Treatment Journal

Wed, Feb 22, 2012:  Boy have I got an update for you!  I think I’ll post it as a story on the main page though.  It’s regarding a doctor checkup I had yesterday.

Fri, Jan 13, 2012:  Happy New Year everyone!  Okay, so here’s the skinny on the latest.  So I stopped the Rifaximin a few days before I finished because not only was it not really helping this time around, it actually seemed to be maybe unbalancing my intestinal tract.  Doc wanted me to try some Oil of Oregano again to help any possible fungal issue.  I had started to also re-do the Xymogen 28 day cleanse protocol again during this time, however, had to change it up a bit since I can’t afford to lose any more weight (so never went to just all shakes).  I still was doing 1-3 shakes per day and have continued to stay on my related plant-based diet.

As far as all of that is going, I’m seeming to do fine.  Think I may possibly have a slight bit of the intestinal yeast issue again (despite the Oil of Oregano), so will contact my doc again next week to figure out what to try next.

Unrelated (I think), I have developed a problem with my neck and upper back muscles.  They got so tight a couple of weeks ago that I was having problems swallowing!  I’ve been doing some exercises, stretching, and using heat/cold to help.  I think honestly, part of it – if not all of it – could be allergy related.  It’s been very dry here lately and allergens have been VERY high and causing problems for everyone.  I haven’t been sneezing or anything like that, but my eyes have been dry/gritty, and have the muscle issue… which has also spurred on some migraines.  Ugh.

Needless to say, I think that as soon as I can get this muscle issue under control, that may help both my migraines and possibly other issues.  Since there is inflammation there, and possible muscle toxin buildup, that could be affecting all the other stuff.  I may even look into trying accupuncture.  Until next time.

Tue, Dec 6, 2011:  I had a check-up with my functional medicine doctor just before Thanksgiving.  We discussed how I was still doing seemingly well – no joint pain, more energy, etc. but that my ANA wasn’t negative yet.  I explained that I’m still on a plant-based diet and continuing to take supplements (see my recommended supplements page).  She stated that it could be that there is still a slight intestinal imbalance and that the T1/T2 balance  is still off.  We discussed how part of this could be due to a hormonal imbalance.  We looked back at the last variety of hormone test results (thyroid, estrogen, etc) I had and sure enough, I was just a bit on the low side.

So we’ve decided to boost me a bit – both on the hormone and intestinal fronts.  Therefore, I’m on just a tad bit of estrogen for only a few days each month, and we will give me another round of Rifaximin for good measure.

We started me on the estrogen immediately.  Due to holiday and work issues, I have waited to start the Rifaximin until this week.  I’ll keep you posted as to how this works for me.

Wed, Sep 20, 2011:  I just had a check-up with my rheumie a couple of weeks ago.  It went well.  As a matter of fact, he even made the comment “it seems like you got rid of your lupus, like it disappeared.”  I haven’t been having any issues, no joint paint.  Just migraines.  He ran some new labs, including a new DEXA scan, and I’m already back to osteopenia down from osteoporosis.  Yea!

Most of my labs are normal.  I am still showing that elevated ANA (I also was a little sick when I went in – which that could also have contributed to the ANA), but he had even said in the appointment that it could take awhile for some of the labs to go down to normal.  I sent my results to my treatment doc, who I will see in a couple of months.

Thu, Aug 25, 2011:  I’ve been on my newest supplements for just over two months now and doing pretty well, HOWEVER, I’ve been noticing the past couple of weeks some abdominal cramping and swelling, which is likely due to the NAC.  Those are possible side effects.  Therefore, I’m going to discontinue the NAC, but I do have some Immunocal Platinum that I will start taking instead.  I just have one month’s supply, but I have my checkup with my rheumie early next month.  He always does labwork, and I will see if he can run my ANA this time as well.  My hope is that having stayed to this anti-candida diet for almost 10 months now and been doing well at taking my supplements, that my results will be good.  I feel good!  Still have had no pain, stiffness or fatigue like I used to.  The only issue I have that is annoying to say the least, is having reoccurring migraines.  They’ve been frequent and bad the past month and a half, but I’m pretty sure it is due to the high pressure, heat, no rain and plant allergen buildup in my area.  Other people I know that get migraines have also noticed an increase in frequency and severity.  I hope my labs will be good.  Even if my labs don’t show “normal” yet, I still feel normal!  That’s what matters most!

Fri, Jul 29, 2011:  I’m starting a new calcium supplement today that has the correct 2:1 ratio of calcium to magnesium.  It also contains some vitamin D3, however, I’m already on 5-6000 IU of vitamin D3 already (to help reverse my bone loss from taking prednisone for a few years).  Still doing really well.  The only problem I had this month was a very bad migraine.  It lasted 3 days and made me sick – despite medication.  My guess, was a combination of continued detox, lack of fiber (I wasn’t able to take it that week) which helps clean out toxins in the intestinal tract, and the oppressive summer heat.  But still doing great!

Mon, Jul 11, 2011:  I’ve been doing REALLY well since I’ve added my latest supplements.  Have had much more energy.  Just feel better.  Ironically, Friday, I started getting a migraine, and still have it.  Haven’t had one this bad in probably a year or longer.  Aside from the migraine though, I’ve been doing pretty well.  I’ve found some recipes (I’ve tweaked them a bit) that have helped me stay on the foods I should be eating, that give some good variety.  That along with sticking to the supplements is helping me stay on a path towards more improved health!

Thurs, Jun 9, 2011:  I’m sorry I haven’t posted any articles lately.  As is with most people, things have just been busy with work and life.  I plan to rectify that this weekend.  I wanted to just let you guys know a few supplements I’m adding to my regimen as of tonight (and tomorrow).  I am adding today:  Pantethine, Alpha Lipoic Acid and Molybdenum.  Tomorrow I’ll be receiving (and adding) NAC or N acetyl cysteine.  Why, you may ask.  They are great chelators and help remove Acetaldehyde – which is a very toxic byproduct of systemic candida.  Most people are familiar with it without realizing it – it is the alcohol byproduct that gives people hangovers.  Hence, for those of us with systemic yeast overgrowth, eating any wheat or especially sugar, makes us feel really sick and awful – like a hangover.  Since wheat adds even more yeast to the system, and sugar feeds yeast, producing acetaldehyde.  I’ll write more on this soon, and let you know how these new supplements are helping, if I notice any difference.  Stay tuned!

Fri, May 27, 2011:  It dawned on me the day after my last update on here why my ANA may have gone up.  Last week I had been a little sick, was VERY stressed at work, not to mention I hadn’t been able to take my fiber for about a week, hadn’t been drinking as much water as I need AND I had been eating very very healthy all week (I always eat healthy, but I may cheat and have a little popcorn, chips and salsa for example).  Eating that well but not taking fiber and not getting enough fluids would prevent my body from being able to flush out toxins and any dead yeast adequately.  And having been a bit under the weather just contributed.  So, I don’t feel so bad now that the result had popped up a little.  I probably should have just waited to have the test done until this week or when things were going better.

Mon, May 23, 2011:  My doctor personally called me and left me a voicemail message about my ANA test results.  Too bad I wasn’t available to take her call, but at least she called and left a message.  Not what I was hoping, but still not bad.  My titer has gone back up, but only to the 1:640.

She stated not to worry, that it doesn’t mean anything bad.  She said it could be a response to my stress levels (I was pretty stressed last week due to work issues).  She said last week that since my thyroid is still not quite where it needs to be, my body may not handle stress like it should and that could affect my ANA.

On her phone message, she reassured me this could be the situation, and also just to make sure that I keep taking my supplements as needed to continue healing my intestines.  Until that is healed up more, the inflammation and dysbiosis will still be a potential issue.

I understand that.  And I must admit, because of work, I haven’t been able to get quite as much water, take supplements as needed – mainly/especially the past month or so.  I think that along with the stress probably has made this a problem.

Honestly, this does bum me out.  I was really hoping it would be lower than 320, or at least still 320.  However, this makes me definitely want to do something I’ve been planning on for a month or so – to do another cleanse for a few weeks.  Just like in November, just water, shakes (Dr. prescribed), and supplements.

I think giving my system a few weeks to just get only nutrients and not have to really process food will help things heal quicker, and give my body a break so the inflammation can calm down.

I’d like to do this in June, but it will depend on work circumstances among other things.  It’s still great news in a way, that my titer is still lower than it was before treatment.  I’m not giving up!!!

Fri, May 19, 2011: I saw my functional medicine doctor yesterday for a checkup.  Not much to say.  I’ve been feeling fine, everything seems to be okay.  She did say that based on my last thyroid levels, that looked fine, but a little borderline on the T4, so she may think about adding a smidge more Armour in the afternoon for me.  We’ll see.

I know that “technically” an ANA titer of 1:80 or lower is considered negative, but I asked her if it is ever possible to have a TRUE negative ANA again, to where it wouldn’t even show up positive.  She said yes, as long as there is nothing for the immune system to be reacting to.  I asked if we could test it since my rheumie didn’t in March and it’s been 6 months.  She said no problem.  We’re actually both quite curious what it will be since I had been 1:1280 for years, and then after just one week of treatment, it went down to 1:320!  Of course, she said don’t be upset if it has gone back up or hasn’t gone down any further, that it can vary depending on what is going on with my body at the time (food, stress, etc.).

I will let you know what the results are as soon as I know, so stay tuned!

Sun, Apr 10, 2011: I got my results in the mail from my endocrinologist visit…. I’m in range!!! So the current dose of Armour is working! Which means, it isn’t too much like my endo thought it might be, and I’m not hyperthyroid, so…. my energy I’ve been feeling is legitimate energy! Yea!!! Although I’ve been a little swollen here and there lately, but I think it is from stuff in the air (pollen, etc.) and also not getting enough fresh vegetables (plus I haven’t had my treatment shakes for a few weeks until just the end of this week when they finally came from being on backorder). Feeling pretty good today. Awesome!

Thurs, Mar 31, 2011: My appointment with my endocrinologist was canceled for today. Rescheduled to tomorrow since my doctor is out this afternoon. One day isn’t too bad. Of course, will have to wait until next week to see what my blood tests reveal as far as thyroid function since I’ve been on the Armour thyroid medication instead of Synthroid for 2 months now.

I think something has definitely changed for the better, quite suddenly actually. This is the first I’ve mentioned it to ANYONE – you my readers get to find out first. I noticed starting Tuesday that I feel good. I have energy. I mean, lots of energy. Almost like the energy you get when you’re at work and only have to work 1/2 day and then you’re on vacation for a week. I’m wondering if the Armour is partly because of it (or if I’ve gone HYPERthyroid accidently), and/or if it is just from just further healing and continuing on my special treatment diet and supplements.

Another factor could be that starting yesterday (Wednesday) I started taking a B vitamin and Selenium supplements. Those are in my Xymogen OptiCleanse GHI shakes I usually have each morning, but I ran out of that (and it’s on back order with the company) last week. I’m not sure that is it because, those are in the shakes so not new to my body, and it also wouldn’t account for the energy I also felt Tuesday. Hmmm. Curious. Just hope it isn’t temporary! I’ll let you know about the endo appointment results next week.

Wed, Mar 23, 2011: I had what I consider to be a pretty major appointment yesterday… I saw my rheumie for the first time since right after starting treatment. If you’ll remember, my ANA had been 1:1280 for years, but I saw him a week after starting treatment and my ANA had gone down to 1:320. Yesterday, we discussed that. First off, keep in mind, he always checks my breathing, heart rate, my ears, mouth for sores, and tests all my joints. Usually my joints are always swollen – he will say which ones. Normally, it’s always my knees, wrists and fingers a bit. This time – he mentioned none.

He stated he wasn’t sure what I was doing, but whatever it was, it was doing something. He asked again, what exactly it was I had done and was doing. I re-explained my treatment meds, the cleanse, and the diet. I also stated that my treatment doc, gastro and I all believe that it was the intestinal dysbiosis (infections) that was what made me autoimmune. He didn’t comment on that.

He then went on to say that if remission occurs, it usually isn’t until someone is in their 50’s or older, that he’s never seen it in someone that’s 36. What?! Did he just say, in essence, he feels I’m in remission? Me’s thinks so! Of course, it isn’t remission, but it is actually solving the problem of the CAUSE of the disease, so it is getting CURED. But, there is likely no convincing him of that. Especially since he had been talking to a pharm sales rep just before coming in to see me (I could hear them talking through the door).

We discussed bone density, and he feels there’s no point to do a bone density exam unless we start treatment for it. Of course, I don’t want to do that since those treatments are actually BAD (ie: Boniva, Fosamax, etc.). I did tell him I’m on 6000 IU of vitamin D per day. I think I’ll see about getting one from him anyway since I have no intention of doing those drugs, and I’d like to find out how quickly I’m reversing the osteoporosis.

I was also hoping he’d have me do another ANA among the tests he orders, but alas, he didn’t. He just ordered a CBC, SED, CRP, etc. as normal. I am going to see if my treatment doctor will run one when I see her in May. I’m VERY curious if my ANA has stayed at 1:320, gone back up any or gone even lower.

However, it is pretty major still I think that he feels I’m in “remission” and didn’t find any swelling. Oh, and I don’t have to go back to see him for 6 months! I usually have to go every 3-4 months. This will be the longest I’ve had to go between appointments! Yea!

