Remission without conventional drugs

[Krys]

@lemons wrote:

I think it was a fleeting placebo effect

Maybe it was, maybe not.
Each return to abx after a break may feel different.
@lemons wrote:

I must say though,on the three few days I have taken the minocin my head felt clearer and Im more alert. What is brain fog ? Is it the sensation of being slightly distanced from reality and the feeling of, sort of being trapped in your own head ? That’s the best I can describe it 😕

It sounds like slight derealization, typical in Lyme. http://www.ladderbridges.com/lyme-disease/derealization/
For me “brain fog” was very descriptive of how I was feeling. It literally felt like the brain was enveloped in something heavy. I could not think, I could not remember, the recall was hugely impaired. The brain felt dull, very confused, somewhat like in a huge stupor. At its worse, talking was difficult, coming out in stutter, unfinished sentences (I could not remember what I was saying, or could not remember the word, or realized I was making no sense at all). It was reminiscent of a deep shock when one may not remember one’s name at the moment. And it did happen to me 4 times that I could not remember my own name: once after a deep shock, 3 times Lyme-induced.

@A Friend wrote:

True recovery (unfortunately) involves much more. We must listen to our bodies, then read/learn/experiment with food choices, needed vitamins, minerals, etc. Our illnesses and help for them can be almost as varied as our genes… and there are a lot of them, and the way we are put together.

I’ve experienced the truth of AF’s advice many times over. And what helped, like miraculously helped, at one moment, would often be only slightly helpful or no noticed effect at other times. 🙁
Outside of diet (no gluten, no dairy, no particular for me food triggers), some enzymes (for me green onions, collard and mustard greens, cucumber), some minerals (e.g. magnesium in big amounts), some amino-acids and some supps were always helpful. At one time, trying the taste of 4 different honeys produced an immediate total well-being. I kept trying to repeat it many times later 😆 but it did not work. 😥
Buhner in his book on mycoplasma stresses that replenishing the nutrients scavenged by the bacteria is crucial, as the bacteria is very good at getting what it needs and depleted body will definitely show depletion in exacerbation of symptoms.
May your road to healing be smooth and may well-being keep deepening!
Krys

[Maz]

I can relate to your description of brain fog, Krys.

There’s a good article on the main site that describes the symptoms of cognitive dysfunction in rheumatic diseases quite well. There’s a lot of overlap with Lyme, too, and can be amplified when both are experienced together.

http://roadback.org/index.cfm/fuseaction/education.display/display_id/189.html

The website has some really interesting articles, so worth browsing them when you have the chance. Hopefully, once the new site is constructed, these will be a lot easier to navigate.

PS. I just noticed my post crossed over with John’s above….just alerting you to this, so his post isn’t missed. 😉

Lemons, here’s John’s testimonial on the main site that he kindly prepared for us recently:

https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/515.html

[bonnielou]

Here’s the point Lemon — to reach the highest level of health and quality of life you can achieve. Antibiotics are conventional drugs as well; I don’t think they are any safer than the plaquenil I am taking. I have had very few side effects from the minocycline (initial stomach upset, only modest blue patches, no sun sensitivity, no minocycline induced lupus). I have had no side effects from the plaquenil except stomach upset in the beginning as well.

I cut back on the plaquenil substantially over the years, to the point where I took one 200mg pill per week, just to keep a very low dose in my bloodstream. After five years I started getting inflammation again in my right hand, and have some bone erosion as a result. My conventional rheumatologist wanted me to up the plaquenil again and start methotrexate. I finally went to Dr. F in California. He increased my minocycline and said it wouldn’t hurt to increase the plaquenil a bit as well.

And so I did. I probably take on average one 200mg plaquenil per day now –as I am not as careful about it as I am the minocycline. But here I am, almost at my 6 year AP anniversary — and I feel good. I work a high stress, many hour job as a tech VP, I run around with my 6 adult children, 2 young grandchildren, 90 year old mother-in-law, husband, and 80 pound dog. And I teach yoga one night a week for the pure pleasure and joy of being able to move my body again.

That doesn’t seem like such a bad deal to me, even if I am taking a conventional DMARD. It’s okay. I’m content with this compromise. Of course I would like remission — but I have friends without RA who have more complaints and pain than I do.

I am sorry you got beat up on the other RA board you visited. That has been a common problem as long as I have been here. People find the idea of infection and antibiotic therapy very threatening — it would mean they can’t trust their doctor and the established medical community, and they have too much invested to accept that. So they chase you away. But they can’t trust their doctors and the established medical community — that’s the truth. The truth is hard.

So — experiment. Research. Listen. Find the solutions that work for you. But don’t be too discouraged if that solution includes plaquenil, prednisone, methotrexate, or (heaven forbid) a biologic. Just get well – whatever it takes.

Enjoy.
Bonnie

Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

[lemons]

Thanks Bonny but I still feel that if I was to be taking methotrexate alongside Minocin in years to come, me seeking the help of an AP doctor in the UK would’ve been pointless.

