LDN

[DebE13]

I seems nothing goes easy...... I've waited almost two weeks to hear back from the rheumatologist. Called once, was told I couldn't make an appointment until the doc reviewed my records. Waited some more. Called yesterday and they said they could make the appointment but it wouldn't be until April and with the nurse. I was polite but REALLY. I am in pain that I can no longer tolerate because it never lets up. Sure, I will tough it out another five months. I called the location 45 minutes away that is much bigger and was told the same thing. I messaged my PCP and told her the situation and asked if she would just let me try LDN to see if it helps. She agreed but I have to make another appointment after just seeing her two weeks ago. This is ridiculous but I can get in next Friday so I am anxiously awaiting some relief.

I really know nothing about LD, only what's been suggested here. I'm not sure why she needs to see me again but are there more things I should be asking?

I barely slept last night because of the joint and muscle pain everywhere. It will be a long week but better than April.

I'm still determined now to try Tirosint but am simply too tired to go at it right now. I will give the LDN a try and see what happens. It wouldn't be smart to try two new meds at the same time anyway.

As a side note, with these new pains my D has also become worse- WD is the norm. I'm still dabbling with the lowest dose of entocort to keep night issues at bay. I forgot if this question was answered already but I can stay on the entocort, right? I take 3mg about every five days. I'm afraid if I give it up it will stop working if I need to go back on it.

This has taught me that things can always get worse.

[tex]

Deb,

With that kind of appointment scheduling, rheumatologists are pretty much irrelevant, and may eventually become extinct.

There are no known interactions between budesonide and naltrexone.

Your PCP probably requires an office visit to satisfy the regulations imposed by the so-called "Affordable Care Act", especially before prescribing a medication for off-label use. Good for her for agreeing to help.

Good luck,
Tex

[louis]

Deb,

i really want you to get better, cause one can feel your pain and frustration just from reading.
I will be honest here, i hope its ok....
So i have to say again, if you get such painfull autoimmune response from your body, there is something really wrong with what you put in it - either food or maybe medication. I really dont think more meds will solve this for you. Ive read here somewhere that lnd might help, but it needs like a couple of month to even feel a difference. I hope it will help you faster ofcourse. But I think if you really want to get better you have to change your view on looking at this. In my opinion its not about what medications you can take to solve it, but what you not take/eat, so your body can calm down and stops being in this highly inflamed state.
Thats how i see it...

[brandy]

Deb,

Saw your other post----Fatigue, joint pain and dizziness can all be symptoms of perimenopause/menopause. Most women think it is just hot flashes and night sweats.

I've followed your situation since you've been on the board. With the level of your suffering I'd probably be trying LDN at this point (I have not used it.)

It took bioidentical hormones+iron+B vitamins to get me out of the death like fatigue I was under for about 7 months.

Mentally file away to check into your hormone levels way down the road. The problem I encountered was the conventional wisdom in my town is for medical professionals to advise women to "tough it out" (periomenopause/menopause) after the results of the giant study on Estrogen. I think the name of the study was World something or other and around 10,000 women were enrolled in the study. I can't remember the specifics of the study but I think it showed increase risk of cancer/heart disease etc with supplemental hormones.

Problem was......I felt like death for month after month after month without the supplemental hormones. It came to the point where quality of life meant more to me than possible risks.

Blessings.

Brandy

[Vanessa]

Just wanted to post that I am thinking about you Deb, hoping you find answers soon! Keep plugging away.