Mon, Mar 14, 2011: I’ve been crazy busy, so haven’t posted my treatment/doctor updates in two months sadly. Ugh. But, I’m remedying that now. In January I went on round 2 of the antibiotics, which FIXED MY DYSBIOSIS!!!!! By the end of the 2nd week of those, things were MUCH better. My gastro wanted me to take some Flagyl (for 1 week) after the antibiotics which ironically, gave me issues while on the Flagyl. As soon as I finished it, I was fine again. My labs came back and my thyroid function was not so hot. I saw my endo by late Jan, and her tests also concluded what my treatment doc’s tests had shown earlier in the month – that lower dose Synthroid wasn’t cutting it. TSH was 9.66 – oops! T3 was getting low, but still in range. T4 was okay.

Per my treatment doc’s wishes (and I agreed), my endo semi-reluctantly agreed to go ahead and switch me over to Armour instead of Synthroid. Of course, we upped the dose. So my thyroid isn’t quite ready to try to function without help yet. That’s okay.

Saw my treatment doc again in mid-February and things were going pretty well. I just had blood drawn about a week ago to re-test my thyroid and see how I’m doing so far on the Armour. My results aren’t in yet.

I’ve been doing pretty well. This past week I’ve been iffy, but think it’s a combo of allergens in the air (especially with all the wildfires around) and I’ve been sick with a sore throat and pretty fatigued. I go in today to the doc to see what the scoop is there. I still notice I don’t feel right if I try to stray from my treatment diet any, so although my dysbiosis is good, and I’m feeling much closer to normal, obviously my leaky gut isn’t healed. I plan to keep staying on my treatment diet probably for at least a few more months and again, slowly try here and there items “off the approved list” to see how my body handles it.

I know that having been sick with lupus and RA for so many years, and having been damaged by the diseases and the meds, it may take a good while before I’m normal and healthy. It could be a up to 1-2 years after having started treatment. Hopefully it won’t take that long, but I’m prepared if it does. As quickly as I am progressing though, I am thinking a year max. Which would be great – just in time for the holidays this year! ; )

Day 2; Mon, Jan 10, 2011: I should have made this journal where new posts were always on top so you didn’t have to scroll down for the latest, so I’m remedying that with this second round of treatment.  In case you didn’t read my latest couple of posts, here’s the deal…  The first round of treatment worked, but not 100%.  More like about 80%.  After the first week of treatment in November, my ANA titer had dropped from 1:1280 to 1:320.  Trust me – that’s a BIG deal.  I had come off prednisone the day before starting treatment, and hadn’t needed it since (except for a couple of days, but that’s all).  That’s the first time since all this started that I’ve been totally off any/all immunosuppressive drugs.  And after the first two treatment meds – the antibiotic and the antiprotozoal, I was really feeling more “normal.”  However, once I started the antifungal, despite it doing it’s job, it gave me most of the side effects and really did a number on me.

Anyway, problem is that I apparently wasn’t on the antibiotic and/or antiprotozoal long enough, or it wasn’t strong enough.  Ironically, just this last week, it came out in the New England Journal of Medicine that the NEW recommendation for the strength and length of time needed for the antibiotic I was on is over 2x strong, and 2x long.  Hence, that is the new plan.  I just started yesterday taking the new stronger dose of the same antibiotic I was on in November, and will be on that for two weeks.  I’m then to start a different antiprotozoal for one week.

Hope is, this time around, it will finish the job.  Odds are, just by being on these, I will likely need to go on the antifungal again as well.  Joy.  Already, I’m noticing a little bit of the same differences as before, including getting a migraine today (got one on the 2nd day of the first round too).  I just hope this stuff will work well and I don’t have to do a 3rd round.  I go to see my endocrinologist in 2 weeks to find out what we’re going to do about my thyroid meds, and to see if my thyroid is regaining function.  Hope so!

Round 2…
Sat, Jan 8, 2011:

Overview of the thyroid system (See Wikipedia:...

Image via Wikipedia

I had some back and forth discussions with a nurse of my gastroenterologist between Thursday and Friday. Since I’m still obviously having intestinal issues, when I saw him last, he said if that happened, he wanted to do a scope. He still wants to. BUT, I wanted to see if we could do some less invasive testing like some more lab tests first. I also mentioned several times to the nurse that the Rifaximin and Alinia both seemed to be helping/working, but once off of them, things started to go back to where they were. Therefore, it appears as though I do have some sort of protozoal issue, but we just weren’t treating long enough, or with quite the right meds.

