Any advice on my painful RA?

[Anonymous]

Hi, guys,
I’m writing this to search for my RA’s causes and relief. To be honest, I accidentally found this forum while looking at Serrapetase info. Then, after I read information on this website about antibiotic protocol, testimonials and others’ writings, I felt like “is this what I have been looking for all these years?” I hope this is it, so I would like to ask a few questions to you if you could help me. (I already asked for a list of AP doctors in my Cincinnati, OH area. So, I need to be certain that this is the method I will dedicate now).
I got diagnosed RA started Dec. 2009. A couple of months before that (now that I thought back), I was very ill with flu-life symptoms (night sweating a lot, chilling, fatigue…) I remembered that first time in my life I suddenly developed mumps so that my both chicks were swellen and couldn’t chew any foods for a while. Then, a couple of months later, when I walked about my house and school with my wife, I felt my backpack was too heavy and my feet started aching, then all the inflammation went all over my body joints. So, I went literally crippled. couldn’t do anything without my wife’s help.
As you can see from my writing, I’m not native speaker, I came to US to study in 2008 (one year later I developed RA!! 😥 ). I used to live about campus with woods so, my apartment balcony was pigeon’s nest. So, I’m wondering if it is possible I got infected by pigeon’s dirty things when I sometimes tread on them. I’m not sure. Who know. 😉
Also, one thing I noticed then was that my nymph nodes on groin and elbow were swollen big. (Although they were
reduced significantly after medication, strangely, they repeatedly get bigger or smaller depending on my level of inflammation (Any thoughts?)

Anyway, I wrote it in details to give you some backgrounds with which you may guess what could trigger my RA.
When it comes to treatment, I had done something I regretted now. I had relied on just natural remedy, then, within 1 year, my many joints were damaged very seriously. That’s when I was forced to take RA medications like MTX and prednison and others. Actually, I seemed to agree with MTX, so under that drug I can manage to live my life without other’s help. But, it does not mean I don’t have ups and downs. I still can’t use stairs and sometimes after eating something my fingers are getting swollen.

I’m 40 years old male. My doc told me if you plan to have a baby with your wife, you should be off MTX at least 3 months before trial. So, it’s been 2 months after I off MTX, I’m just now having a very difficult time although taking 10mg prednison. I maybe have to go back to MTX and give up a child for a while.
But, after I read your stories here, I kind of got to have some hope that if I go with AP, I could cure my RA for good someday although it will take some time.
How do you guys think? Any of my story relate to you? Any advice?
I really appreciate your thoughts!!!
Thanks
SD

[Rosey UK]

Hi,
I know the bewilderment your feeling right now and wondering what caused it all etc. however here on RB they strongly believe in having tests for Lyme disease. This can cause your symptoms and if youre tests are positive for lyme your doctor will prescribe the relative antibiotics.
Please keep searching on here. Also read Dr Thomas McPherson’s book The New Arthritis Breakthrough by Henry Scammell, available at Amazon.
Good luck!
Rosemary

[Anonymous]

Thank you, Rosey,
Yes, I just suspect that my RA maybe developed from Lyme although I had not been tested for Lyme.
So, it’s been 4 years since I been diagnosed RA. Do you suggest that I should ask my RA doctor to get me tested
for Lyme at this point? I’m not sure if that would prove positive still after 4 years, but, if that’s necessary first step,
I will sure do it. I think, however, my RA doctor, given my past experience with her, would get annoyed and not listen to me. She has dismissed whenever I brought up some natural remedies or food allergies issues.
What would you guys recommend? Go directly to AP doctor? I have university student health insurance, so not sure if it will cover any costs from AP doc.

[Eileen]

Hello,

Asking your rheumy. to test you for Lyme? No. Go to an AP dr., have a good lab work-up and seek a LLMD to sort through this with you. You will be much more supported and understood. I’m sorry to hear that you are feeling so crummy. Stay on this forum…you will learn so much from the rest of us.

I’m sure when Maz sees your post, she will chime in.

Eileen

[Maz]

@pendol3 wrote:

I got diagnosed RA started Dec. 2009. A couple of months before that (now that I thought back), I was very ill with flu-life symptoms (night sweating a lot, chilling, fatigue…) I remembered that first time in my life I suddenly developed mumps so that my both chicks were swellen and couldn’t chew any foods for a while. Then, a couple of months later, when I walked about my house and school with my wife, I felt my backpack was too heavy and my feet started aching, then all the inflammation went all over my body joints. So, I went literally crippled. couldn’t do anything without my wife’s help.
As you can see from my writing, I’m not native speaker, I came to US to study in 2008 (one year later I developed RA!! 😥 ). I used to live about campus with woods so, my apartment balcony was pigeon’s nest. So, I’m wondering if it is possible I got infected by pigeon’s dirty things when I sometimes tread on them. I’m not sure. Who know. 😉
Also, one thing I noticed then was that my nymph nodes on groin and elbow were swollen big. (Although they were
reduced significantly after medication, strangely, they repeatedly get bigger or smaller depending on my level of inflammation (Any thoughts?)

