BEYOND TIRED

[emmaline]

Hi Spiffy,
Fingers are really painful in the morning, but honestly, I think it’s working. I still have bad days, but the good ones are getting better and more often. I told my Functional Medicine Dr. how good I was feeling and he said he may have to check out the physician section of this website. Kinda funny! I hope he does. How are you doing? Any improvements?

[Linda L]

Emmaline,
Are you still on 10 mg of prednisone?
Linda L.

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[emmaline]

Yes. I wish I wasn’t. I want to get off of it ASAP, but the reality is that I would be in excruciating pain and unable to move and function without it at this time. Having some bad days since my last post. Once I feel things are better controlled, I will go down 1mg at a time. I thought I was doing great, but it just comes and goes. I feel great one day, then can hardly walk the next and can’t sleep because of shooting pain in my hands and feet, knees, elbows, tailbone, shoulders.
I’m open to any thoughts or suggestions. Thank you.

[lynnie_sydney]

Hi emmaline,
Yes, reducing prednisone is a difficult and challenging thing to do. When you are ready to consider tapering there are lots of posts fro people who have successfully done this. If you type something like ‘weaning pred’ into the search box at the top of the front page of General Discussion (where all topics listed) a lot of those posts will come up for you to look through.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[emmaline]

Okay. Thanks.

[Spiffy]

Thanks for your update. I have been thinking about you. I am doing okay. Sleeping very well. Fatigue a bit better, but still not perfect. Ra factor is hopefully down to 40 this week if it is following the one point a week thing. My anti ccp went from 1.5 to .9, which both are considered negative, but still nice to see it going the opposite direction. My neutrophils are still a tiny bit high and lymphs a tiny bit low. I have slowed down on lots of extra magnesium, because I got worried about my kidneys. My eGFR or whatever it is called went from 96 to 83 in several months. This has me a little worried, but the doc did not seem to pay much attention to it. I just had a mammogram and DEXAScan. They had to take two extra views on one side because my tissue did not spread out. Everything was fine, but now I am sore. I also broke out in a rash all over my chest afterwards. My doc said it was probably a reaction to the cleaner, but I think my immune system did not like all the radiation. It seems like I have been a tiny bit more achy since the mammo stress. I know it was not good for me. I sat by a lady who is on Plaquenil for possible RA in our pink gowns. I told her all about Dr. Brown and this website. How uncanny was that? I am still not where I was before, but I am praying I can continue to walk out of this forest and not go backwards. I am still sitting on my Igenex Lyme test twiddling my thumbs with that. I am about to leave town and want to forget about stupid Lyme. I will continue with my generic Minocin 3 days a week 100 mgs until the cows come home! By the way, my breast specialist thought perhaps I had a virus and my gyn was all about continuing with antibiotics to lower ra factor. The only doc not into the infectious theory? You guessed it. My rheumotologist.

DR4/DQ8 HLA, bio toxin illness
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
Positive RA factor was 71 in January 2015 down to 28 as of September 2016
IGG food allergies wheat, egg, dairy
supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
MTHFR compound heterozygous
Igenex IGM Lyme positive
Minocycline 100 BID MWF

[emmaline]

Good to hear from you. I have been under so much stress juggling some heavy things in my life right now. If the Mino wasn’t helping I think I would be far worse. If I didn’t have all this stress, maybe I’d be better, but there are things beyond my control. I am handling it all the best I can because I know how bad stress is for our health. I just need to make it through June without pulling my hair out! Ha! Anyway, you take care.

[Spiffy]

I am hoping your stress levels are down!

DR4/DQ8 HLA, bio toxin illness
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
Positive RA factor was 71 in January 2015 down to 28 as of September 2016
IGG food allergies wheat, egg, dairy
supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
MTHFR compound heterozygous
Igenex IGM Lyme positive
Minocycline 100 BID MWF

[emmaline]

Yes! My load just got a lot lighter after today, actually. I should be able to do some much needed self-care now. I was eating wheat all last week without knowing it, and some sugar, which I consumed knowingly of course. It was my mom & son’s birthdays, father’s day, 32 hours of an MBA class with 8 hours of sitting a day (great for RAers), and Bible Camp, which I directed. I do not believe I could have done all of those things if not for MINO… really, I believe it is working. It’s been 2 months. I still have some bad, even real bad days, but there are more good days. I am so happy to have hope of retrieving my old life. My husband is happy, too! And my little 5 year old is thrilled that mommy can play with him again!

