Feeling hopeless

[ablegirl]

Just wanted to post as I am feeling very disheartened.

I started on Minocin July 2011, so have been taking it over a year. I have felt a lot better, so much so that July this year moved into a house on my own with my small son. I had previously had to live with my parents due to the severity of my RA (moved in with them Oct 2010). My parents live in the welsh countryside and I knew that for my own well being i wanted to move back to city life if ever it became possible. So in July this year achieved my goal and I am now living near Heathrow, London. My son started at a new school and I have been able to take him and pick him up from school (getting up at 7.00am) which was previously impossible. it is a struggle but I have been doing it. i don’t walk very well but I am at least independant again. I have regular blood tests, every couple of months and although there has been improvement I have never experienced anything resembling normal levels. In June of this year my ESR was 30, CRP 10, RF 471 the lowest levels in 4 years. Although when I first started Minocin my ESR was 43, CRP 18, RF greater than 700. So although there has been improvement over the last year it hasn;t been dramatic but I have felt better!!! Anyway to try and cut a long story short, I obtain my Minocin from Europe via my ex husband due to him not coming to collect our other son after the summer holidays when he was meant to be bringing me a supply I have now run out. So I have not taken anything for two weeks and I cannot believe how bad I am. Sore in every joint cannot move. I just had bloods done last Wednesday and ESR is back up to 41, CRP 17. I had only been off the Mino for a week and a half so not sure the increase is entirely down to stopping Mino but with each passing day not taking it I am getting worse.

I am desperate as I have so much joint damage already from 15 years of this disease. I have just started a complete Paleo diet and am looking out for the Postman every day so i can get back on Mino. My Mother has come to stay again as I cannot manage, my independence didn’t last long!!!

Sorry for the long story but does anyone have any ideas why the Mino hasn’t lowered my bllood markers more, not lower than ESR 30. Also has any one stopped Mino before for a short while and had such a backslide. is Mino just having an anti inflammatory effect on me without actually effecting the progress of the disease.

Any support or ideas would be appreciated as I am feeling so hopeless.

[lynnie_sydney]

ablegirl sorry you are feeling so disheartened and in pain.

My sense is that the stress of moving home (that’s a biggie whether welcome or not) and all the newness in your life has played a big part in what is happening – those kind of stressors can really depress our immune system. Two weeks without mino wouldnt normally have such a great effect. Washouts of up to 4 weeks would not usually affect progress. However, all your recent stressors will probably be causing a rebound effect.

As to your improvements – both in blood work and in symptoms – they are good. This is a slow road to greater wellbeing. 12 months is not long in the overall scheme of things and all is moving in the right direction. You are doing well. Be kind to yourself, relax and detox as much as possible to see you through this time.

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)

[Valsmum]

I am sorry you are feeling so bad, I wish I could help you. I have young children too and it is so hard to have RA and care for them. I know what you are going through.
The thing that helped me the most is juicing greens to get out of that horrible inflammation. I would juice some celery and cucumbers because the enzymes in the juice replentish the ones naturally found in your gut. I don’t know if you have a juicer though. I would eat some salads for just a few days and see if your inflammation quits down. I had numbers just like yours so I know you are in a lot of pain. I am one of the ones abx did not work for, but it seems as though they are working for you since you are feeling so crummy without them.
So for me, a diet of raw fruits and veggies minus the nigtshades and occasional chicken and fish works for reducing my pain. I finally got normal labs back after 3 years of awful labs. It hard to give up grains, sugar and dairy but even harder to live in a lot of pain EVERYDAY.

I’ll say a prayer for you and your son today,take care
sheri

[DragonSlayer]

Hello, ablegirl:

First, I hope that You are taking enough EFA (Essential Fatty Acids); a few teaspoonfuls of EVOliveOil daily are good, but especially borage seed oil (or GLA–from any source equivalent to 2g/night during flares). Also enough trace minerals and vitD. And I cannot help but think You could be misdiagnosed. In the early stages, AS and RA look very similar, so if there are any digestive issues and pains are asymmetrical, it could be AS. Here are some things to help differentiate them by common early symptoms of AS. The HLA B27 antigen test should be performed if You believe that You have AS, but in any case, I have seen anti-inflammatory diets help and Dr. Mercola recommends excluding starches.