[DebE13]

Thanks Tex, I still haven't heard back from their office after two calls. I will NOT ever be seeing that doctor if that's how they conduct business. I understand the situation and they can only see so many patients in one day but it just isn't acceptable. Hopefully things will go well with my PCP and I'm assuming they will since she has already messaged me that LDN can be done on a trial basis. I plan to propose that she act as my middle-man for my thyroid treatment also. The endo from far- far way that I saw this summer said she would be willing to take me on as a patient and work through my PCP for the general management of my care. Maybe it would be better to phrase is as she would be available for my PCP to ask questions to........ if she is agreeable to that arrangement then my health insurance should cover my visits when I need to travel out of network because she will make the referral needed for the preauthorization. I'm not sure if she will be comfortable with that scenario or not but I have decided that no matter what happens, I am parting ways with my current endo. I still need one for my cancer follow-ups. One step at a time.

Louis, thank you for your thoughts. This is the exact reason I love this site. People share their experiences, are genuinely concerned, and are not mean to each other. I have put a lot of thought into LDN because I don't like taking any meds at all. I also believe it was this same attitude that caused me to spiral out of control. My CC was untreated for 2-3 years after my dx because I became frustrated with my GI. I tried the protocols for MC (pepto, immodium, asacol, etc) and found no relief. Predisone worked great the first time around but my MC returned with a vengance when I stopped. I tried everything natural under the sun while refusing any other types of medication. I did not know at the time that CC fell under the umbrella of MC so when I googled it, I found very limited information that said the cause was unknown and there is no cure. I finally found this group in 2011 after a recommendation from another site. I tried prednisone again and it did not work and caused some very nasty side effects. Once I learned about diet changes I went GF, SF, DF, and egg free. It's been about four years now with a strict diet and I still have D. I no longer have constant stomach aches and can recognize foods that I shouldn't eat. There has been great improvement yet new autoimmune issues have popped up and they only getting worse. My supplements are all recommended from people on this site. I know it is not a guarantee that I won't have issues with them but I am confident that what I am taking is not causing or aggravating my issues. I'm not saying that foods isn't causing some of the inflammation because I am still experimenting with possible offenders. I question nightshade, legumes, peanutbutter, some nuts, and fructose- all which I eat on occassion because the meat, rice, and vegetable diet gets so monotonous. I don't notice any bad reaction when I eat these foods but since I always have D, I don't know for sure. I tried a pork and rice diet for breakfast, lunch, and dinner for a week a while back and did not notice any changes at all. Since I have other issues I'm dealing with I put the elimination diet on the back burner for now. Tex has mentioned that ongoing autoimmune issues can be a possible reason why someone with MC cannot gain remission. I fit into that category and wonder if that is the reason I am not finding the results I have been trying to achieve.

I understand that the LDN will not be getting at the root cause of the problem but for right now, I need some relief. It may work, it may not. I would like to try tirosint and that is next on my list. I think my plan of attack is backwards but my endo threw a wrench into it. My throat has become very sore (not the inside, like a cold) and thoughts of cancer pop back into my head. It has been months now that I have been in constant pain and it surely has to be a stress on the body to endure it.

Brandy, I will definately keep hormones in mind. I am like clockwork so I don't think that factors into the mix, yet. But now I have something to look forward to.

[tex]

Deb,

Did you notice the posts by the new member who had a thyroidectomy 5 years ago, who commented that she is also having treatment issues. She made this remark in the thread at the following link:

I had a thyroidectomy in 2010. Since then I have been either hypo or hyperthyroid with synthroid. Right now I am hypo. Still working on getting med right after 5 years.

Newly diagnosed collagenous colitis

I'm beginning to wonder if very many endocrinologists actually understand how to properly treat patients who have had a thyroidectomy. Their treatment protocol seems to suggest that their training comes from drug company reps, rather than from real-world medical training. But maybe I'm just inclined to be cynical.

Tex

[DebE13]

I agree! I have never been the typical patient in any way, if there is such a thing, but you would think it would be glaringly obvious that my treatment plan isn't working. My far-far away endo told me within ten minutes of talking to her that she did not think I was depressed or a hypochondriac but needed a different treatment plan.

Thank you for all the I information you've given me. At least I can keep moving forward. Without this site and the kind people here, I would have given up a long time ago.

