Newbie questions

[girlga]

Hi there

I discovered this site a few days ago and am very hopeful AP can help me.

In 2003 I got some pain under my right foot (the pad) when I’d first stand on it but then it went away after a few steps. Over a several month period it took longer and longer for the pain to go away until it was there all the time causing me to limp. Despite going to all kinds of specialists no-one could work out what was wrong and by this time my right knee had swollen up and hurt terribly, I personally think the knee was caused by not putting any weight on that leg because I was limping so that knee stopped having to work. Of course the limping also gave me nerve pain in my left hip so I ended up hobbling around like an 80 year old. Because I had scalp psoriasis since I was around 19 doctors instantly diagnosed me as having PsA. I never really believed them because of my limping theory. My right knee never got better.

Throughout the next few years I had only the swollen right knee as well as occasional periods spanning weeks where I’d have the flu-like symptoms of full body ache and fatigue. I’d need to rest after doing anything like taking a shower. I’d take Panadol (Tylenol) and it would help somewhat.

Last year in April I gave birth to my second child. Soon after my knee flared really badly and I got it aspirated – something I’d been doing about once a year since 2003. Worse still the body ache and fatigue came back and have been with me constantly since then. A few months ago I took a 10 day course of Prednisone and felt like a new woman – almost wanted to cry at how wonderful ‘normal’ felt. Of course within a few days of stopping the aches and fatigue returned.

Then several weeks ago I got a bad cold. I had mild fevers in the evening and a lot of mucous. My daughter also got sick as did my mother who was hit really badly. A few days after it started I decided to go to the doctor to get antibiotics as I had sinusitis and was worried it would get worse. He gave me a script for Cefuroxime which I took even though by the next day the cold was significantly better. What was interesting is that within a few days my body ache and fatigue were completely gone and I had a little over 2 weeks with no body ache or fatigue and only mild joint pain in my feet and hands. Since in the last 10 months the only other time I felt this good was when I had the Prednisone it got me thinking. Unfortunately a few days ago the body ache and fatigue returned (and my terrible mood with it) but I wonder now whether antibiotic therapy could help me.

I’ve read a lot of the stories on rheumatic org and I think my condition is quite different to most fellow PsA or RA sufferers. I don’t have the excruciating joint pain they describe. I have mild joint pain on my feet and hands but only when I put pressure on it. If I’m just sitting there, nothing. This doesn’t bother me – I could live with it. My big problem is the flue-like body ache and fatigue. That’s why I’m convinced what I have is an infection. I’ve had colds before where I felt exactly the same.

My rheumatologist wants me to start methotrexate but I haven’t yet because I’m still breastfeeding. I am reluctant to go on something so strong but don’t know what to do – I cannot live a productive or happy life the way I am, that is clear. I have read a bit about antibiotic therapy and want to try.

I have a few questions.

1. How common it is for people to go into remission and stop the AP therapy and no longer need it?

2. What makes you sure that your good results weren’t going to happen anyway? I guess I am very naive and can’t understand why AP therapy wouldn’t be one of the first lines of treatment for these diseases.

3. Have there been any studies done on the safety of long term AP? Because it is a non-conventional way to use antibiotics I imagine there would be no data on this. If something can turn your inner organs, bones, teeth brown, is it having other effects on individuals in their old age that no-one knows about.

To be honest despite whatever answers I get I’m still going to try AP therapy. I’ve been awake since 4am, I have a slight fever, I feel like a truck has hit me and I cannot fathom a life like this. Having the two weeks of feeling great has once again reinforced how bad my condition is.

[nspiker]

Hi girlga,

Welcome to the Roadback! It’s amazing how many people find us when they take antibiotics for an unrelated illness, and find that their autoimmune disease or arthritis resolves or improves. I feel compelled to answer your post, because your story sounds so much like mine. Just like you, it was after being treated for an e-coli infection with Amoxicillin that the pain in my leg and ankle resolved. I knew there was a connection 😉 .

