at a crossroads

[Michele]

Making treatment decisions is difficult in the early part of inflammatory illnesses and knowledge is power. Learn of your options and be in tune with your body's reactions.

It depends on if the affliction is truly an infection or not. It has just taken 2 1/2 years for me to get a doctor to confirm that my RA is really lyme disease with a bunch of coinfections. The doc did a genetic test that completely ruled out any possibility of RA. This doc is actually in a rheumatology / LLMD clinic.

Folks on this board helped me consider the lyme possibility and since I had air starvation issues with rib cage pain mentioned babesia to me. Every doctor I saw in these two years I asked if it could be lyme and babesia. I've seen alternative docs, top rheumatologists at research institutions, AP docs and worked with MP docs. None of them did the “right” tests for the coinfections I've acquired. However, I am always grateful for having chosen antibiotic protocols no matter how difficult it has been.

In the beginning of my illness, it took several months for me to be convinced that I didn't have RA but an infection. My first Rheumy did check me for lyme disease with an Elisa test. (worthless) When I first severely herxed with minocycline, I knew I was dealing with an infection. I assumed RA was an infection and never really believed in the “autoimmune” theory anyway.

Unfortunately, there is a lot of mis-diagnosis that happens with lyme as it is such a great imitator of other diseases.

Everyone has to follow their own path and instincts to treatment. I did not react “typically” to the first two days of prednisone and it put up huge red flags to me to research. This was the first internet board I'd ever posted on in my life and doing so saved my life.

It sure is terrific to have the people on this board who give input from all perspectives to their health journey's. I certainly appreciated hearing all aspects of options, from AP, MP to biologics. Other's sharing their experiences was an enormous help. It still is!

There is a road back, and so far, my scenery on this journey has been more diverse than I could ever have guessed when I first heard my doctor say, “Your Rheumatoid Factor is 104.” (I know now that RF is actually a non-specific marker.)

Research all of your options and ask a lot of questions!

[APbeliever]

Phil, my RA started suddenly one day about 18 months ago. I woke up with pain in the knees, hands and feet. Within a week even after taking Ibuprofen, I was in a wheelchair. At first they gave me cipro(stomach issues) and then prednisone and NSAIDs since my CRP was around 13.5 but no RF (seronegative). Rheumy wanted me to start Methotrexate. I took it for six months before I read AP therapy and I wanted to start AP. Methotrexate did not do any good so rheumy gave me Mino in addition to MTX. This combination put me in remission within a week. So I dropped MTX cold turkey after reading the book by Henry Scammell and Dr F's notes. This did not work out and I was in pain for a few months until I started feeling a little better. I decided it is working finally so I took it for 8 months without any problems until liver pains started.  Dropped Mino for a week and liver pain disappeared. Changed Mino to Doxy and the liver pain came back. For two months I did not take any antibiotic and took steroids and NSAIDs to block pain. Liver pain disappeared but then I developed staph infection(Never had any before all this started). Doc gave me Bactrim antibiotic and RA pains went away with it. Was very surprised to learn this was also a treatment used by some AP doctors. I restarted Mino 50 mgs three times a week on the advice of doc to see if it helps in  managing pain and swelling. I have bumped it to 100 mgs three times a week and no liver pain. This time I am taking NAC also to minimize damage. Don't know if it will start liver pain again or not. I am still suffering from pain and swelling. It could be RA or herx. Let's see what happens next. Rheumy has advised me to start on Biologics to minimize damage and I want to exercise so badly.

[PhilC]

APbeliever,

The fact that you developed liver problems while taking minocycline (and doxycycline) should be seen as a “red flag.” In the future, it would be prudent to make sure that your physician is aware of that fact because he or she may want to monitor your liver function more closely. Your physician may also decide to avoid prescribing drugs with significant hepatotoxicity where less toxic alternatives are available. If I were in your shoes, I would be proactive about this and research every medication my doctor prescribes in order to guard against the possibility that a drug with significant hepatotoxicity is prescribed inadvertently.

Here is some information that may be helpful:

http://www.umm.edu/altmed/articles/milk-thistle-000266.htm
http://cms.herbalgram.org/herbalmedicine/MilkThistlefruit.html

I started taking milk thistle extract shortly after starting on antibiotics. Although I don't have any test results to prove it, I believe it has helped.

Phil

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

[linda]

To add to Joe's response, it's this line of research that has led to the new experiments with a drug that causes over reactive immune cells to destroy themselves, and so far has shown no side effects. Idk if the statement is legit or not, but it doesn't really matter to me. In a perfect world, everyone would know about AP, but since this is still very much a grassroots movement I'm glad that those who don't know about it have something to aleve their pain.