I’ve been thinking about you, but been too hectic to even read the mail piling up. How are you? I mean, really, how do you feel? Is there change you can sense or feel in your body?

To all RAers, Here’s to Hope!!! Bless everyone who made the RoadBack possible. I know it will still be a long road, but not compared to being a prisoner in your own body for the rest of your life.

I met a woman last night who got Lyme and spent 2-3 years imprisoned. Her daughter finally said to her, obviously unable to understand the torture she lived with, “All you do is sit on your A##!” Within a year her daughter had a tick and suffered. Luckily they caught it quick, but she apologized to her mother for treating her so bad. The woman also said her doctor told her that gluten messed up her thyroid. I was off gluten for 1.5 years before I became hypothyroid. Hmmmm. She did have a tick bite and treated with AP only 30 days and did not get better (should have been longer), but said only lifestyle changes helped her get better. It’s important to remember everyone is different. I was so sick of people telling me that lifestyle changes and holistic therapies would be the answer. I am from that world… I worked in Integrative Medicine for almost ten years. I tried it all! I still treat myself with complementary therapies and restrict what I eat and drink. It is an important part, but not the cure by itself (at least for me).

[Spiffy]

Hi! Just wanted to let you know that I am doing a lot better. Not perfect, but better! My energy is better, my outlook is better, my aches/ pains are better. But I am not 100%. I have been able to be pretty normal this summer. We have traveled to visit family and do some fun normal things which I do not take for granted. How are you?

DR4/DQ8 HLA, bio toxin illness
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
Positive RA factor was 71 in January 2015 down to 28 as of September 2016
IGG food allergies wheat, egg, dairy
supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
MTHFR compound heterozygous
Igenex IGM Lyme positive
Minocycline 100 BID MWF

[emmaline]

So glad to hear you are doing good! I feel improvement, for sure. I was under a lot of stress and started eating sugar and gluten, so I had a big flare. I took 2mg more of prednisone for 3 days and got better. Today I woke up with my left wrist swollen and unable to bend, as if it were sprained. It’s almost normal now though. More good days than bad but I need to stay on my gluten and dairy free/low sugar diet and keep taking Boswelia extract and Curcuramin. I bet the wrist thing was a backlash from the increase of prednisone. Maybe. I’m having a lot of fun this summer, but I can’t help think “what if this is the last time I will feel good? What if things go south again and this summer will be the last one I get to enjoy?” The reason is that I went from 5mg prednisone to 10mg prednisone right before I started Mino and now I’m wondering if that’s the only reason I’m feeling better and having more good days than bad. I’m gonna get my notebook and look back at how I was feeling. I can’t remember. I decided to take 100mg mino twice today. Are you still doing once a day on MWF? Good to hear from you and so glad you are improving.

[Spiffy]

So you are taking two a day every day? Have you had any labs done lately? I am still visiting MS family. I did ask my doctor for a script to check my CBC and factor while I am here. I am going to hope my RA factor is down to 35. It seems to fall a point a week. Oh, how I pray it has followed this pattern or more. I have finally gained some weight back. It has been the weirdest thing. I have eaten like a hog! I do not know what I was feeding or where it was going, but it was not sticking. But I am at a good place now, if I can hold on to it. I am still following my diet. Still need to leave off sugar even though I am much more aware, and I do not consider that I eat a large amount of it. Especially trying to gain weight, it would have been impossible to not have a little. I am very dedicated wheat, gluten, dairy, and egg free. I can only hope it is helping in other ways beyond less rashes. I woke up with tense neck muscles. I live in fear they are going to cramp up, but I have taken no meds for it. Hopefully, it will subside on its own. My arms are much better, however I can not apply much pressure on them due to weakness and discomfort especially wrists and elbows. The weakness is better though. I do not notice it so much in my daily life. My left ankle is my most affected right now. It is not painful most of the time. It is not stiff in the morning. Actually it feels good in the morning. It is only when I try to walk normally without loosening my gait that it will hurt. It is on the inside of my ankle and can come across the top of that foot. It has bothered me on and off since November, but has become more fixed. But it does not bother me unless I mess up. My right ankle will have a different type of pain that comes and goes on the outside of the ankle, but is so sporadic it is not worth worrying about. It hardly bothers me at all. My right thumb will sometime feel like it needs to pop. The new thing is my hips get stiff when I ride in the car or sit too long. No morning stiffness in the hips, but they can feel a little stiff after a nap, go figure! My fatigue and brain fog are much better, but it is summer and a lot less stressful. I dread the cold winter. Let me say it again…I dread the cold winter! I am going to most likely go see an LLMD when I get home. I will go over all this with him, and see if I need to be doing something different. I think I told you I did test positive for a new or active infection through IGeneX. I am just very afraid that the Lyme has set me up for a lifetime of problems. I so know how you feel about wondering about the future. I totally get it. I think about it often. When I am drying my daughter’s hair or putting up a ballet bun, I feel so grateful. But I also know it could be taken away from me. I can actually get fairly anxious when I start to think about it. So let’s not. Night. Night.

