Emotional on AP?

[Spiffy]

Is it literally just in my head or am I more emotional on my days in between antibiotics? I do not know how I can have a good emotional day, and then the very next day…not. What got me today was me complaining about my ankle to my mom. She casually says, “Well, I hurt all the time, your brother hurts all the time, Lori…his wife…hurts all the time.” Then I said, “I bet if your best friend called saying her back hurt, you would not start comparing pains of others with her. You would be compassionate and respectful of her feelings.” Drum roll….her answer….”Well, in the beginning I was with you, but it has been five months!” My mother has been my most ardent supporter along with my husband and children. I know the role of caregiver is tiring. But it also shows me a glimpse of my future if I am one of the few that AP does not help. People eventually get tired of complainers….even if they love them. She has been in the trenches with me. My husband gets some respite at work and the kids are in school. She has helped me so much. I have been given a disease that I am going to have to transcend my body’s pain and fatigue. Beyond that, I must learn to keep my mouth shut. Nobody really wants to hear complaints too much or too long. People are so used to people getting sick and if it takes more than two weeks to get better…well, that is just too long. If my mom can feel this, there is no hope for the rest of the world. To top it off a red bird ran into my car and was killed this afternoon. Had to be a redbird. Had to be today. I seem to have more off days on my AP off days. Is this just coincidence? My Igenex results will be in Monday after a three week wait. If our diseases teach us anything, they teach us patience! To top it off, it seems like my eyesight has been affected by today…maybe from crying? And my arms have been achier. It is so weird how emotions are so tied in to our physical selves. My ra factor probably went straight up today. What is so funny is that the book I am reading says to be positive. Ok. Maybe tomorrow.

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]

Spiffy,

I want to reach out and hug you! I will write more later tonight.

[emmaline]

Sorry, sounds like a tough day. I’m sure your mom is a great person and has been very helpful, but it feels like nobody in our everyday life can really understand the kind of pain we live with. I used to think I had “the type of RA that would never get that bad.” I thought that having a negative rheumatoid factor meant I wouldn’t become disfigured, and so I was okay living with it. I don’t know that I could have handled it emotionally if I knew the truth of how bad it would get.

You said before you don’t really tell friends about your RA. It’s weird when I do because nobody knows what to say. If I do say something about how bad I am feeling one day, I get silence. People don’t know what to say. It’s not that they are sick of it because it may have been the first time I had said anything to them. I’m sure my husband and mom are sick of hearing about it, and it is hard because who are we supposed to lean on but family? (so thankfully for RBF)

I had a pretty bad day myself. Yesterday I took Mino, then had someplace to be all morning and completely forgot to take my 10mg prednisone ( I have to eat before I take it and waited 2 hours after Mino to eat). Last night I hurt really bad and it was hard to fall asleep, but I didn’t realize I had missed my dose of steroids. This morning I was horribly reminded just how disabled I would be without them. Even though I took my dose this AM and feel better, it terrified me how much pain I was in and how crippled I was… just this morning! Every finger and toe felt broken, my knees and elbows hurt so bad, my neck was stiff and my hands were typical claws. I could barely move and the pain was so intense. I have been thinking about when I could begin to back off the prednisone, but I think the answer is not for a while.

I was reading The New Arthritis Breakthrough again today (for inspiration) and I’m wondering why people mostly start with 100mg Mino M W F instead of 100mg 2X/day M W F like in the MINO Trial? I will have to go back and look for the answer… can’t remember.

I hope you have a much better day tomorrow.

[Spiffy]

Bless you, my friend. Yes, it says in that book to titrate up to that dose when possible. Maybe I should try it. I think what keeps me from it is possible side effects and hypersensitivity. I do not want to become allergic. Such a guessing game. You have a great day!

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

[Spiffy]

Actually, I think in the trial they used it twice a day everyday. I am sure there were more side effects, and that it also was not necessary. Sometimes I worry the way I am doing it, it is enough to bring them out…but not finish the job. People are so lucky when they find their AP sweet spot! Yes, that is a great book. I am also relishing Poelhman’s book Arthritis The Infection Connection. I am highlighting anything of interest and turning down lots of edges to bookmark. I do recommend it.

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

[Spiffy]

And, remember, as you want to lessen your steroid you will do it in a slow controlled manner. What you experienced also involved a rebound effect of sorts. You just forgot, but your body did not. Do not let this worry you for the future. Take care, Emmaline.

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

[lynnie_sydney]

Hi both – there is a good summary on the main site (at the link below) of how the the medication is taken and the need to take into account individual patient responses. It’s worth reading through it. And the fact that more is not always better – less is sometimes more. It is counter-intuitive to the way most of us tend to think about the actions of medications. Plus, it talks about when a dose is too much, how a week’s washout can work to re-set and with the patient then re-commencing at a lower dose.