Anyway, I wrote it in details to give you some backgrounds with which you may guess what could trigger my RA.

Hi SD,

Welcome to the RBF discussion forum. 🙂

There is an infection, called Chlamydophila psittaci, that can be passed by pigeons and can cause severe flu-like symptoms with pneumoniae and also inflammatory polyarthritis.

http://www.ncbi.nlm.nih.gov/pubmed/22153301

The CDC has described symptoms in humans here:

http://www.cdc.gov/mmwr/pdf/rr/rr4710.pdf

Thing is, there are many infections that can look like C. psittaci, as described in the CDC article, and many more in addition to these that can also cause various inflammatory arthritides in humans. The best type of doc to see in this sort of situation is an experienced LLMD, as the others above have suggested. These types of docs – the experienced ones – are great “investigators” who can help to identify the offending pathogens and who will also use combination protocols that will cover a multitude of “sins,” so to speak. E.g. in the case of C. psittaci, the treatment usually involves a tetracycline and macrolide abx combo and this combo also work for mycoplasma, Lyme disease and any number of other potential infections. The added benefit is that both tetras and macrolides have been studied for RA and have demonstrated excellent efficacy. In fact, minocycline is classed as a DMARD by the American College of Rheumatology. So, whether one believes in infectious causes or not, minocycline is still a DMARD that any rheumatologist should be willing to prescribe….operative word being, “should,” because not all will do so, using all kinds of excuses, like “It’s a weak DMARD, “It’s an old treatment,” “It’s been disproven,” “It’s only used in early RA,” “It’s only used when all else fails,” “It causes arthritis (no, it causes a “herx” and it may, in rare instances cause drug-induced lupus that is reversible upon discontinuation,” etc. etc. 🙁

As you’re already on methotrexate, the good side of this is that minocycline can also be alongside this drug and, when one starts to feel better, the methotrexate can be slowly weaned. O’Dell did some studies on methotrexate and doxycycline:

http://www.ncbi.nlm.nih.gov/pubmed/?term=O’Dell+methotrexate+doxycycline

The only downside is that you’re in Ohio and LLMDs are thin on the ground out there, but there are one or two. Would you like these listings, SD?

[PhilC]

Hi,
@pendol3 wrote:

My doc told me if you plan to have a baby with your wife, you should be off MTX at least 3 months before trial. So, it’s been 2 months after I off MTX, I’m just now having a very difficult time although taking 10mg prednison. I maybe have to go back to MTX and give up a child for a while.

That is actually not a bad idea (going back on MTX). If you stay on prednisone too long you can become “addicted” to it and then it can be extremely difficult to get off of it. Also, when a person starts on antibiotic therapy the inflammation often becomes temporarily worse. The MTX can help keep the inflammation under control, thereby making the early phase of antibiotic therapy easier to tolerate.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Anonymous]

Thank you for your suggestion. Phil,
I will consider taking MTX before I can meet my RA doc to ask for minocycline.
One question is, the reason I stopped MTX and switch to prednison is becuase my doc told me for me to have a baby with my wife, I should be off MTX at least 3 months.
As you know, since I’m suffering, I may as well go back to MTX and give up on a child for a while…
Do you know how long should I be off minocycline before planning a baby? I’ve looked for the info online, but, all the information is about female’s pregnancy.
One thing I found is
“Minocycline /Toxic to developed sperm/ Toxic to bovine (cow) sperm; believed to be toxic to human sperm as well”

I heard that male’s current sperms are product made 3 months ago. Then, does this mean that I should be also off minocycline 3 months ago along with MTX? I’m just worried then, how can I be ever prepared to have a baby…(I’m 40 years old. now.). Thank you for your thoughts!
SD

[PhilC]

Hi,
@pendol3 wrote:

One thing I found is
“Minocycline /Toxic to developed sperm/ Toxic to bovine (cow) sperm; believed to be toxic to human sperm as well”

I did not know that about minocycline. In that case, consider talking to your doctor about giving you a prescription for an NSAID such as celecoxib (Celebrex), etodolac (Lodine) or nabumetone (Relafen) that you can take in addition to the prednisone. As of this moment, my preference is for nabumetone since it has been associated with a lower incidence of serious gastrointestinal adverse events.

See:

Safety of the nonselective NSAID nabumetone : focus on gastrointestinal tolerability.
http://www.ncbi.nlm.nih.gov/pubmed/18484783

Nabumetone: therapeutic use and safety profile in the management of osteoarthritis and rheumatoid arthritis.
http://www.ncbi.nlm.nih.gov/pubmed/15456329

Gastrointestinal safety profile of nabumetone: a meta-analysis.
http://www.ncbi.nlm.nih.gov/pubmed/10628594

Note: People who are allergic to sulfa (sulfonamide) drugs should avoid taking celecoxib.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Pip]

I’d be interested in which ‘natural remedies’ you tried. Also, if you want the diet aspect, you might try this.

http://www.youtube.com/watch?v=KLjgBLwH3Wc

This worked for 2 people I met coming down with “RA’ or something similar. You know, the months of something wrong but nothing showing up in the tests yet. Like you described. Both are happy as a clam, no longer have any health issues, and oddly, both refuse to get off the diet now because they feel so much sharper, better attention, etc.