After the tennis match of phone conversations by nurse proxy, it was decided to try Flagyl, see how that does, and if still problems, then… the dreaded scope. I’m excited about that, because I’ve read that Flagyl is quite strong and people see great results from it. That, and it tackles an entirely different group of little buggers.

On to today:

Had my followup appointment with my treatment doctor this morning. Told her how I’ve noticed some great positive changes such as the lower ANA and definite signs of killing the systemic yeast issue (although I’m not sure it’s entirely gone, but I’ll get back to that in a minute). I also told her that the intestinal issues had been resolving, BUT after the courses of Rifaximin and Alinia were finished, those issues started returning, along with the achiness in the joints (off and on). I did let her know I’ve been off prednisone since the beginning of treatment (I didn’t bother mentioning the 2 days I took it again since it was just those 2 days). I also explained how I’m still on the “treatment diet” along with continuing probiotics, sacchromyes, along with other nutriceuticals such as omega fatty acids, vitamin D, fiber, etc.

She agreed that obviously the dysbiosis is still a problem then. She also mentioned that ironically just a few weeks ago, a new study came out [ ] that stated the treatment recommendation of Rifaximin is at a stronger and longer dose than what I was on, and we should do another round at this new recommended level. Her only concern was that being on this med again for so long may possibly create a systemic yeast issue again, but that we could deal with that if it happens. (As I mentioned above…) I was happy to hear her say that, since if it does seem as though I might still have a bit of the yeast hanging around intestinally, we can then still finish those buggers off.

I’m SO EXCITED!!!! Of course, not that I have to go on another whole round of meds per se, but that we’re planning to get to the bottom of this and fix this problem. Since I’m already feeling better and have certain improvements, I have no doubt that once we fix this problem, then my body can finish healing and can finally slowly continue returning to normal.

On to the thyroid

My treatment doctor had wanted me to switch from taking Synthroid for my thyroid to taking Armour instead during my treatment. I really didn’t want to do that, because if I started feeling better during treatment, I wouldn’t know if it was from the treatment itself or from switching my thyroid medication. I waited until I was done with treatment and then saw my endocrinologist. I explained to her what was going on with everything. She ran labs. A few days after that appointment she called stating that I basically have no thyroid antibodies which means that it could be possible for the thyroid to reverse possibly (something I had asked her about and if we could work on). So we agreed that we’d lower my Synthroid dose for now, see how that was working, and then if it was doing fine, then stick with trying that and slowly weaning me down and then off thyroid meds. If it wasn’t working, then I wanted to go ahead and go on Armour. She said okay, but she thought that the (Armour) dose my treatment doc wanted me on was too high if I were to do that.

I explained all that to my doctor today and she agreed, it was actually better to have waited to switch until after treatment. She agrees that it’s possible that my thyroid function could return, so she’s equally curious as to how it’s doing. And we both discussed that the dysbiosis could be affecting it though. Anyway, she thinks either way the Armour might work better, but yes, the dose may be too high, especially given the latest results my labs showed that my endocrinologist completed.

For now, she drew blood to test my thyroid today (since have been on this new dose a few weeks), and wants me to discuss all of this with my endocrinologist when I see her in a couple of weeks, and possibly still switch over to Armour. She called in the rx of Rifaximin. Like I said earlier, the gastro called in the rx of Flagyl. My plan now is to take the Rifaximin, then after, take the Flagyl. I’ll be tracking my progress during these treatments to see how things are changing. Hopefully with positive results, I can avoid the…

dreaded scope!
The Journey Continues
Fri, Jan 7, 2011:

Semi good news, only took prednisone for 2 days. Didn’t seem to notice a difference so stopped. Why good? I’m not back on prednisone.

Pain is odd. Joint pain comes and goes and is in different areas. Also new muscle pain in trapezius and neck for a week now.

Its odd because I am feeling better in some ways and not in others. I have a suspicion that what’s going on is I still have an infection that didn’t get eradicated. Based on the symptoms, I’m led to believe it is protozoal in nature, and my antiprotozoal meds I had weren’t strong/long enough or quite the right ones.

I think if that can get figured out and taken care of, that will do the trick. I have a followup with my treatment doc tomorrow. I have also been talking back and forth via nurse with my gastroenterologist. Hopefully between the two, they can get to the bottom of this and finish “fixing” me.

I’m still continuing my treatment diet, taking probiotics and particular supplements to get me healed up. But as long as there’s a little bugger that’s a little troublemaker, then my body still won’t heal.

Oh, my blood pressure is still low. Also, my endocrinologist and I decided on the lower dose Synthroid for now and see how that works. If well then great. If not, then will try Armour.

