react immediately when I ate eggs. I ordered an allergy test kit and confirmed that I was having a severe reaction to eggs and also to soy and dairy (whey/casein). I also figured out on my own that I am sensitive to gluten. Once I stopped eating these allergens, all of my symptoms cleared up. My energy levels returned to normal, the weird skin eruptions stopped forming, my face and back acne cleared up, and the ulcers in my mouth went away.

The ulcers took the longest to resolve after the dietary changes. I ended up taking LDN to help speed the healing along (which I still take). Even now, the lip/mouth ulcers flare up if I'm not careful and accidentally come into contact with eggs or soy.

My recommendation is to either find a really good allergist or order the allergy kit online (as I did). Once she eliminates all the problem foods, she should see a dramatic difference. In the meantime, start her on LDN. It will help tremendously as well. If you want to figure out why this is happening, look up "leaky gut".
Posted 7/25/2011 12:24 AM (GMT 0)
1Londoner1,

Wow, what a story... sorry to read it. And welcome to the forum.

Sounds like XtraOrdinaryGuy's experience is similar to your daughter's and it makes sense, in a non-sensical world. Food allergies or intolerances are big offenders and can cause all kinds of reactions, including emotional reactions as well.

In addition to doing food allergy testing, I would recommend your daughter start a food journal - to see if correlations come to light between certain foods and reactions thereafter, also it will serve to make her more aware of what she eats.

I am a big proponent of LDN, and would definitely recommend it to you - it will boost her immune system which has been weakened by all the drugs she's been on.

I know there's a compounding pharmacist in England that specializes in LDN, if you're interested, I'll get you their info.

Good luck and let us know how she progresses.

Posted 7/25/2011 1:05 AM (GMT 0)
I cannot clarify the immunology test results you cite, but if your daughter received a diagnosis of UC in recent yrs, she likely needs to be on maintenance med continuously to prevent flare-ups. Pentasa is not the best for everyone, and there are alternatives. Also, antibiotics can cause major problems for people with UC because they upset the already precarious balance of flora in the gut. That can lead to more infections, fungal & others that prolong diarrhea. Many UCers take probiotics daily to help overcome these problems-- things like primadophilus reuteri, bifidobacterium, etc. Another point is that ulceration in the upper G/I tract can be a sign of Crohn's disease, which can affect mucosa in the mouth, too. Sometimes it takes a few yrs for gastros to differentiate Crohn's from UC in a given patient; these ailments are still medical mysteries. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 7/25/2011 1:16 AM (GMT 0)
The glandular fever part of this is what got my attention. Mono (what we call it here in the states) can cause a terrible sore throat and a lot of swelling in the neck, and will make you absolutely so tired that you cannot get up. I remember when I had it at age 16 I slept through all meals for a whole week. My mother would wake me, feed me, and I'd go right back to sleep. After that week I spent another week just laying around. This acute phase was preceded by about 8 weeks of headache and fever and general malaise. After the acute phase was over I was still easily tired, caught every upper respiratory infection in my school and had lost about 20 lb. Blood tests for the antibodies are not always positive (at least not when I had it) - my daughter had it at age 7 (two years ago) and her DR missed it the first time she came in, too. She got treated for strep (after a positive fast culture), but when she still had sore throat and fever after 3 days of antibiotics - and after she said to me "Mom, I'm SOOO tired" - I took her back and the ped screened for mono. Bingo!

I would say that your daughter is suffering, at least in a large part, from this nasty Epstein-Barr virus. The steroids will help her, but essentially this is a waiting game where eventually she will not be tired any more. It might be several weeks or even months. Rest is the word for her. Be mindful of alcoholic drinks, because this virus can cause hepatitis and sometimes enlarge a spleen (so physically risky activities are also contraindicated).
Posted 7/25/2011 2:01 PM (GMT 0)
Oh, I need to add that all the adverse allergy symptoms did not start until after I started on various forms of mesalamine (oral and suppositories). I definitely do not handle mesalamine based drugs at all.
Posted 9/19/2011 12:04 AM (GMT 0)
I wish I could post a more encouraging update to this saga, but unfortunately two months on it is still ongoing. Very high doses of IV steroids and antibiotics seemed to stop the original mouth ulcers and erythema nodusum within about a week. It was then agreed to restart the Pentasa to stop any unwelcome UC reappearance and begin an 8 week oral prednisolone (steroid) taper. During this period my daughter had some good days/weeks and some bad ones when she was extremely tired and suffered headaches/joint pains/fevers - mostly in the mornings. On the whole, the trend seemed to point towards a slow recovery.

The consultants continued to take lots of blood tests. They thought that the steroids would inhibit the ability of her immune system to deal with the glandular fever/mono/Epstein Barr virus and that therefore could have explained the continued viral load and tiredness. The headaches and joint pains could have been side effects of the steroids. They still could not explain, however, why she wasn't producing the expected antibodies to the virus.

Fast forward to yesterday... I didn't think too much of it when the first mouth ulcer appeared, but today it seems to have spread and she is complaining of an accompanying sore throat. I think an urgent doctor's appointment tomorrow is called for. I'm not sure what the consultants across three departments: infectious diseases, immunology and gastro can do now... and she is supposed to be returning to university in another city next week for the Autumn term... Does anyone have any similar experience please that might help?

PS She didn't test positive for various allergens such as gluten nor nor the herpes simplex (cold sore) virus
Posted 9/19/2011 12:58 AM (GMT 0)
Did you try the LCD diet? The food allergy test is not that accurate and food intolerance doesn't show up.

If it's bacterial, then try probiotics and especially fecal transplantation.

If it's viral, then I can only suggest to keep searching for a doctor who knows what to do.

Sorry. I can't be of more help.
Posted 9/19/2011 2:22 AM (GMT 0)
Sorry to read that your daughter's cycle of symptoms seems to be recurring. The mouth ulcers are the most puzzling as we don't hear about them generally on this forum. I wonder if you would post on the Crohn's forum whether members there could give you more insights or advice. Best wishes for your daughter to find the help she needs ... / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
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