Mystery unfolding and going with nuclear protocol!

JLH · Post by **JLH** » Mon Mar 31, 2014 2:38 pm

Y'all have me raring to go on LDN. Tomorrow I will step down to 1 Entocort capsule. I started on 2 on Feb. 10th.

Hopefully, my doc's office will call soon with an appointment for me.

Pat · Post by **Pat** » Mon Mar 31, 2014 6:37 pm

I've had 3 colonoscopies and never had ANY form of remission afterwards. I guess we are all different!

So glad to hear that Zizzle and Monique are doing so well on LDN. I too keep getting better and better but very slowly. No normans yet, but I think I am headed that way!

Pat

Zizzle · Post by **Zizzle** » Mon Mar 31, 2014 9:11 pm

UPDATE:
So I looked up the potential side effects of oral Vancomycin, and NOOO WAY IN HELL am I going to take it! Whaa?? I would need some serious convincing to give it a try. I let the pharmacy put it back. My insurance would have paid more than $1000 for it!
http://www.mayoclinic.org/drugs-supplem ... g-20068893

Meanwhile on LDN, I reintroduced CORN for the first time in 6 months, in the form or non-organic popcorn. Probably ate 2-3 cups worth. No noticeable symptoms, but my rash was worse the next day, for the first time since starting LDN. So I think corn is still out.

I had the most pristine, textbook, incredibly long norman today. It was so unbeleivably normal, it made me laugh. I wanted to take a picture!

My main issue right now is low BP and an apparent flare of POTS (highest BP reading in the last 2 weeks was 90/44). I get POTS flares every few years, and it appears to be related to my joint hypermobility syndrome/EDS, which makes me prone to autonomic nervous system dysfunction, which results in low BP, dizzy spells, the hand tremor, etc. I just learned that lack of sleep is a major cause of the adrenaline drops and spikes that cause the low BP. I was majorly underslept in the weeks leading to my annual meeting at work, and I certainly have not caught up. I am a little concerned that the LDN may be affecting the overall quality of my sleep and perhaps making this worse. I need to do a better job of pushing lots of fluids and salt, and sleeping more! I'm wanting to exercise more, but exercise can make it worse. I blacked out after showering after a workout where I ran a mile, walked, and lifted moderate weights. I suspect dropping prednisone is also making it worse, as I'm less able to retain fluids. So far it's a relatively mild inconvenience, but it does make me feel fatigued and causes mild headaches. I have to be very careful if I squat or bend over to put on shoes, etc. I can easily get woozy and black out.

But overall I still feel good and the rash continues to fade.

Polly · Post by **Polly** » Tue Apr 01, 2014 7:12 am

Hi Z!

Wise decision to forego the vancomycin, IMHO.

It does sound as if the POTS is giving you some problems. Just a caution - with hot weather coming, you will need to pay even more attention to your water/salt intake. Are you completely off of the pred now....or still tapering?

Polly

Zizzle · Post by **Zizzle** » Tue Apr 01, 2014 9:15 am

Hi Polly!
I'm still on pred, and sped up my tapering schedule to 1 mg every 2 weeks (instead of monthly drops). I'm at 7 mgs now. I've also dropped plaquenil to 200 mg/day.
I was having POTS symptoms when I first started the prednisone, and they cleared up promptly. My average BP while on higher doses of pred was 100/70. I've read that beta blockers and a form of steroid are often prescribed for POTS, but I'm not interested in more meds. I can get out of bed, unlike some POTS sufferers, so I'm not complaining. Just don't want to faint at an inopportune time!

In addition to good quality sea salt, I'm wondering if there are other electrolytes I should be adding? More potassium? Coconut water? I'm already eating bananas daily. I have a natural powdered Gatorade substitute which includes manganese and other minerals. I also have Quintonic sea water vials, which I plan to start drinking again. Feels so wrong to ingest so much salt!

Kari · Post by **Kari** » Tue Apr 01, 2014 10:05 am

Hi Zizzle,

I suffer from orthostatic hypotension (and general low bp), so I'm quite familiar with the dizziness and starting to black out when standing up from seated, or from bending over. Wanted to let you know of a trick I learned in a yoga class recently - before you stand up, engage your core muscles and then stand. It works like a charm to prevent the black out feeling!!! Hope it will help you as well.