I am hoping to get new labs done tomorrow to see how everything is coming along.

I am pretty frustrated. Just want to be better. 8 years of all of this in the prime of my youth is enough!

Keep saying those prayers and sending good vibes… still need them.

Treatment Round 2 (above)

What to do, what to do?
Thurs, Dec 23, 2010:

First, I have a quandary with thyroid medication. My treatment doctor wants me to take Armour and my endocrinologist wants me to stay on Synthroid.

My levels are ok as is on my current dose. Not only that but my endo doc tested my thyroid antibodies (which believe it or not have never been tested before), and one was 1 number outside of normal (I am 36, range for normal is 1-35). Doc said usually with Hashimoto’s thyroiditis, the number is WAY high (500-2000). The other antibody test was NEGATIVE. Therefore she doesn’t think my low thyroid is autoimmune related. Which that means antibodies haven’t been attacking it, which means it shouldn’t be damaged, which means it could very well reverse.

Now since my autoimmune tests have shown improvement, I’ve wondered if we could try lowering the dose I’m on to see if my thyroid could start coming back towards normal.

My endo doc says we could try that, and she has prescribed me the next lower dose. I told her also about the armour my treatment doc wants me on and the endo doc said that dose is too high. Ironically I checked a physician conversion reference chart and its actually about right or slightly high.

Catch is most docs want people on Synthroid, yet most patients FEEL BETTER on Armour.

Since I don’t see my treatment doc for 2 1/2 weeks, and I’m curious about stepping down, I have decided to try the lower dose Synthroid first. I’ll talk to my treatment doc about it and if that isn’t working then I’ll get on Armour… and if that doesn’t work I can get back to the higher dose of Synthroid I’ve been on.

The other quandary is even more frustrating. I have wanted off prednisone for so long and even though my treatment doc said I didn’t need to come off of it yet, my last day on it was Nov 7, the day before starting treatment.

Interestingly enough, I had no joint pain being off of it until halfway through my 3rd week of treatment, when I was also starting to get all the side effects from the 3rd med I had started just that week. I assumed the achiness was another side effect since it actually can be for that med. Also after stopping, that med could be in my system a week or two after. I’ve been done with it 1 1/2 weeks and I’m actually getting achier.

I really didn’t want to have to take prednisone again, especially since yeast can thrive on it, but I also know the body can’t heal if it’s inflammmed either.

Again, a dilemma. But I bit the bullet last night and took some prednisone. I only did because I know my treatment doc had said I didn’t need to stop it yet to do treatment, so it should still work even staying on it. I just hated being on it and didn’t want to give my systemic yeast overgrowth anything to feed off of during treatment.

I’m still on my cleanse diet, so being good. I’ll just have to figure out if I should take any more prednisone, if so how much and how often until I see my treatment doc.

You have no idea how much of a blow this is to me. I’m trying to stay positive and hopeful that this is still all going to work. There’s been DEFINITE improvements and I know being as sick as I’ve been for as long, this can easily take months or even a year or longer to get back to normal. It’s a long road to recovery and I just have to stay strong, and keep the Faith.

Treatment Round 1 (below)

Day 1; Nov 8, 2010:    Today I started a 5 week program to begin reversal of my autoimmune disorder.  This first week I am on antibiotics specifically designed to help eradicate the bad bacteria ONLY in my intestinal tract.  I am also on probiotics to help re-establish good bacteria, as well as beneficial yeast.  I have also begun a cleanse (water fasting) involving no food so my intestinal tract may start to heal.  So far, feeling alright, just a bit of a headache, fatigued, and some other expected side affects from cleansing.

Day 2; Nov 9, 2010: Much different today.  Hardly any energy.  In bed most of the day.  Still have the headache.

Day 3; Nov 10, 2010: Feel terrible. Major migraine. Nauseated.

Days 4-7; Nov 11-14, 2010: Felt TERRIBLE to say the least on day 4 and 5, although started to slightly feel better late day 5.  Migraine continued through day 6.  Had doc checkup during the week, all is okay.  However, I was dropping weight too fast, so started incorporating some light food late day 5 through today.  Will be going back off food and solely on doc prescribed shakes for awhile.

Day 8;Nov 15, 2010: Yesterday ended my first med, and today started my second med. Definitely doing something. Feel better, still easily tired. Noticed past few days feeling like I’m being choked. Throat has that sensation. Causes intermittent feelings of nausea.