[louis]

I think its not a good sign if you still have D. with your current diet.

Did you ever try fasting/juice fasting for some time? I know people with multiple autoimmune issues that found great relief, just from fasting for a week with orange juices, then slowly introducing one food at a time and carefully watch the body reaction.

As for the diet after fasting or in general - for sensitive people it might be better not to eat carbohydrates and protein together at the same time. So not rice and pork at the same time, as this can be very difficult in digestion. Rather eat rice with some vegetables at one meal, and pork with vegetables at the other. That could be the reason why you didnt notice any changes when you eat the same thing at every meal. But you are certain that these 2 are really safe? Pork can be highly inflammatory for many, not all ofcourse. Rice and Pork had higher scores on my Enterolab then diary.


I know, you said you dont want to do the elimination diet right now, but keep in mind that this might give you relief from pain in a matter of a couple days or 1-2 weeks.

[DebE13]

I missed Mellie's post. I wish I would have had a heads up that it is more than just taking a pill and you live happily ever after.

I finally had a call yesterday from the rheumatologist's office. I told them how long I had been waiting and was going to follow up with my PCP at the end of the week because I was told I had to wait until April to get in. She was not at all understanding and proceeded to get very snotty with me saying that it is not my PCPs specialty...... After dealing with major attitude instead of a little compassion and seeing if they could squeeze me in I decided there is no doubt I will not use that location if I need to see a rheumatologist in the future. It may have nothing to do with the actual Doctor but the receptionists and nurses are the gatekeepers so I will not subject myself to that frustration.

Thanks for the suggestion about the elimination diet, Louis. I will need to go at it from another direction once I'm ready to commit. I'm not sure juicing would be doable for me. I don't tolerate orange juice well but just juice in general may not get me through the day. If I don't eat some kind meat at each meal I don't last long before getting ravengingly hungry. Worse yet, I get the shakes and very weak if I don't eat right.
I've tried so many approaches to the elimination diet over the years that the only way that it would be useful to try again would be to eliminate everything and start with one food and hope it's not one I react to.

I have had occasional Normans with the diet I am on now but it is elusive and appears out of nowhere then doesn't return until I think it's no longer possible.

[tex]

That's sad. It sounds as though she's in the wrong line of work. She should be working in a tax appraisal office. Probably she's crotchety because she has arthritis and her boss is treating her. But that puts the handwriting on the wall, because surely her boss wouldn't tolerate that kind of behavior in his office unless he condoned it and/or felt that way himself.

Most patients are already under more chronic stress then they can safely tolerate, so they certainly don't need any additional stress generated at their doctor's office.

Text

[carolm]

Hi Deb,
I've been away from the board for awhile (moved, got a new job, etc) so I've only read this thread. I'm sorry to hear you are still struggling. From what I've read from others LDN is helpful for some. In addition I would encourage you to comb back through all of your meds, vitamins or any supplements for gluten or soy ingredients. Here's why:

I was taking an omega-3 supplement in a liquid form. After 3-4 weeks I started having pain in my feet (of all places). A few weeks later the pain included my lower legs, and then progressed to pain in my hip joints. I thought it was probably just the onset of whatever autoimmune disease was going to get me next. A few more weeks later I hurt all over-- back, arms, etc. It was hard to carry my laptop and climb the stairs at work. Then I mentioned it here and Polly said "look out for tocopherols. They are soy." So I went to my supplement and checked. Sure enough-- A-tocopherol-- right there on the label. How could I have missed that? I thought I had all the additives memorized but clearly missed that. I stopped taking it and the reversal started within days. Pain left my back and arms first, later my legs and then my feet. Oddly enough I am left with pain in my heels, but I am not impaired like I was becoming. I could have easily been diagnosed with fibromyalgia then, with the way I was headed. All from an additive in a daily vitamin supplement. It had a cumulative effect and caused inflammation all over. I learned my lesson. Before this I would have thought an additive would be a small thing-- annoying if nothing else. Turns out that wasn't the case at all for me.

