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I also take supplements (have been for a long time…not new). Here's the list:
Fish Oil
Vit D3 = 1,000 day and Calcium/Magnesium (I have osteopenia, too)
MSM
Vit C = 1,000mg day
Probiotics
Anti inflammatory mix (herbs like tumeric and bosweillia, etc…too many to mention)
multi vitamin
It's a few handfuls every day. I used to think the fish oil and anti inflammatory mix worked, but no longer do. Maybe I got used to it and need to increase? I dunno.
Is that Boston Terrier yours? Beautiful!!!
You are on the right track with those supplements which help the body reduce inflammation but too many triggers will overcome the efforts, so it is important to reduce whatever is causing the inflammation in the first place as well as help the body produce less inflammatory response.
Currently I am on 10,000 IU of Vit D daily. When I increased from 1,000 to 5,000 IU daily, I saw immediate and significant improvement. Moving from 5 to 10 did not give me noticeable response but I have read many times that people with RA need 10,000 IU daily (or a permanent vacation to a tropical beach). My doctor measures my D levels frequently and 10,000 IU finally put me in the normal range.
Susan
Susan,
Yes, the Boston is my little girl Lucy (8 mos and full of spunk).
I rechecked and I'm actually taking 2000mg Vit D3 daily. Last spring I was tested and found very low levels. I did a course of doc prescribed mega dose 5000mg (1x week for several weeks, then 1x mo for 3 mos). Now on on my own maintenance dose. I don't mind kicking it up again, but isn't vitamin D toxic in doses over 5000mg? I saw that somewhere.
There is so much debate about the toxic levels. It is best to have your levels checked periodically while supplementing.
Hi,
I am in Washington DC and also looking for a physician (hopefully one who accepts insurance) that will treat me with antibiotics. I caught a “flu” from a very sick person sitting next to me on an airplane in Sept 2008 and I have never recovered. My finger joints are now disfigured and I have acquired psoriasis. I suspect (after research) that I acquired a mycoplasma infection and really had walking pneumonia, not a viral flu. I need help–most doctors just want me to take chemo and I'd rather get to the core problem. Please let me know if you found a good physician in this general area. Thanks very much!!!
lch
lch,
I travel 3 1/2 hrs to see my physician who is in your area (you lucky dog!). She is a rheumatologist who believes in infectious causes to auto-immune disorders. She is also a lyme specialist who follows ILADS protocols.
I highly recommend her. She is very smart and tailors treatment to you. She does not practice “one size fits all”.
However, she no longer accepts insurance for her office visits and she is not cheap. She does prescribe meds in a manner that saves you co-pays. All her bloodwork is covered by my insurance and she only uses accepted labs. There will be plenty of supplementation that is also out of pocket and occasional tests that are not covered by insurance. She does have a supplement shop right in her office but you are never pressured to buy from her. I have found that most of the time, she is the cheapest deal but I do purchase some things cheaper on the net.
She offers Care Credit which is an interest free (3% fee I have been told) loan for your medical expenses. This would help you get through the initial costs of care.
I can't post her name and number here but if you send me a private message, I will be happy to share with you.
Mycoplasmas are very hard to eradicate. Why are your doctors recommending chemo?
Susan
My official diagnosis is psoriatic arthritis, so the protocol is methotrexate. However, since it was such a rapid onset after my “flu”, I suspect mycoplasma or some other bacterial infection. I need testing to rule out such things and most physicians use the traditional treatment approach: chemo and pain management. Thanks–I'll await your email!
I am new here……..looking for a doctor in Northern, VA….I saw Fairfax and am wondering if you are talking about Virginia?! I hope so…..if so, can you let me know?! Thanks:) Rita
Yes, there is a doctor in Fairfax, and she is excellent. Feel free to private message me if you want more information.
Mary
UPDATE July 2010 – Been on Minocin since April, but had to stop twice to take other antibiotics for 2 recurring UTIs. Was traveling recently and had a lot of pain and noticed some pronounced swelling in my ankles and feet — this was new and freaked me out to see I no longer have ankle bones showing. Went to the Rhuemy today and got Prednisone (5mg) AND a Methylprednisolone Dose pack (4mg)…doc says to take both at the same time(??). I know it's not good to be on this for long term, but thought it might help with the swelling in the feet. Can I pulse Prednisone? I also think it's time to raise my level of Minocin from 100mg 1x day, MWF to 100mg TWICE a day, MWF. Does this make sense? My Rhuemy is no help and I'm doing this on my own, but she thinks I should be taking the Minocin every day. I'm also taking Meloxicam. Rhuemy wants me on Methotrexate, but I'm resisting for now. I've asked her to give me 6 more months on Minocin, to give it a proper chance. I'm worried about taking the prednisone, but feel strongly that I need to stop the damage that is occuring in my ankles/feet. Does this seem like a reasonable course of action?
Carrie – swelling in your ankles and feet is inflammation, rather than “damage”. It may be a component of herxing, since you started mino in April and have come off it twice since then, so the time period fits. As previously discussed, the UTI's may indeed be a component of your disease – often other things get stirred up once on an abx regime. Candida is also something to consider here – can cause symptoms of UTI's. I know you are seeing a conventional rheumie and am not really surprised that he thinks you should be taking mino twice a day every day. That is pretty much the expected position from a conventional doc. With your symptoms and responses on a low, pulsed regime, if it were me I'd be very cautious about doing that. More is not better on this approach to treatment, less is actually very often more – quite counter-intuitive to the conventional approach. Any chance of you seeing an AP doc to get some help from a less conventional stance? Lynnie
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)Thank you, Lynnie. Yes, apparently there is an “alt” doc near me that I should check out. I understand it's very expensive and have put it off a bit to pay down some other bills first. However, it's on my list of things to do…I'm shifting my priorities! First comes my own health!
Hi Susan,
I am in northern VA and am looking for a doctor who knows about treating with antibiotics. I also sent you a private message. Can you give me her name and number?
Thank you,
Pam
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