Day 9; Nov 16, 2010: Feel better today. Had another doc visit today. Blood taken yesterday and today, feeling little like a pin cushion. : )

Day 10; Nov 17, 2010: Felt terrible today. Hardly any strength. Head feels like I’ve been through a few rounds with Rocky.

Day 11; Nov 18, 2010: Felt bad this morning, but better throughout the day.  Forgot to mention that I learned at the doctor’s office on Tuesday that I have ZERO aldosterone…  zip, zilch, nada…  which is at least part or likely all of the reason for my dangerously low blood pressure.  I know prednisone suppresses the adrenal glands (which mine are, and have been for awhile), which is where aldosterone is produced, and it subsequently helps the kidneys function properly.  So the thinking is, my kidney issues I’ve had as well as the blood pressure is HOPEFULLY caused by the prednisone.  If I can function without prednisone, in theory, kidneys will function better and blood pressure will go up.  Keep your fingers crossed!

Days 12-14; Nov 19-21, 2010: Pretty uneventful.  Last 3 days of no food though.  Was feeling okay though.  By Sunday night was starting to feel a bit off and drained.  Sunday night – the last night on my antiprotozoal med.

Day 15; Nov 22, 2010: Feel yucky today, but today was the first day of the antifungal treatment – the big daddy.  Keep in mind all 3 meds are tough guys.  Very first week was a strong, intestinal specific antibiotic, followed the next week with the strong intestinal specific antiprotozoal.  But the antifungals…..  whew!  They usually will give someone ONE for a fungal infection.  Just ONE.  I’m taking 21 DAYS worth.  So, bringing out the big guns!

Day 16; Nov 23, 2010: BIG DAY!!!!!!!  I got the test results from my rheumie (when I went  last Tuesday).  Keep in mind, when I went to see him, I had only been on treatment for a week.  One of the main tests for verifying if someone has an autoimmune disorder is called an ANA test, or, Antinuclear Antibody test.  Basically this test measures the level of antibody-antigen reaction in the body (in other words, just how much your body is attacking itself).  The results are measured in titers, or dilutions.  They will dilute the blood serum until they can no longer detect this reaction.  The last dilution in which they COULD detect the reaction is your ANA titer result.

These dilutions are doubled each time, ex: 1 part serum to 10 parts dilution factor (or dIH20) would be a 1:10 titer  or ANA result.  From there it goes 1:20, 1:40, 1:80, 1:160, 1:320, 1:640, 1:1280, etc.  Honestly, I’m not sure just how high the titers go.  However, when I was first tested after getting sick in 2003, my first result was 1:5120.  Soon after treatment started, it went down to 1:2560.  After about a year or so, it went down to 1:1280 and has stayed there since….

But on Tuesday I got all my lab results back and my ANA was 1:320!!!!!!  I can’t believe that it dropped that much that fast, in just one week!  I was hoping it might slowly drop.  Maybe after a few  months it would still be 1280, then by late spring maybe 640, and then maybe in a year be around 320.  So this is AMAZING!!!!  Obviously this treatment is working.  I know it’s the treatment as well as the support and prayers of everyone.  Thank you all so much!

Days 17-19; Nov 24-26, 2010: Did well Wednesday and Thursday. Had a little plain Turkey, plain rice and lettuce for my Thanksgiving lunch. Only allowed one small meal per day at this point. But unfortunately I think I paid for having the turkey today. Actually a little achy in a few joints today. So back to no food if I still have achiness tomorrow. 😦
Need some prayers and positive thoughts from everyone!

Days 20-21; Nov 27-28, 2010: Felt “off” all weekend.  Sunday was EXTREMELY tired.  Felt a lot of head pressure.  Drained.

Day 22; Nov 29, 2010: Had two doc appointments today.  Ran into a bit of a speed bump.  I “might” have an ear infection (from ear not popping fully on trip a few weeks back), which I have been prescribed antibiotics and ear drops for.  My treatment doc says it should be okay to do that and continue treatment.  BUT…  the other doc I saw today is concerned about my liver function.  Wants me to get bloodwork done (which I already have an appointment for that Wednesday).  So for now, guess the antibiotics will have to hold off until I know how my liver is doing, since antibiotics would further tax my liver.

I’ve felt confident during this whole treatment, had signs of progress, and still have faith this will work.  I’m asking for your prayers, good vibes, anything right now for support that my liver is doing alright.

Day 23-24; Nov 30 – Dec 1, 2010: Still haven’t felt well.  To top it off, I think I slept wrong Tuesday night and my back is really hurting to the point I can’t really turn my head without it hurting bad.  Lovely.

