Hello again and Update

[ant]

Dear Potty People,

So sorry not to have posted for quite a few months. I must have missed a lot.....

to all newbies
for all the birthdays

Most of all, best wishes and my prayers to all who are going through a tough time.

Personal news is not much changed:
- my mother's dementia gets worse
- The 'get-away-from-it-all' apartment in Thailand is way behind schedule, but..... one day.....one day.......
- I am holding down a long term consulting job (something I was too tired during the first year or so of MC presenting itself and causing so much fatigue)

My medical news is not too bad. Since it may be of interest, here is an update:

Treatment.

I continue with the GF, DF, EF, Soy and other legume F, nightshade F diet. I am now able to eat most fruit (including making smoothies) and can sweeten food and drink with a little honey, maple syrup or glucose.

I am still on entocort (one every other day) which I adjust if a flare starts. I knock a flare on the head by upping to 2 entocort a day for a couple of days + immodium + Pepto-Bismol and by reverting to very plane food (fish, chicken, well cooked veg, steamed rice.)

I also take Vit D, B12 and Folic Acid and occasionally Vit K supplements. For the last 6 months I have also taken calcium and magnesium tablets for the Osteoporosis when I am not in a flare.

Clinical signs

I occasional go into a short flare of a few days. I am guessing this is triggered by accidentally eating an intolerant food (possibly one I have not yet detected).

Rheumatism in fingers in the morning has become very rare.

Dizzy spells occasionally.

With one exception (when I got bronchitis for about a week and took Cipro) no fever or obvious illnesses.

I have fungal infection in some toe nails that I am treating (I think this is the only obvious sign of reduced immune function - possibly as a result of entocort).

I once felt a rib have a short moment of pain when pressure was put it during a massage. But unlike before, when that clearly indicated a fracture, recovery was three or four days.

Medical tests

I had a full medical a couple of weeks ago. Basically it was good news especially on the osteoporosis scores which were basically saying no major change. I will post the technical details on the "Treatment Discussions" board.

Wishing everyone all the best and truly hope I am less absent in future. Ant

[Martha]

Good to hear from you, Ant. It sounds like you are doing well.

My month-long trip to Thailand in May was wonderful. Thank you for the chef's card in Thai that you sent me. As it turned out, we ate mostly at home. A very pregnant daughter-in-law, followed by a newborn baby, made it simpler to stay close to home. I loved all the sights, sounds, and smells, though. So much frangipani (plumeria)! That part, and all the fruit, reminded me of Bali.

Sincerely,
Martha

[mbeezie]

Thanks for checking in and giving us an update. Glad to hear that your health is stable and you are managing. Fingers crossed on the get away apartment in Thailand - sounds like a dream that you need to make a reality.

Hugs,

Mary Beth

[tex]

Hi Ant,

I'm sorry to see that your mother's dementia problem continues to progress, and the condominium project is moving slowly, but it's good to see that otherwise, things seem to be going your way. It's great to hear that you're now able to hold up to the rigors of a long-term consulting position, with all the stress that goes with that type of work in a hectic industry.

It's always great to see someone post an update that shows how a personalized treatment program is working, over the long-term. It provides valuable information and insight about treating and living with this disease that can't be found anywhere else in the world, and it gives us a standard by which we can compare our own treatment program, and our own progress.

Many thanks for posting this,
Tex

[DebE13]

Do you do anything to treat the fungal problems? My husband has the same issue as long as I can remember. The treatments seem like they have too many risks so he just leaves them alone.

[Gloria]

Hi Ant,

It's good to see a post from you. I think about you often and wonder how you're doing. I'm so glad that you are managing your MC with minimal medication.

I hope your apartment in Thailand will be ready soon.

I'm sorry that your mum's dementia is getting worse. I know how discouraging it is to see a parent deteriorate.

I read your other report on your osteoporosis. I agree that it's a good sign that you seem to be maintaining your bone density. I've been taking strontium for the past year and am hoping that I am either maintaining or improving my scores. I am, however, still taking 2 Entocort pills a day and don't know how much that is affecting things.

I hope you continue to do well.

Gloria

[Polly]

Hello there, Ant!

So good to hear from you again! And doubly good to hear that your health is stable.

I know how difficult it can be dealing with dementia. As you know, my mom also had it for 10 yrs. before she died. I often wonder if her "dementia" might have been due to brain damage from a lfetime of untreated gluten sensitivity. She did not have the Alzheimer's type - it was called "multi-infarct" type (from many small strokes they said). Anyway, I hope your mom is comfortable and safe and that you are satisfied with the care she is getting.

Love,

Polly

[tex]

Polly,

Are you aware of this research article, associating ischemic stroke and undiagnosed celiac disease?

http://www.ncbi.nlm.nih.gov/pubmed/19144365

Unfortunately, the article is in French, but the abstract I cited is in English.

Love,
Tex

[mzh]

Yikes, my mother had that!

[ant]

Thanks everyone for your kind comments.

Gloria, I have been considering strontium and may well try and add it to my supplements soon. I believe they cannot be taken at the same time as calcium? Also, I wanted to do the bone test without its help to see what effect the entocort might be having on my bone density. Perhaps I have the answer to that now.

Deb, for my toenails I used a lacquer that you can get at the pharmacy. Once a day file the effected nail(s) and brush on the lacquer for a few weeks. Results are not instant since it takes a long time for the effected parts of the nail(s) to grow out. I then use topical cream and tea-tree oil once a day to maintain/hold back the fungus. Also change my socks once a day and put anti-fungal powder in my shoes. It may not completely cure the problem but it has improved it in my case.

Martha, glad you enjoyed Thailand. Let me know if you are making another visit.

Best wishes, Ant

[Polly]

Tex,

Thanks for that reference. Verrry interesting. It does seem to confirm our suspicions.

Love,

Polly

[Joefnh]

Hello Ant, it's great to hear from you. Sorry about the late reply. Certainly my best of wishes and thoughts as you deal with your mothers condition, that can't be easy.

I'm glad the apartment project is still moving although late in completion. It sounds like a great place to get away.

Take care Ant

[ant]

Dear Joe,

Thanks for the hello.

I recon the apartment is still three months from being ready.

Hopefully you will be able to come out to Asia/Australia again sometime. It would be great to see you. (I have sussed out the food-intolerance friendly restaurants in Hua Hin and, of course, I will have my own kitchen eventually).

Best wishes, Ant

[Gloria]

Gloria, I have been considering strontium and may well try and add it to my supplements soon. I believe they cannot be taken at the same time as calcium?

I haven't heard that calcium and strontium can't be taken at the same time, but you may be right. It's not a problem for me because I take a calcium supplement with each meal and the strontium at bedtime.

Also, I wanted to do the bone test without its help to see what effect the entocort might be having on my bone density.

Every bone density test I've had has shown more deterioration. It is probably related to taking Entocort and also my low weight of 99-100 lbs. I'll be interested in seeing if my next DEXA scan result is better after taking strontium.

I know that you've been walking every day; perhaps that's helped you. I've been doing some walking, some riding my bicycle and some exercising. Not consistently, though.

Gloria

[ant]

I'll be interested in seeing if my next DEXA scan result is better after taking strontium.

Best, Ant

PS. not been walking as much as I should, what with slight imbalance problems, and the heat in Hong Kong.