DR4/DQ8 HLA, bio toxin illness
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
Positive RA factor was 71 in January 2015 down to 28 as of September 2016
IGG food allergies wheat, egg, dairy
supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
MTHFR compound heterozygous
Igenex IGM Lyme positive
Minocycline 100 BID MWF

[A Friend]

@emmaline wrote:

I started Mino Monday 100mg… took it before bed. Horrible stomach pain yesterday with fatigue. Today I’m just so tired I can hardly keep my eyes open and my whole body feels heavy. I know these are side effects, but do I need to lower my dose already or just take it easy? I feel drunk and I’m slurring my speech… I don’t feel safe to drive. I only took one! Any suggestions? This is how I felt when my Dr. took me off of Doxy last summer because he was afraid it was hurting me, but it’s too soon to be “killing off my mitochondria.” I can’t think straight. Please help, I’m feeling scared and desperate. I have a little 4 year old boy to take care of.

Hello Emmaline,

I believe the die-off resulting from the problems being addressed is probably the cause of your side effects above. Hopefully this link, and perhaps other links you may find and read can be helpful in learning ways to flush the die-off out of our system.

http://www.wholeapproach.com/newsletter/archives/2003/06_June.html

Drinking plenty of pure water to flush your system can also be helpful. The “Lemon-Olive Oil Drink” has been found to be helpful. A search of the topics posted should find the directions for making this drink.

viewtopic.php?f=1&t=11461&p=75669&hilit=lemon+olive+oil+drink#p75669

Some people have found that cutting back on the dosage does reduce the amount of die-off, and may lighten the reactions. “Slow and steady wins the race” is something often read about this phase of the treatment.

Good luck to you,
AF

[emmaline]

Thank you AFriend. I did experience the nausea again when i took an extra dose of Mino Friday. I only took the second dose once last Friday. “Slow and steady wins the race” is good… I think I’ll stick to 100 mg once a day on MWF. Tomorrow is 3 month on Mino for me, and I’m just anxious to feel better. But i need to be patient.

Spiffy, it’s good to hear your symptoms. It helps to relate. My outer foot and ankles do that too, and my hips sometimes get real sore like you said. I haven’t had any tests for a while. My insurance sucks and we don’t have a lot of money to pay out of pocket right now. I’m just going by symptoms and keeping a journal.

I’ve had pain lately that radiates through my arms and legs. It’s nagging pain and makes me feel restless and tearful. What tests should i have done when i go back in August? My rheumatoid factor was negative but that was June 2013. Should i check it again? What else could indicate improvement that is a standard test? Thanks!

[A Friend]

Emmaline,
Me again (AF). I just took the time to read the whole link again that I posted up a couple of posts:

Quote with an important link mentioned again below from my/AF’s post above:

I believe the die-off resulting from the problems being addressed is probably the cause of your side effects above. Hopefully this link, and perhaps other links you may find and read can be helpful in learning ways to flush the die-off out of our system.

http://www.wholeapproach.com/newsletter … _June.html

[Note: I’ve copy/pasted this link twice now into this post, but the end of the link will not show up. If you go up to my previous post up above about two posts, it opens correctly there. ]

Emmaline, I encourage you and everyone who has not read the entire information from the “whole approach” link, to read it. Even when we are feeling much better and continuing to make progress, this link/post helps me to better understand what I’m sure I am STILL dealing with to a greater degree — and also gives me some very good guidelines. I have an appointment for a GI procedure very soon, and I believe what has been causing my most recent, and ongoing problem, is my body’s failure to cleanse from the lymph system. This link/article re-posted above certainly points me to that. I have some clear signs (once I learned what the signs are) that the lymph is probably involved. The lymph system has never been on my radar, but you’d better believe since my very involved dental revision just over a year ago, I’m ready to bet on that “horse” named “Lymph”!!!

Good luck to you all…
AF

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