I also had pain in my foot, for me it was my left foot, with swelling and edema in my foot, ankle and knee. I can relate to your “limping” around. I remember running into acquaintances who commented on my limping and asked if I’d injured myself. My left ankle was 1/2 inch bigger than my right from swelling, and my leg was very tight. My Rheumatologist diagnosed it as Reactive Arthritis.

I asked my primary doctor if he could prescribe additional antibiotics, since they seemed to really help my leg pain. He agreed, but changed the prescription to Ceftin. Just like you, Ceftin was a god-send, and as long as I took it, the limping and foot pain resolved. If I forgot a dose, it immediately returned. I was more convinced than ever that antibiotics were the cure. During this time I also would run a low grade fever at times. I felt lousy, and achy and had a deep pain in my left arm.

I started AP and was convinced that antibiotic protocol was the answer. Unfortunately, after months of using minocin my symptoms did not improve. There are many here who pushed me to get tested for lyme, and thank goodness I did. There are many infectious components to our disease. It seems to be more complicated these days, and some can reach remission with Minocin alone, and others need different antibiotics to target their particular infection. I have been treating lyme and babesia now for a year and four months, and have improved by 75%. I still have a ways to go, but am so grateful for those here who guided me in this process.

I don’t see any harm in taking Minocin. At the very least it acts like a DMARD, and yet has such significant tissue penetrating capabilities. My suggestion is to get started on AP and see if your symptoms improve. I also would suggest lyme testing, because your symptoms sound more infection-based. Heel pain and/or foot pain can be a symptom of bartonella, a co-infection of lyme. I have never been bitten by a tick, that I know of, but somehow ended up with lyme. Lyme tests are historically inaccurate, but Igenex is the standard for lyme-testing.

Symptoms of bartonella:
Bartonellosis is often mild but in serious cases it can affect the whole body. Early signs are fever, fatigue, headache, poor appetite, and an unusual, streaked rash. Swollen glands are typical, especially around the head, neck and arms. Burrascano suspects bartonellosis when neurologic symptoms are out of proportion to the other systemic symptoms of chronic Lyme. He also notes gastritis, lower abdominal pain, sore soles, and tender subcutaneous nodules along the extremities. Lymph nodes may be enlarged and the throat can be sore.

It certainly sounds like you have found a connection to the cause of your PsA. I would pursue your instincts, and look for what infection basis is at the root of your symptoms. Traditional Rheumatologists po-poo the infectious basis. Some even feel that antibiotics are more harmful than immune-suppressing drugs, which I can’t believe. You have to follow your own inner guidance, and do what you feel will work for you. That’s how must of us found this site, and many are off enjoying their life, and renewed health!

nancy

[Eva Holloway]

girlga
welcome to this site but also sorry you had to find us. Like many of us I had been for a short time on the heavy stuff such as methrotraxate, then for a year on cytoxen, then to Cellcept, Enbrel and all the time on Prednison starting at 60 mg a day. After taking all that stuff for about 3 1/2 years I found this site and the antibiotic protocol. I started January 2008 and I was very ill, was always very tired, could hardly walk, used a wheelchair, lost lots of muscle in the midriff and in general was a mess.
Yesterday I posted my last results of my blood test taken last week and they are almost back to normal. My lungs were so bad (interstitial pulmonary fibrosis- from RA and DM), now my lungs are about 90 % healed and my ct-scan and pulmonary function test is getting close to a normal lung.
Yes it has taken me three years to where I am about now but I don’t think I would have made it this far with the other medication from my rheumy. Most of the antibiotics are low doses and if you take them MWF then they really a small doses.
I have a friend that is n remission after five years and she couldn’t get her antibiotics for several months, she stated the she started to feel bad again, so after talking to the makers of minocin and the pharmacy she finally is back on a 50 mg dose MWF. I read several other people saying that they had to stay on the antibiotic. Sometimes you may have to change the meds, I am actually on two antibiotics so I alternate days.
Another thing, get the book “The New Arthritis Breakthrough” written by Henry Scammell about Dr. Brown. You can get it at amazon.com. Some of the books are used and you can get them for a lower price. Read it, it has lots of good information in it.
Eva 🙂

Eva Holloway

[chrysalis]

Hi wanted to tell you how I decided to do the AP after reading all the books referred to on this site plus 50 more, talking to lots of people with RA on methatrexate, getting terrified reading arthritis sites, realising I had isolated symptoms and signs for years. The most basic idea for me was that the heavy duty medical drugs suppress the immune system-is’nt that the thing that protects the body?. This did not make sense and it is the idea that kept me going, I liken it to putting a bandaid on a boil. I don’t know how long I need to be on this, I just know I can now use my hands and I can walk without limping-last week I used a can opener, first time for a year because of the pain and weakness. I think that instinct will kick in when the fear and pain become less because the pain and restriction becomes a future prediction in the mind and that is hard work, you can only do the bit in front of you. good luck chrysalis

[girlga]

Thank you everyone for your replies. This morning I woke at 3am with a fever, terrible body ache, head that feels dry stuffy and battered. I can’t wait until I see my doctor tomorrow. I’m still breastfeeding so not sure if it’s safe to start AP. I thought about 2 others instances when I had a few pain/fatigue free days last year. One was after surgery for a breast abscess when they were giving me IV antibiotics. The other was the few days after gall bladder surgery. I’m not sure if they gave me antibiotics during the surgery but intend to find out. I feel so terrible now, definitely the worst ever. 😥

[Valsmum]

Your story sounds so familar, because I was breastfeeding my new baby too and I told my rheumy I could not take metheltrexate. I wish I had not started prednisone because I have had the hardest time weaning off of it. That is why I am writing you, I wish I had done some reading, but my RA hit me fast and hit me hard. I was scrambling to find some relief, but now a year and a half later I am at 5mg and trying my hardest to wean and it hurts really bad to do it, but I know it’s the best thing for me, I don’t want soft bones and cataracts. I’d also like to do a water fast and it seems it’s not good to do one on prednisone and other strong medications, so that is my motivation too. I want to be healthy for my kids, I love taking them places and watching their soccer games in peace not pain. I hope you get some relief soon & congrats on the baby!!

[DragonSlayer]

Hello. girlga:

1. How common it is for people to go into remission and stop the AP therapy and no longer need it?

2. What makes you sure that your good results weren’t going to happen anyway? I guess I am very naive and can’t understand why AP therapy wouldn’t be one of the first lines of treatment for these diseases.

3. Have there been any studies done on the safety of long term AP? Because it is a non-conventional way to use antibiotics I imagine there would be no data on this. If something can turn your inner organs, bones, teeth brown, is it having other effects on individuals in their old age that no-one knows about.

1) Sorry, I do not know. I am there right now, but I know that one day in the future I might need AP again.

2) Because although our diseases are cyclic in nature, on the AP eventually there is far more amount of time spent in remission instead of relapse. In the case of AS (mine) it is a night-and-day thing–NO relapse after 12 years.

3) Yes, people with psoriasis have used AP long-term and there is some information, albeit scant, about most antibiotics but they are still drugs and as-such are a two-edged sword.

I would have guessed Your gender because women with AS (Ankylosing Spondylitis) have a much different presentation than men. My mother died from it because it was not diagnosed and she had a terrible lifestyle (smoking/drinking/eating starches), so there is not enough awareness of this disease in women and the most common misdiagnosis is fibromyalgia.

Carol Sinclair’s book available in UK: “The New IBS Low-Starch Diet” with foreword by Professor Alan Ebringer explaining the disease mechanism could help very much. HLA B27 test will confirm diagnosis, but even if negative the dietary regimen should help especially in conjunction with AP; verify this on the Mercola site–same story, more or less.

HEALTH,
John

[girlga]

@Dragonslayer – Congratulations on your long remission. That gives me hope.

@Valsmum – Sorry to hear you are having a hard time weaning off Prednisone. I only took a 10 days tapered course but it helped so much. I was very disappointed at how quickly the effects wore off when I stopped taking it. How long have you taken it for? My doctor tried to convince me to take a longer 3 month course until I weaned my daughter. I’ve been so tempted. Can I ask what makes it hard to wean off it? Do you get increased joint pain or is it something else? I’ve heard it can be hard to get off but I wasn’t sure what the reason for that was?

[lynnie_sydney]

Can I ask what makes it hard to wean off it? Do you get increased joint pain or is it something else? I’ve heard it can be hard to get off but I wasn’t sure what the reason for that was?

girlga – the reason it is so hard to get off is that, after a period of time, the adrenals stop producing the steroids that our bodies naturally produce. Without any naturally produced steroids, pain can become unbearable when it is tapered and it also cannot be stopped immediately (it has to be tapered) because we need those naturally produced hormones to live. This section of a Weston Price article explains it better than I do: Lynnie

The side effects of cortisone, prednisone, and similar drugs are legendary. They include diabetes, osteoporosis, edema of the face, mood swings, stomach ulcers and, very importantly, adrenal suppression. In other words, your own adrenal glands shut off their production of these valuable hormones. Why not, since they essentially have been “told” by the prednisone that the adrenals are no longer needed. This bargain, then, becomes a nightmare as the effectiveness of the drugs wears off, side effects become more serious and the patient is unable to stop taking the medication. https://westonaprice.org/ask-the-doctor/228-steroid-drugs.html

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)

[girlga]

Thank you for your explanation on Prednisone. I never knew that the pain experienced from weaning would be any stronger than the pain experienced prior to starting Prednisone. Now I understand why people have such a hard time stopping. Now I am even more convinced I don’t want to restart Prednisone.

I am counting down the hours until I see my doctor tomorrow. Do you know of any antibiotic for AP therapy that is safe while breastfeeding? I am desperate to start but can’t see my daughter weaning easily.

[Valsmum]

Hi girlga,

As Lynnie mentioned above the adrenals stop working once you have been on prednisone for awhile. For me when I taper too fast my whole body is sore and achey. I also get pain in joints that I haven’t had trouble with for awhile and I get leg cramps. I even noticed if I taper too fast I am more irritable, I don’t need that. I try to be patient and take it slow so I won’t have these side effects so badly.
To answer your question I have been on prednisone for a year and a couple months, but I am excited because I am down to 5 mg and my knees look great and so do my wrists, however I have one stubborn thumb, it looks twice the size of the other one and the last few days it has been throbbing a lot. I also have to figure out a plan for my lower back/sacrum it’s been so painful lately as the other joints are improving.
Take care,
Sheri /
Valsmum

[girlga]

Valsmum, it sounds like you are on the right track. I wish I had some advice regarding the lower back pain. I have it quite bad at the moment and the Tylenol which can normally temper it isn’t even touching it. I do find if my husband puts pressure on my back it helps temporarily and it seems the warmth helps too. Out of all my pains, the lower back pain would have to be my most hated. Good luck.

[girlga]

I’m very happy to say my doctor wants me to give AP a go. I predicted she would and I’m glad she didn’t let me down. The only problem is she seems to know nothing about it. I feel like I’m going to be driving this. Since I’m breastfeeding I won’t be starting with Minocin. She suggested I try Zinnat (Ceftin) again but when I asked about doses she didn’t seem to have any suggestions. I’m going to be ordering the book in the next few days – does it list recommended doses of other antibiotics? Can anyone help?

[lynnie_sydney]

girlga – if you are going to start with your GP, then strongly suggest you educate yourself as much as possible about the approach and protocols. The Scammell Book is a great start, lots of info on our main site (click on blue header above to access) and in the FAQ section at http://www.rheumatic.org. Lynnie

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)

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