Love,
Kari

Zizzle · Post by **Zizzle** » Tue Apr 01, 2014 10:19 am

Thanks for the tip Kari! I'll definitely make it part of my routine.

Zizzle · Post by **Zizzle** » Tue Apr 01, 2014 11:46 am

I just talked to the NIH doc that will see me for the Myositis clinical studies I'm doing in a few weeks. He said he thought Vanco would be a BAD idea for me, and strongly suggested I avoid it, for fear that I may develop drug-resistant infections. He was fine with the Nystatin, but asked that I wait until after my visit. He said being on LDN was fine, because "it just masks your symptoms":???:

I'll be there for 3 long days and will get a full body MRI! All the rest of the tests and schedules are in the mail (no CTs, thank goodness) They offered me a hotel room, even though I'm only 40 minutes away! I'm so nervous and excited! He said they want to figure our WHY I have this. YAY!! ME TOO!!!!

Zizzle · Post by **Zizzle** » Tue Apr 01, 2014 2:51 pm

For those wondering what Plaquenil/Hydroxychloroquine does, this is from a recent Medscape article about Lupus treatment:

"Antimalarials have been used in rheumatic diseases for many years. HCQ's immunomodulating properties were discovered after it was used as malaria prophylaxis in the 1950s. This drug acts on different pathways and has multiple mechanisms of action, including blockage of low-affinity antigens (such as self-antigens), alteration of intracellular pH, decrease in macrophage-mediated cytokine production, inhibition of phospholipase A2 and C, decrease of estrogen production, inhibition of platelet aggregation and adhesion, induction of apoptosis, antiproliferative effects and it can dissolve circulating immune complexes.[16] Because the immune response against high-affinity antigens such as bacterial peptides is not impaired, the result is immunomodulation without immunosuppression.[17] HCQ prevents and alleviates articular and skin flares,[17] protects from UV light and is associated with a milder disease. It improves sicca syndrome and facilitates the response to MMF in patients with renal involvement.[18] Among other benefits, HCQ can reduce total cholesterol, very low density lipoprotein cholesterol and triglyceride and increase high density lipoprotein cholesterol levels.[19] By helping to control glycaemia it may also decrease the risk of diabetes. There are reports of an association with a reduction of up to 50% of the frequency of coronary heart disease[20] and of the risk of development of carotid plaque,[16,17] which makes it an especially good option for patients who are also treated with corticosteroids. It also has antithrombotic properties[19] and some potential antineoplastic effects have been described.[21]"

http://www.medscape.com/viewarticle/821226_3

Powerful stuff! The part about decreasing estrogen production was a surprise, and yet my cycles haven't changed a bit. Must be all the excess chemical estrogens all around us. Who needs more?

Zizzle · Post by **Zizzle** » Wed Apr 02, 2014 9:30 am

Wow, just got my schedule for the NIH Myorisk Study I'll be participating in later this month. It's an extremely comprehensive DM workup, so I surely hope they find something I can act on!

Testing Schedule over 3 days:

Blood work x2
MMT (Manual Muscle Testing)
Assessments, history, and physical
Pulmonary Function Testing
1st morning urine testing
Echocardiogram
EKG
Dermatology Clinic
Nailfold Capillary Study
Whole Body MRI
EMG
Chest X-ray
Rounds
Photography

Notice stool testing is absent

gluten · Post by **gluten** » Wed Apr 02, 2014 9:50 am

Hi Zizzle, Ask the doctors at the study why no stool tests. Jon

Post by **tex** » Wed Apr 02, 2014 10:53 am

Zizzle wrote:Notice stool testing is absent

How could what happens in the gut affect the rest of the body?

The sad part is, they probably think they know what they're doing.

Tex

Zizzle · Post by **Zizzle** » Wed Apr 02, 2014 10:59 am

I asked:

Me:
Curious, is there any stool testing involved?

Senior Nurse Specialist at NIH/NIEHS:
No, no stool testing. We will collect urine from you on the second day though...

Me:
That's a shame, given what we're learning about gut health and autoimmunity.

Her:
Feel free to mention it to Dr. X...

Sigh

Post by **tex** » Wed Apr 02, 2014 1:13 pm

That study is doomed to failure before it even begins.

Tex

gluten · Post by **gluten** » Thu Apr 03, 2014 8:43 am

Hi Zizzle, I would bring some of the research articles you have found. It is obvious that after they finished their education they forgot how to read and study. Jon