[lynnie_sydney]

lemons – we all tend to develop different perspectives as we travel along this road, so I’d just say keep open as you go. As Bonnie has said, the goal is really to reach the optimum state of wellbeing over the long-term. The one drug I’d hazard caution on establishing any kind of reliance on is prednisone/prednisolone. It is such a blessed relief in the short-term pain-wise but is so very damaging in the longer term (to bone and to the brain) and is a nightmare to wean from because the adrenals stop producing their own steroids (which we need to support life and and which are natural pain relievers) and the adrenals are so very difficult to ‘wake up’ again. There are many, many stories about weaning pred if you search the forum. IMO, better in all respects not to have to.

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)

[lemons]

Thanks Lynnie, I will keep an open mind, I think opting to use AP against my rheumatologists advice proves this to be the case. When he offered prednisolone I refused purely out of vanity as id heard they promote weight gain, I had no idea at the time how dangerous they are ! For me my goal and hope is to reach a relative pain free state with just antibiotics and the odd Ibuprofen, id be very happy with that. I do not agree with Bonnys comment that antibiotics are a conventional drug .Not when administered for the treatment of rheumatic diseases in any case. If that were so, my rheumatologist would’ve agreed to prescribe them and I wouldn’t have needed to seek out and pay for an AP doctor. I know antibiotics come with their own list of side effects, but at least they are known and can be easily dealt with. Thanks again Lynnie, Lemons.

[Suzanne]

@lemons wrote:

I do not agree with Bonnys comment that antibiotics are a conventional drug .Not when administered for the treatment of rheumatic diseases in any case. If that were so, my rheumatologist would’ve agreed to prescribe them and I wouldn’t have needed to seek out and pay for an AP doctor.

From The American College of Rheumatology website:

http://www.rheumatology.org/practice/clinical/patients/medications/minocycline.asp

“DESCRIPTION
Minocycline (Minocin) is an antibiotic, part of the group known as tetracyclines. It may be used to treat rheumatoid arthritis (RA). Although RA is not thought to be caused by an infection, minocycline may improve the signs and symptoms of this disease. Minocycline belongs to the class of drugs known as DMARDs (disease-modifying anti-rheumatic drugs).”

Unlike prednisone, which only treats symptoms, minocycline is classified as disease-modifying. This means the ACR believes it will alter the course of the disease.

I like how they say “not thought to be caused by an infection”, but of course that is because they can’t say it isn’t caused by an infection.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Valsmum]

I agree with Lynnie wholeheartedly!!! I would definitely recommend staying away from prednisone, I call it The Devil. I wish I knew about it when I was dxd with RA. I had never heard of it , what a mistake. I wish I could go back in time and have someone tell me what a bad drug it was back then. I am grateful to be around 6mgs now and weaning lower each month, but at this point I wean 1/2mg to 1mg a month, its a slow process, but I try to stay optimistic and I look at the positives, such as, I am not at 15mgs. Also I have had all my nodules disappear this year and also had a damaged joint move again after being frozen for two years when I started juicing and avoiding foods that made my joints swell. I hope all the recommendations from the members help you Lemon. I hope you have good health too. Take care.

[lemons]

Thanks Valsmum for the kind words. I must say though that In reply to Suzanne sending me the post from the American college of rheumatology Im a little perplexed. I am in the UK and the NHS does not regard Minocin as the gold standard treatment for RA, therefore if prescribed it would not be following convention.

[A Friend]

Edited on 9/18/2013: At the very end of this post/page (right before the signature line) the previous link there was deleted, and the link that should have appeared is now there. AF

@lemons wrote:

Thanks Lynnie, I will keep an open mind, I think opting to use AP against my rheumatologists advice proves this to be the case. When he offered prednisolone I refused purely out of vanity as id heard they promote weight gain, I had no idea at the time how dangerous they are ! For me my goal and hope is to reach a relative pain free state with just antibiotics and the odd Ibuprofen, id be very happy with that. I do not agree with Bonnys comment that antibiotics are a conventional drug .Not when administered for the treatment of rheumatic diseases in any case. If that were so, my rheumatologist would’ve agreed to prescribe them and I wouldn’t have needed to seek out and pay for an AP doctor. I know antibiotics come with their own list of side effects, but at least they are known and can be easily dealt with. Thanks again Lynnie, Lemons.

Lemons, All,
Hello again. After a quick look at most recent replies, just want to mention something I recall from a few years ago. One of the well known rheumatologists in the area where I live was known several years ago for not being “minocycline friendly.” That is where my first appointment was when I moved to this area a number of years ago, and didn’t know a thing about rheumatic illness or AP. Years later, I received a call one day from a patient interested in our local group, who lives quite a distance away. During our conversation, I mentioned Minocin and the fact that most rheumatologists will not prescribe AP treatment. She mentioned that this same rheumatologist had prescribed it for her as a dmard. What a surprise. This was probably during the time that these specialists began prescribing it as a “dmard”. So, this may be something else to keep in mind and mention, if you have problems finding a physician to prescribe minocycline/Minocin. If we know they are adamantly against AP, they might be “tolerant to prescribing it as a dmard. Regardless what we call it (“dmard” or “AP”), a trial of this used low-dose, long-term, may give patients the help they are looking for.