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184

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)

[enzed]

Hi Spiffy. Looking back on my early days with AP – over 2 years ago now, I had to learn to ‘coast’ with the powerful reactions that we all seem to have when starting AP. It does get worse before it gets better, well, it sure did for me. Please take Lynnie’s advice and read the information about the advantages of very low, pulsed dosing on AP. You might be taking far too much and experiencing extreme herxing from die off.

But I see you are taking turmeric – check out the thread called ‘Tumeric’ because it’s not the benign spice many people believe it to be. If you stop taking that, it may help. We have a tendency to panic and its tempting to rush out and buy and consume anything we hear about. We do it because these arthritic diseases are scary and we want to get better REALLY FAST. But we need patience and we need to research the effects of any extra supplements, spices etc before we take them.

One of the great things about this forum is that its a safe place to air our fears, our miseries and to get support when our families are worn out from listening to our woes. Sometimes we need to reassure them that AP treatment takes time, and that there is often a need to ‘tweak’ the dosage to get it right so we can handle the die off and related herding. I wish I’d started on a much lower dose than I did. But its easy to be wise in hindsight!

You’ve come to the right place. I look forward to reading your updates on your progress as you sort out your AP road.

[jasregadoo]

I’m glad you posted this. I’ve been feeling worse for the last week or so, after having felt better for awhile. Frustrating, and of course I try to figure out whether I should increase my dosage or not. I went to the rheumatologist today, and thankfully she is supportive of my desire to try AP. She said she thinks I’ll have to start methotrexate at some point, though of course I don’t want to. But at least she’s not pushing it on me or angry, like some doctors I’ve read about here and elsewhere.

Not that I necessarily found any answers here today, but it’s nice to commierate sometimes. Hang in there guys.

[jasregadoo]

Also, regarding your prednisone, I know that it can be dangerous to stop taking it suddenly, as your adrenal gland is not used to producing it anymore if you’ve been taking pred, esp more than 5mg a day. I don’t know the symptoms of adrenal insuffiency, but feeling like crap is likely one of them. Hang in there, take your pred, and taper off slowly when you are able. I took 20mg a day for a short time (1 week), then 10 a day for a week, then 5, then 2.5, then 2.5 every other day. Slow tapering.

[Dawn]

Spiffy, I would just like to add my support to the comments by others in the various adjustments on meds you’re taking.

Additionally, depression is very present for the early period for many reasons, at least 2 being your general overall health at this early stage coupled with the miserable feeling that you’re trying to lasso a hummingbird! All I can say on the note of seeking support: do it from others who suffer the same, or similar, types of rheumatic disorders. For others in your life – even your beloved mom; just telling them your feet are very sore, your shoulder has been killing you since you got up, etc…is sufficient to usually elicit a supportive response because they can identify with that. I ride horses, I cannot begin to accurately convey the feeling to anyone who has not, or even who did not ride them on a regular basis. So I don’t try unless they really appear deeply interested, even then its alot of analogy or similes. That has been my experience.

Lots of support from like-minded, and like-situation human beings here on this forum. You will encounter others in your day-to-day life where their 5 minute supportive conversation can last you for weeks while you go off to “lasso a hummingbird” because it proves to be some or mostly helpful instead of none.

Please do not give up, the treatment works for many and especially those with open minds as they put the staple low-dose antibiotic in place, and move along over time to find their personal adjustments along the way with (hopefully) a caring and supportive doctor, fellow-sufferers experiences, educated and adaptable holistic professionals coupled with their own careful research. It is so worth it, and think: what’s the alternative anyway? Just let pain envelop you and do nothing? Too many documented occurrences of benefiting to go that route!

Lots of love and hugs,
and….Fellow RA Sufferer,
Dawn 😉

DawnF

[MLTelfer]

Wellll….as many on the board know, I don’t actually have PsA…my son does. I wish I could offer silver lining and be qualified to speak to you, but all I can do is offer my point of view. I wish I had more faith but I am not a religious type, but I will share what Dr. F told my son. He told my son that God chooses those that are the strongest to carry the burdens. That crushed me and enveloped me with hopelessness but lifted me at the same time. He is stronger than I ever was!!!!!! Please hang in there and remember, you don’t have to pass every test every day.
This experience has changed me in many ways. Through my son I have learned and grown and what a terrible way for a person to learn lifes lessons…..through their childs suffering. I use the experience to support others who have burdens to carry and admire you and otherrs
Be strong and many good days are ahead for you and my son.

[Spiffy]

I really appreciate everybody’s thoughts and reflections! Thank you for your strength and words of encouragement. MLTelfer, you are so precious. You are helping your son in this fight. Anything that affects our children doubly affects us. I would so much rather it be me with an ra factor as opposed to my daughters. Stay in the trenches with him. He needs you so. Dawn, your phrase of “lassoing a hummingbird” is a perfect way of explaining this nebulous, new world. I think of it often. Maybe we should picture trying to lasso a rabid dog. Ha! Ha! I am off to the rheumy first thing Friday. I will be redoing all my bloodwork on my Friday. I hope my factor will be 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

[Author]

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