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Oh brother. After thousands of dollars and no results, my AP doctor in Riverside no longer takes my insurance. My son has been involved with AP since May of last year and I don’t want to abandon the therapy yet, but if anybody could PM me with information about a doctor they have success with I would appreciate it. We live in Tampa FL but are willing to travel. His psoriatic arthritis continues to thrive, so I want to make the transition as seamless as possible and have alternatives in place when I tell him. He is going to be seriously disappointed. Thank you! (or you could email me at mltelf@aol.com)
I am sorry that you will have to find a new AP physician due to the Riverside doctor no longer taking your insurance.
I am sure others from Florida will reply so you can understand your options. I wanted to respond to the part of your post where you said that your son had not yet seen results. While AP therapy is not a quick fix for most, 6-7 months seems like a good amount if time to see “some” results. I would suggest that you may want to post information on what exact protocol your son was prescribed by the Riverside doctor and get feedback on that.
My questions would be, what antibiotic(s) were prescribed, a combination? Or mono- therapy? Did you do any diet changes? In my opinion, after 6 months of AP with no results, I think other potential therapies may need to be considered and added. This forum is a great place to see what has worked for others.
For example, in my husbands case of RA, he started on Minocin alone, it seems to stop the progression and he got a little better. But after 6 weeks Flagyl was added. A Baker’s cyst the size of a golf ball on his elbow disappeared within a couple weeks after taking Flagyl and he felt well (no noticeable symptoms) within about 5 weeks. So the minocin in combination with the Flagyl did the trick.
Good luck!
Cheryl
OK. Here is the treatment my son received. Went to doctor in May. Started on 1 mino. He also took Meloxicam. Supplements: Inflavinoid..6/day (boswellia, tumeric, ginger) Kaprex AI..4/day (Vitamin D 500 IU, Zinc 5mg, Selenium 50 mcg, reduced iso-aipha’s 225 mg), FloraMax probiotic..1/day, Beta Glucan Forte..2/day (Whole Glucan Particle 500mg), Energy Boost..2/day (Biotin 450 mcg, Alpha lipoic acid 600 mg), Joint Support ..4/day (Green Lipped Mussels, Glucosomine Chondroitin and MSM), Vitamin D 5000 2/day to start, then to 1/day).
Son had severe diahrrea and was hospitalized initially but recovered. Doctor graciously had phone consultation with us when that happened. After about 3 mos moved mino to twice/day. In September switched Meloxicam to Celebrex twice a day which had great affect on his stomach. Yup. 24 pills/day which are being taken correctly. Thus far appx $4000 in supplements.
When we started treatment arthritis was in upper/lower back, both sides of hips, right wrist, left big toe, right hand from wrist to thumb.
He didn’t take Celebrex one day last week (forgot!). Greatly elevated pain levels, plus now in all afore mentioned joints plus two more toes, pinky finger, left shoulder, left elbow.
Had one follow-up visit in Sept where nothing was changed. Travel is Tampa to Riverside to see doctor.Was your son ever tested for Lyme? Even if he wasn’t, maybe a Lyme doctor in Florida could help. You could ask for doctors over at Lymenet.org
Most Lyme doctors also don’t take insurance though..but at least you could have someone closer to home.
My son’s doctor doesn’t take insurance, but we submit the receipts for out-of-network benefits and get some of it back. The medications and tests are all covered as normal.
Sorry to hear that your son is not progressing well.. I agree with others that he may need more aggressive treatment with combos of antibiotics. I would also consider him possibly needing antiparasitics or antifungals.
Mary
@MLTelfer wrote:
Oh brother. After thousands of dollars and no results, my AP doctor in Riverside no longer takes my insurance. My son has been involved with AP since May of last year and I don’t want to abandon the therapy yet, but if anybody could PM me with information about a doctor they have success with I would appreciate it. We live in Tampa FL but are willing to travel. His psoriatic arthritis continues to thrive, so I want to make the transition as seamless as possible and have alternatives in place when I tell him. He is going to be seriously disappointed. Thank you! (or you could email me at mltelf@aol.com)
Hi MLTelfer
I have psoriatic arthritis and I’m taking clarithromycin because I do not tolerate tetra 🙁
did Your son go to the clinic of dr. F in Riverside?
your son could try with another antibiotic such as doxycycline instead of minocin
I hope with all my heart that things will be better 🙂
Hey Mary,
The first doctor we saw in Riverside was LLMD and Lyme really isn’t a factor here in Florida. When I see his rheumatologist here in Tampa I will mention it though! Thank you!
Also, if need be I found a Harvard educated AP Doctor in NYC. He did undergrad at Harvard, med school at UNC Chapel Hill and internships at University of Chicago and Cornell, so I might give him a chance.
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