Lemons, another of my best finds to help serious problems I’ve experienced has been learning/studying/using Magnesium Chloride. (A search for magnesium in the window on the first page of Topic Discussion messages should find more information about it in the many posts on the Board.) During my own years of chronic illness, this form of magnesium for myself has been a superstar. The following is a link just found to post here for you. There are many others that can be found.
http://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/

Hope you find time to read it. Especially the section on bones. I like the food list in this link, too. The reason I settled on the magnesium chloride to supplement was because of what Dr. Sherry Rogers has written in her books (mentioning MagChlor liquid form, which I found was the strongest form available in a liquid without a prescription). My own discovered acidosis was so resistant to turn around back to a healthy pH, I was considering IV magnesium. Then discovering this form, decided to try it first. I add a dropperful to a little juice glass with water, lemon juice, and a bit of stevia. Have been using it ever since. Also important in my education was what Mildred Seelig PhD found in her research on magnesium and documented in a huge book on this magnesium research (can be searched free online) “Magnesium in the Pathogenesis of Disease.”

http://www.mgwater.com/Seelig/Magnesium-Deficiency-in-the-Pathogenesis-of-Disease/preface.shtml
Another link (found by doing a search within the book…using the word “arthritis” plus “jacket” (instructions said to add this word to search within Dr. Seelig’s book):
http://www.mgwater.com/Seelig/Magnesium-Deficiency-in-the-Pathogenesis-of-Disease/chapter14.shtml

Good luck to you. Hope you will continue to improve every day — and share your progress with us.

AF

[Suzanne]

In the US, mtx is considered the ‘gold standard’, but mino is one of several DMARDs and combo DMARD therapy has been proven to be as effective as the biologics.

I think you will find many more things to be perplexing. Rheumatologists don’t know the cause of any condition they treat, except gout. That’s about as perplexing as anything I can imagine.

A Friend is correct – ask what your DMARD choices are, and don’t mention AP. Our experience is that even AP drs. don’t know what “AP” means! That term seems to be used only on boards like this one.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[lemons]

Suzanne, on my very first visit to my NHS rheumatologist I asked him if he would prescribe Minocin. I had already read that Minocin was used as a DMARD. He point blankly refused and said that he didn’t consider Minocin to be an effective treatment for RA, even when used in combination therapy. He had heard of AP, but suggested that if I wanted to go down the “unconventional route” I would need to find a different doctor, which I did.

[Valsmum]

Afriend,

I agree with you that magnesium is a great addition. I have just started taking it again recently and I take it before bed and I sleep much better.
thanks for the links too.

Take care!!

[lynnie_sydney]

I must say though that In reply to Suzanne sending me the post from the American college of rheumatology Im a little perplexed. I am in the UK and the NHS does not regard Minocin as the gold standard treatment for RA, therefore if prescribed it would not be following convention

.

Minocycline is not the ‘gold standard’ anywhere for RA treatment – methotrexate currently is. Minocycline is, however, listed as a DMARD (disease modifying anti-rheumatic drug) by the ACR. The ACR is a peak body that rheumies throughout the western world do tend to take their lead from. However,even US based rheumies are sometimes surprised that minocycline is listed as a DMARD on the ACR list! So, it is often mentioned here (with an appropriate link) because the fact that it is on the ACR list will sometimes push a reluctant doc ‘over the line’ in agreeing to prescribe it – because their a** is covered if questioned.

AP approach to treatment is not a choice for the fainthearted……it’s not easy to find someone with whom to work anywhere in the world. And it can be confronting to be told we’re idiotic and even held up to ridicule by docs who are sometimes very vocal in their opposition to using it….though most of us get over the hurt and shock and ultimately develop a thick skin about that. It can also be more difficult to find an open medical practitioner in a country with a nationalised health service, such as the UK has. Good for you that you have stuck to your guns.

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)

[kwlile]

Hello,
I have systemic SD, and am visiting this website for the first time in months, but I wanted to reply to your question. I got on AP a month after being diagnosed, and never used conventional drugs. I don’t think I’m in total remission because I still have Raynauds and a bit if neuropathy in my feet and hands, but my skin is back to normal, and I feel almost completely normal. I was taking 100 mg 2xday, but am now taking it 3 days a week, I had a total of 4 rounds if IVs, but haven’t had those in over a year. I’ve decided not to IVs again unless I feel myself regressing. I hate to think where I would be today had I not gone on AP.
all the best to you.

[Author]

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