[APbeliever]

Phil, I stopped taking MTX last year. My liver was ok when I stopped MTX. After I took Mino for 8 months, liver pains started. I took doxy and same liver pains. Therefore, I stopped any antibiotics for a period of three months and took NAC twice a day to clear my liver. Also took liver care supplement for liver. Finally, I restarted Mino last month 100mg three times a week. Don't wish to press my luck in increasing the dose of Mino as it has caused liver pains in the past.  Now, I am going to doc to get LDN(Low dose Naltroxone) soon. Wish me luck

[PhilC]

[user=1196]PamelaR[/user] wrote:

Seems pretty much like prescribing medical advice to me

Perhaps. But I didn't think the language I used was quite close enough to be a directive or I wouldn't have written it the way I did. However, if it's close enough for even one person to question it, then it is too close for comfort. I will rephrase my message.

Phil

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

[A Friend]

[user=13]Parisa[/user] wrote:

My husband is about 90% back to normal and the 10% that isn't is very tolerable.  He exercises fairly regularly including an occasional jog which is an absolute miracle considering the extent of pulmonary fibrosis and muscle loss he had before.  He has rebuilt quite a bit of the lost muscles although there is still some room to go. He has gone from severely underweight to having a belly (which I love).  Nothing like seeing someone whither away to make you appreciate a little extra flesh.  He has been off of antibiotics  and on antimicrobial herbs (and IVIG) now for about a month and so far is holding his own. 

Parisa, while this is not recommending any supplement or treatment, etc., for your husband, I will mention some of my own reading (and use of some of these things) for similar conditions that have been most helpful to me.  We never know when we might be looking for new diet,  etc.,  protocols that just may be needed for further help. 

1) A cardiologist, after onset of symptoms identical to angina, did all kinds of testing.  Ruled out angina, but did find from a non-usual test that my ATP (heart energy) was 1/2 of what was expected in me.  He had me begin taking two 100-mg Co-Q-10 to help this.  (Recently, while searching and learning more about ATP and important things related to ATP, some interesting information (and hopefully new things that will support improvement) was found. 
Two Sites (from among many available): 
http://www.oralchelation.com/technical/malic2.htm  — under “Magnesium & Malic Acid” 

Edit:  The link in the paragraph below got an “Oops”… so am pasting another link.  The Malic Acid Plus information can be read about if you look under the column heading “Maintenance”:  http://www.painstresscenter.com/AchesandPains.html
This reference is for the information the link provides for us.  I've never used this product (yet… but I do plan to look into adding some type of malic acid supplement, based on the science I've been reading, including ATP). 

http://www.painstresscenter.com/mall/Malicacidplus.htm — this is from a site, cited in the recommended resources in two of Dr. Sherry Rogers' books, Pain Free in Six Weeks and Detoxify or Die.  Dr. Rogers has written interesting information on magnesium chloride in the Pain-free book (and possibly in the other, but I've just been re-reading what she wrote in it; Dr. Rogers has about 5 medical degrees, I've heard her speak numerous times, and personally have had confidence in what she has written — from the vantage point of her education, plus being a long-time patient herself. Her Detoxify or Die book gives detailed information on the Far Infrared Sauna and replacement minerals, etc. we need to use when using the sauna. 

2) Replacing or adding EFA's to our diet on a daily basis.  Essential Fatty Acids are essential.  A search on RBFBB will probably find the long article on http://www.ArthritisTrust.org under Articles Important.  The combination of quality plain yogurt with liquid flaxseed oil, powdered probiotics, 1-3 tablespoons of freshly ground flaxseed, 1 tiny scoop of Kal brand stevia, along with 1/2 chopped apple, or blueberries, or other fresh fruit in season — using this twice daily when I was in a severe wasting syndrome about 1997-1998 gradually stopped this wasting syndrome, plateaued a month or so, and then I gradually regained the lost weight — but the most amazing thing was that during this time, I began looking like the picture of health… and felt calm, relaxed, and very healthy.  (Later, to my surprise, routine x-rays revealed widespread bone problems.  My oncologist said I was her mystery patient.  She'd never had anyone whose films were so bad, and who looked as healthy as I did, and was as calm and relaxed.  During a time out of testing after 4 months of it, I accidentally found the article above from ArthritisTrust.org and knew the reason why the  wasting syndrome was halted and reversed.  (Unfortunately, the happy story does not end here.  I had actually been on AP for about a year, also.  When I had to stop AP because of a severe pain reaction syndrome, I began sliding downhill again.  Luckily, in 2006, I finally figured out what was going on…. but you probably know this already, but thought perhaps new posters may not. 