Carol Sinclair (Cotswalds) wrote her book “The New IBS Low-Starch Diet” before she was aware that she had AS, and the foreword was written by the leading expert, Professor Alan Ebringer. I have not purchased his book on RA, but I will when his new book on AS is available from Amazon: “Ankylosing Spondylitis and Klebsiella.” He believes RA is due to an occluded UTI of Proteus mirabilis, although I can only attest to his accuracy about AS. And he does not recommend very much beyond knocking out this germ and some slight dietary modifications including about 1 ounce per hour average concord grape juice or real unsweetened cranberry juice as these flush out the urinary tract.

Good Luck, whatever You try, but always remember that we are here and the treatment does exist that will make You healthy again–keep searching and do not be discouraged!

HEALTH,
John

[ablegirl]

Thank-you all for your replies. My life has changed so much that I am unrecognisable as the person I was. I have been battling high inflammation levels for the last 4 years. After a short course of steroids both intra muscular and orally my disease level is so high and I am at my wits end now how to lower inflammation levels and RF Factor. I have just started a very strict diet so I hope this may influence things. I have had this disease a long time since 1997. I was lucky at the time as my husband was ahead of his time with his thinking about diet and how it affects our health. He is Greek, so for a large part we lived on a Greek Island where our diets were very good which I’m sure kept things well for me. I had very low inflammation levels during this time. Since 2007 and the collapse of my marriage things started to slide and after taking cortisone in 2008 I am in a very different scenario with my health. I am in so much pain and now have so much deformity that I am miserable and consequently not a nice person to be around. I am slowly pushing and alienating everybody close to me. No body can understand what it is like to loose your life whilst everyone elses lives are carrying on. Sorry to ramble on asI know I must try to stay positive so that I can concentrate on improving things. I have just started taking Omega 3, 3 capsules per day, and of course with the very strict diet I pray things will improve. I think that my adrenal gland has been damaged from the cortisone, so I think I am not controlling inflammation in my body naturally. I know that diet can have an anti-inflammatory properties so I know that may help but I’m not sure it will be enough. I definitely do not want to take any further cortisone but if my adrenal gland has atropied what could I do. I am worried that no amount of diet changes will help me.

I am commited to trying dietary measures but I am very scared that this isn’t going to be enough for me and all the time I am experiencing more joint damage.

All the time it is hard to resist conventional drugs whilst I do not seem to be winning the war.

[A Friend]

Ablegirl,
I saw your post yesterday and sent you a Private Message (PM). Since I believe you may be new to the Board, I’m not sure if you are familiar with the Private Messages system. If not, you can look at the top-right of the screen and see you have a PM.
AF

[Maz]

Ablegirl, just wondering, but are you aware that there is a very experienced AP physician about half an hour’s drive from you, in Guildford, Surrey? He offers both oral abx and IVs and received training at Dr. Brown’s clinic shortly after his passing. Is there any way you can get to this doctor? If you don’t have his contact info, would you like me to send it to you in a PM?

Dr. Brown often remarked that it could take 2 to 5 years for RAers to reach remission on his protocols. Your labs are reflective of a positive early response, so as Lynnie has already shared, you’re well on your road…you just need to find a way to continue on it.

In the meantime, there are so many things you can do to support the therapy, including getting back on the diet wagon, detoxification and using anti-oxidative therapies. It is circulating free-radicals caused by the oxidation due to inflammation that results in tissue damage. So, doing anything anti-oxidative will help to lower inflam while also using detox methods to flush out wastes. Have you been able to try any of these measures? There is also an integrative lady doctor in Banstead, Surrey, too, who may be able to help with this side of things.

Let us know how we can support you…there are lots of experienced APers here all willing to share what has worked for them. Hang in there! 🙂

[Anonymous]

Hi ablegirl,

I’m kind of new around here, but I just wanted to say hi and let you know that I totally understand what you are going through. I barely remember what it was like to have energy and not be in pain. It just sucks. I’ve read that a course of IV’s can help people sort of jump start the process, maybe it would help? I’m trying to get a course of IV’s for myself, but I’m having problems with doctors. Maz says there’s a doc near you that does IV’s, so you’re already having better luck than me!

[Author]

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