I went to the chiro today to get an adjustment that helped, but still didn’t quite fix the problem.  I also went to yet another doc appt. today, but to get my blood drawn to check my CBC/CMP/GFR – basically my cell counts, liver and kidney function.   Just feel really run down, knees and shoulders feel a little achy, felt a bit lightheaded all weekend and my nose has had a slight bleed to it since Sunday.  Will let you know the results tomorrow (supposedly in Thursday).

Day 25; Dec 2, 2010: So I got my results back.  My liver is doing okay.  It’s down a little, but still okay.  HOWEVER, my kidneys have taken a hit.  Still in range, but function has dropped over 60% from where it was.  Not much further and I could have to deal with some problems there.  I also have leukopenia and neutropenia.  In other words, my white blood cell count has gone way down…  apparently a side effect from the antifungal.  Catch is, I am supposed to start yet another antibiotic right now, and I’m only halfway done with the antifungal treatment.  Good news is, starting today I can have 2 meals a day now (of course still VERY restrictive as to what I can eat).  I’ve dropped 9 lbs and boy can I tell.  None of my clothes fit.  I really couldn’t afford to lose weight but again, didn’t have much choice.

Day 26; Dec 3, 2010: Still having bloody nose issue. Not sure if I mentioned it already but it started last weekend. Not full on bloody nose, but bleeding within my nose and the blood clogging my nose. I know it’s gross.

Achy today but little better. Got a massage today to help release toxins in the muscles. Lot of tension. Really sore. Feel like been hit by a car. Only 2 days left on cleanse even though another week on meds.

Days 27-28; Dec 4-5, 2010: Mostly the same.  Still sore from the massage even.  Little more energy.  Today was the last official day of the cleanse.  As already mentioned, still have another week on meds.  And even though the official cleanse is over, I will still be adhering to a pretty restrictive diet as far as what I will eat.  Obviously I have a lot of healing to do, a long way to go, so I need to continue to be careful about what I eat.

Treatment is now “officially” over – as far as the original meds and cleanse plan, but will still have to keep on the diet for a long while and may need to do more meds.

Day 38; Dec. 15, 2010: I finished the “cleanse” part of treatment officially on Sunday, Dec. 5. I still had another week of meds, which I subsequently finished up on Sunday, Dec. 12. I am unofficially still on the cleanse diet. I’ve decided that obviously to make sure this stuff works, I need to continue to take care of my digestive system. So I’m still continuing the morning “shake” that helps support my liver and kidneys (until I run out of what I have left, which should be this weekend). I’m also sticking with the approved foods that I was allowed to have (when I could have food) during the cleanse. Hence, still avoiding anything not approved from that list.

Last week I started incorporating supplements to assist my body in recovering from the damage done. So far I’ve started on vitamin D, Calcium/Magnesium, digestive enzymes, omega fatty acids, and continuing on the healthy yeast as well as probiotics. This Monday, 13th, I started also on olive leaf extract – a natural antiviral/antifungal. But I’m changing starting tonight to oil of oregano. It is also a natural antifungal, but better.

I started the prescription antifungal on Nov. 22, and within a week, I started feeling achy, started having nosebleeds, getting bloodshot eyes, feeling more fatigued, and just not well. I had bloodwork done which showed that I was not only feeling those physical side effects – which apparently are somewhat expected, but I also had the internal side effects from the drug as well. It has made me temporarily immunosuppressed, and has lowered my liver and kidney function. But, now that I’m off of it, that – and the side effects should improve. Unfortunately though, still status quo, still feeling bad for 3 weeks now.

I saw my regular doc today about it, and he doesn’t seem too concerned. Since I was on it for so long it could stay in my system for 1-2 weeks after stopping it. So I may feel bad another week or so still. He said if I hadn’t improved by then, to come back. By then I’ll have another check up with my treatment doctor anyway. This Friday, I go see my new endocrinologist. We’ll see if I need to stay on my current med, or switch to the other med. Also, will be curious how my thyroid function is anyway. According to yet another one of my docs, the thyroid is one of the first things to start going downhill when all this autoimmune stuff starts, and is then also one of the last things to start reversing. Therefore, nothing may have changed in that department.

Another thing to note… this is my first week back to work after having been out 5 weeks for treatment. It’s been rough. Especially since I’ve still had achiness, nosebleeding, bathroom issues, and fatigue. Luckily though, I’ve been able to just stay in the office for now, but I have a feeling I’ll have to get back to the lab starting tomorrow. Not sure how I’ll be able to handle that, given all the water and supplements I have to take as well as going to the bathroom a lot… and the achiness. Guess we’ll see.

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