I know this won't solve all your problems but it's always worth a look while you are chopping away at causes.

Best wishes--
Carol

[tex]

Hi Carol,

It's good to see you posting again. And thank you for sharing that helpful insight. I have mostly avoided soy for the last 10 years or so, but back then, an EnteroLab test showed that I was not sensitive to soy. About 3 or 4 months ago, after having a reaction to peanuts, during which my guts stopped working (ileus — IOW no motility or peristaltic pumping action), I became suspicious of soy, so I ordered another EnteroLab test. Sure enough, I am now sensitive to soy.

I find this very interesting for 2 reasons. Firstly, I have mostly avoided soy in all my food, because I consider soy to be animal feed, not food fit for human consumption. But I never bothered to worry about trace amounts, since I wasn't sensitive to it. And secondly, I find it more than a little concerning that someone would develop a sensitivity to a food for no obvious reason, and despite the fact that they had been avoiding all but trace amounts for about 10 years.

But to get to my point, when I looked at all my supplements and meds (and all the foods in my diet), the only thing I could find that contained soy was fish oil. That was the last place that I expected to find it. Why would anyone put soy in fish oil? Anyway, my point is that I found it in the same place that you found it, so omega-3 supplements must be high-risk items.

Tex

[carolm]

Tex, Yes, the cumulative effect was startling to say the least. I really was to the point I hurt all over and it was starting to impact my daily activities. Where would I have ended up if I hadn't stopped it? Scary thoughts-- and as always, I am grateful for the knowledge of our MC family here.

In June we moved 4 hours east to Kansas City. I'm in the suburb of Overland Park, to be specific. I had a little mini-flare about 2 weeks after we moved but I had tried a couple of new brands of almond butter and chocolate and I wonder about cross contamination. Not that moving was without it's stresses but I really can't complain. We sold our house ourselves in 18 days and that all went smoothly. Leaving my colleagues and friends in Hays was of course the toughest part. We downsized, threw out lots of clutter and had great movers to get us here. We like our apartment and our neighbors, although we'll be house hunting in a couple of months. And we get to see our daughter often, not to mention many more cultural events. Oh-- and the World Series! Go Royals!!

Last month I was hired by Quintiles as a Regulatory Specialist. Quintiles is a global clinical research organization- primarily pharmaceutical research. Prior to research studies starting I check the informed consents to make sure they meet all of the FDA and legal guidelines so that patients are well informed and safety procedures are identified. Quintiles may run the drug studies for a sponsor/drug developer. We also approve informed consents for university studies. Also, in some cases we are contracted to write the informed consent for the study. I'm told I'll be co-writing one for AstraZenica this week. It's interesting stuff. I've checked mostly cancer studies so far. Working for a corporation is certainly different than the not-for-profit settings I'm used to, but there's a lot of flexibility in the schedule and even work from home options, which will help me pace myself and stay rested. It's a surprisingly relaxed atmosphere. Although I'm in remission, it was important for me to find a place where I could flex my schedule as needed, because I still may have a morning or two per month that I just feel rough. I had no idea when I interviewed that they put so much emphasis on work/life balance but I'm ecstatic that they do. I feel fortunate to have this opportunity.

So that's where I'm at. Everything is still a balance but I've gotten my life back 98% as long as I'm diligent and make good choices. I will always be gluten, soy and dairy free and I'm to the point it doesn't bother me one bit and rarely gets in the way of socializing or eating out. It's just part of me, like my brown eyes or being short.

Carol

[tex]

Carol,

Congratulations! It sounds as though you've found an ideal place to work. That kind of flexibility can be priceless for someone who has MC, and while it may be challenging to keep up with all the FDA regulations, you should certainly be qualified, and the uniqueness of most research projects should keep you from becoming bored with the work. What more could anyone want?

Tex