Everybody else got your other questions.

Pip

[Pip]

I wanted to come back to the effects of Mino on childbearing. If I remember correctly, Mino effects women in pregnancy after week 12 and can cause (short???) bones and discolored teeth for the baby. I didn’t know the effects on spermatozoa so went and looked it up in Medline.

This is from 1991 and shows Mino to be toxic to sperm at any concentration.

http://www.ncbi.nlm.nih.gov/pubmed/1991524

This, from 1979 – shows the bovine sperm you were talking about – http://www.ncbi.nlm.nih.gov/pubmed/508386 and basically says there was a reduction in motility. There was a 3rd ‘dark ages’ study saying that Mino kills various pathogens in bull sperm. No worries there about toxicity. On that study, they were trying to get the microbes out of the semen to use it.

This, from 1990 – http://www.ncbi.nlm.nih.gov/pubmed/2141716 – shows better quality sperm after 3 and 6 months post treatment.

This – from 1992 – http://www.ncbi.nlm.nih.gov/pubmed/1479417 – shows minocycline improves the seminal indices in infertile males with high pus cell count in their seminal fluid.

This – from 2009 – http://www.ncbi.nlm.nih.gov/pubmed/19364080 – shows a protective effect on sperm.

I could find nothing linking Mino and male birth defects – I didn’t comb too far into this, but you might if you want to be sure. http://www.ncbi.nlm.nih.gov/pubmed/?term=minocyline+male+birth+defects

Hope this helps.

[Anonymous]

Hi, Pip,
Thank you for so many informative links.
The results from many studies seem to indicate minocyclin could also improve male sperm quality after treatment, which is positive news for me. Thanks for pulling many good info for me.
In terms of diet, I can say that I have done different types of diet available out there: long-term fasting, candida diet, paleo diet, vegitarian, etc.. Some of them helped me, but, seemed not to touch the root cause of my illness.
I’m still doing low carb, nightshade-free, dairy-free, egg and soy-free diet. So, I’m not right now attracted to any hype about diet. I’m just pretty excited about minocyclin’s ability to cure my RA along with some secondary stuffs.
This Friday, I have an appointment with my RA doc, and I’m thinking hard right now about how I can persuade her to prescribe minocyclin. I hope everything work out well. If anything you think I need to bring to her in terms of brochure or materials that I can print, please let me know.
Thank you, all!!
SK

[PhilC]

@Pip wrote:

This – from 2009 – http://www.ncbi.nlm.nih.gov/pubmed/19364080 – shows a protective effect on sperm.

You misunderstood. Minocycline helped protect testicular germ cells from dexamethasone-induced apoptosis. Testicular germ cells are involved in spermatogenesis but they are not the same thing as sperm cells.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[PhilC]

@pendol3 wrote:

The results from many studies seem to indicate minocyclin could also improve male sperm quality after treatment, which is positive news for me.

Keep in mind that “after treatment” usually means that the minocycline has been discontinued. Also, the treatment periods were short, unlike the long-term approach used to treat RA.

Here are a couple of articles I just found that may be helpful:
5 Surprising Drugs That Can Cause Infertility – Can You Name Them?
Medications and Male Infertility

@pendol3 wrote:

I’m still doing low carb, nightshade-free, dairy-free, egg and soy-free diet.

Excellent!

@pendol3 wrote:

This Friday, I have an appointment with my RA doc, and I’m thinking hard right now about how I can persuade her to prescribe minocyclin. I hope everything work out well. If anything you think I need to bring to her in terms of brochure or materials that I can print, please let me know.

See: Use of Minocycline for the Treatment of Rheumatoid Arthritis

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Anonymous]

Phil, Those are fantastic articles you put together for me.
I appreciate that! I will discuss with my RA doc, and keep you guys know how it goes.
Thanks
SD

[Pip]

Different diets for different people.

Years ago I researched the nightshade thing and decided it sounded almost like a herx so kept them in and eventually they didn’t bother me and I got stronger. That Dr. Wahl Ted TV video features them heavily. There was an article about how the less gut microbiota diversity you have, the more people react poorly to certain foods. How do you increase gut diversity? By eating the foods slowly until you tolerate them. Kind of like homeopathy, but different.

I like the use of cheese to help reset the gut (after washout) and I like eggs, mainly because I don’t believe in the cholesterol hype. Why no eggs?

I can see the soy as it’s almost all GMO now. I definitely react to GMO.

Isn’t it amazing how different things work for some people and not others? I think it comes down to the 3 different enterotypes.

http://www.livescience.com/20929-microbes-healthy-humans-microbiome.html

http://www.medicaldiscoverynews.com/shows/258-enterotypes.html

Pip

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