3)  Another product I've used, as a recommendation by physicians treating patients such as ourselves, was Undenatured Whey Protein (not sold in health stores; it's a different type process).  This is (was for me, too) very helpful in addressing unfriendly organisms/infections when one is not on antibiotics and/or for some reasons cannot take them.  This product is also known for help in rebuilding.  When I had to get off of all meds and supplements because of a severe pain syndrome, my AP physician and I decided I should  get on this to address the lab report finding that was being addressed by Zithromax, along with pulsed Minocin.  He retested 6 months later, and the lab report of this same abnormal test was normal. 

AF

 

[Joe M]

[user=1212]APbeliever[/user] wrote:

Joe, so how is your wife's progress on Humira? Does she feel pain ? Any infections ? side effects with Humira? Lately, I am leaning towards using Biologics since I want to start my life again. I want to be able to exercise and do all the things I was doing before this dreadful disease started 18 months ago. Every now and then, I have to restart my Celebrex treatment and I really hate all NSAIDs since my body has all sorts of side effects on them. Mino is good but it is not 100 % effective so far. I have been advised not to use Zithro or Clindy due to liver problems.

Sorry AP, looks like we posted at the same time.  Does she feel pain?  Yes, but so do I, as we are both over 40.  The only RA type pain she feels is when she forgets to take a shot for a month or two – she'll start getting a twinge in her shoulder (which is where it started) and we know its time to get back on the horse.  The only infection she's had in five years is strep, which she caught from one of our daughters.  It was treated normally and went away with no complications.

I certainly understand your desire to lead a “normal” life.  We were at the 18 month point (approx) when we left AP and started on Humira.  Doc gave her a tapering dose of pred to knock out the flare while the Humira kicked in.  After the pred we were scared, but the RA never came back.  So the “progress” has been steady – clinical remission for over five years.

Of course this is our experience and while I wish I could guarantee everyone would have the same experience it is probably not representative of all patients on biologics.  However, if you do find one that works for you, studies show there is a good chance they will continue to work for many years.  There are studies you can find that show people on Enbrel for nine years or more with no loss of efficacy.

This is not an endorsement of biologics, but rather a personal experience shared because of question from a board member. 

Joe

[suera]

I'll just add my two cents to this post since I've done AP and Enbrel. First off, definitely read all you can. If you can find a good doctor that is a true blessing. I started MTX for a year before I found AP, they both helped but after 1 1/2 years on AP I did as my rheumy had been suggesting for over a year and went on Enbrel. Nobody wants the side effects of any medication but I got to the point where the quality of my life was so poor I was willing to go down that road. Do I have my old life back, no, but I do have a life back and I will be forever grateful for that. However IMHO at only two months in with AP I personally would give it longer than that. There are to many people that this treatment has worked for and in my view AP is still the preferred treatment. However, we all must make our own decisions. I do think AP works but you must give it a good chance before giving up because I do believe it is much harder to try AP once you start these toxic drugs and feel results….you don't want to give that up unless forced to do so. Good luck to you.

Sue

[eann]

I have been the route of DMARDs and biologics. None of it worked for me. I tried Sulfasalizine, Methotrexate, Embrel, Humira and finally Remicade IV.

My health deteriorated and I got weaker with each new drug. The rheumy kept telling me the next drug would likely help. I finally had enough and said no more.

I have read of some who really are helped by these drugs and that is great, for them. My only advice would be to know when to say no. My immune system is wiped out and I barely escaped lymphoma. I am convinced if I wouldn't have put a stop to it, I would be dealing with cancer now.

I am just starting with AP and I know it will be a long bumpy road, but I have hope. Everyone is different and what works for one may do nothing or even harm another.

Whatever you decide, I wish you better days.

[Kim]

[user=1962]eann[/user] wrote:

I have been the route of DMARDs and biologics. None of it worked for me. I tried Sulfasalizine, Methotrexate, Embrel, Humira and finally Remicade IV.

My health deteriorated and I got weaker with each new drug. The rheumy kept telling me the next drug would likely help. I finally had enough and said no more.

I have read of some who really are helped by these drugs and that is great, for them. My only advice would be to know when to say no. My immune system is wiped out and I barely escaped lymphoma. I am convinced if I wouldn't have put a stop to it, I would be dealing with cancer now.

I am just starting with AP and I know it will be a long bumpy road, but I have hope. Everyone is different and what works for one may do nothing or even harm another.

Whatever you decide, I wish you better days.

Sending best wishes eann that AP can turn this around for you.  Let us know what we can do to help you.

Take care…..kim

[Author]

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