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Worldofme,
I’m so sorry you are suffering and struggling. I’m wondering about your “LLMD.” Most LLMD’s would not at all be concerned about “negative” test results, because they understand that most laboratory tests do not find occult chronic infections.
Also, if you were improving on Flagyl and Tindamax, is your doctor not willing to continue those meds?
Don’t give up. My son got better with a Rheumatologist/LLMD who used a comprehensive treatment of antibiotics, antivirals, antiparasitics and antifungals, give in combos and cycling through them. Also, he took a lot of antibiotic and antiviral supplements and supplements to break down biofilm (where bugs live) and to heal the intestines (because arthritis often comes from leaky gut, and because you need to take care of the gut when taking so many antibiotics.)
My son had severe costochondritis. You might find his story useful. I wrote this two years ago, and he is still in a complete remission. He will be graduating with a BSN in Nursing in June.
Congratulations! Such good news. My son did very well on AP, but I definitely see the value of the biologics. 4 of my siblings have serious arthritis. My youngest brother has done extremely well on Embrel..now about 10 years and he is in his early fifties and is a professional firefighter. He also reports that he always improves when he is on antibiotics. He saw a Lyme doctor for a couple of years and everything improved on antibiotics, but he still needs Embrel and it has been a lifesaver for knocking out the inflammation and the fatigue.
Not everything works the same for everyone. So glad to hear your son is doing well.
Diamond,
Have you ever been treated with anti-parasite medications? My son’s LLMD, who is also a rheumatologist, tends to suspect that parasites are a big cause of arthritis.
My son’s story is in the personal progress section. One of his initial symptoms was a bad diarrhea, so that was a clue.
Also, have you been treated with anti-virals?
Have you ever consulted one of the LLMD, AP rheumatologists? Like Dr. F in California or Dr. Z in Virginia?
Also, if you consider anti-depressants, you might consider Wellbutrin which has known anti-TNF properties… which could help.
I’m so sorry you’ve been suffering so long.
Mary
Great news. Glad to hear your son is improving.
I second Phil’s comments, and also wonder if whatever infection is in play needs a more aggressive combination of antibiotics. Has your son had any IV antibiotics?
If it is Lyme, or any number of other infections, higher doses and/or combinations of antibiotics are necessary to kill off the “persister” cells that survive some antibiotics and come out to re-infect later.
My son’s issues started with lower back pain, but the biggest axial factor was in the chest where the ribs touch the sternum. He also had a lot of enthesitis which turns out to be an early sign of AS, Ankylosing Spondylitis.
Does your son have a lot of axial issues? If so, you might check out kickas.org
Healing the gut is a big part of getting the inflammation down. My son went gluten-free, dairy free, and mostly starch free for the first six months. Basically a paleo diet with lots of good oils and supplements to heal the intestines. Also lots of probiotics.
Does Dr. F prescribe any antibiotics that focus on inflammatory bowel and intestinal mucosal infections? My son took oral vancomycin to fight those kinds of infections.
I don’t know a lot about psoriatic arthritis… does it usually have spinal involvement?
Mary
Michele,
My son has been in a complete remission for so long that I’ve lost count now… must be two years at least. I wrote about him in the personal progress forum… “My Son’s Story.”
He did try Biologics in the second year– he tried Embrel– but it did not seem to do anything at all and after about 7-8 shots he started getting very bright red reactions at the injection site so we just decided to stop.
He just continued treatment… herbals, IV Chelation, oral antibiotics, antifungals, antiparasitics and antivirals.
He’s doing really well. In fact he was just admitted to Nursing school at his university.
Thanks for asking. I’m sorry to hear that you’re not feeling well. Are you going back to Lyme treatment?
Mary
You might want to read what happened to my son. Go to the Personal Progress forum and read “My Son’s Story.”
My son’s rheumatologist believed that my son probably had a parasite, in part because parasites are a known cause of arthritis, but also because his arthritis started after a severe gastroenteritis.
But, with more investigation, he tested positive for Lyme Disease as well.
Many doctors believe that the cause is the presence of multiple infections and that they all have to be treated to get well.
Lyme treatment definitely helped my son. He had arthritis all over his body. His knees were not even the primary site… his worst problem were in the shoulders, the ribs near the sternum and the hips and ankles. Everything bilateral.
He is in complete remission and doing very well.
Mary
Just to chime in here…
My son’s rheumatologist was and continues to be perfectly willing to use both strategies. Her go-to strategy is to first treat the infection and get the infectious load down as far as possible. She was also willing to use Biologics and did try Embrel for my son about 1 year into treatment. He did not respond in any way, and at any rate he couldn’t tolerate the shots which caused inflammation around the injection site, so he only had three or four shots.
Another story is my brother, in his 50’s with 30 years of serious arthritis, almost 10 years on Embrel. He did about one year of antibiotic treatment a few years ago, all along continuing with the Embrel shots. He also has Crohn’s, and he feels that everything improved from the AP treatment. He’s planning to go back for more when he has the time and the money.
So… yeah not only can you go one way or the other, you can try both at the same time if you can find a doctor who is willing. We’re especially lucky because we have a rheumatologist who is also an LLMD.
Gold,
I can’t say exactly, because I was also on doxycycline at the time for a Lyme infection, and the after that Ceftin for the same. It’s hard to say what make me get well. I took so many things.
I you are into controlling joint pain with diet, you might check out kickas.org where some people are using a no-starch diet to control ankylosing spondylitis– a very serious arthritis.
Good luck.
My son’s doctor who is an AP rheumatologist as well as a LLMD (Lyme Literate Medical Doctor), uses prescription and herbal anti-parasitics as part of her protocol. She says that parasites are a well-known cause of arthritis.
Also, gastroenteritis frequently precedes the onset of arthritis, an indicator that parasites can be involved.
Mary
Both my son and I we’re diagnosed with SIBO, so I don’t know if it applies to everybody. We were both treated with oral Vancomycin at the beginning of Lyme treatment. I think my doctor assumes everybody has it, but she tests like crazy so she may have found some indicators of it.
Richie, What a joy when antibiotics for arthritis and Crohn’s is “mainstream!”
Here are a couple more links:
http://www.redhillbio.com/product-pipeline/rhb-104/
They are recruiting MS patients in Israel for the following clinical trial:
