Wow, your prescription information actually says mino is used for RA?
Most rheumatologists do not believe in an infectious cause to RA. I can't understand that position because there is a lot of good research that proves in most cases infection is behind it. My rheumy was one of those. He thinks the mino (which he prescribed only at my pleading) works as an anti-inflamatory only. He would prescribe steroids which are a disaster if in fact you have lyme or other bacteria.
I take a very low dose, 100mg on Mon, Wed, Fri. This protocol was used successfully for 50 yrs by Dr Thomas M. Brown. He was a rheumatologist who researched and proved infectious cause to most RA. He researched at Georgetown University. He believed the low dose pulsed every other day worked against mycoplasma. He said Lyme and Strep were two other bacterias he found in the synovial fluid of RA joints and they would require more aggressive therapy.
Until now I had no one willing to test for these bacterias. I have now found a rheumatologist who believes in infectious causes. I will keep posting on our progress as it occurs. I have only just begun with this doctor.
I tested positive for Babesia which is an intracellular parasite that lives in the red blood cells. She is most concerned about this parasite at present and my swollen left wrist. She is concentrating on them. I have started plaquenil (will begin it today actually) and she is trying to get insurance approval for Enbrel. These are to calm the inflammation.
I am not sure what she will prescribe for the babs but believe it will be either quinine and clyndimycin or Mepron and Azithromycin. I hope the latter as I read fewer people suffer side effects from it than the former.
At present she wants me to continue the minocycline.
Initially I had swollen feet and ankles too. Very hard to stand on them. I changed my diet and that reduced my inflammation greatly. If you are eating sugar and refined carbs, try cutting them out. Also, for many people, nightshade plants cause swelling. That didn't prove to be so for me but from what I read, I am one of a very few not bothered by them. The nightshade plants are: white potatos, green peppers, tomatos, eggplant.
Is mino the only thing you are doing for your lyme?
Sounds like you might consider a doctor who is educated with lyme disease. If you tested postive for lyme and was treated conventionally you probably were not treated long enough? The IDSA guidelines state 6 wks of treatment is all that's required!! The IDSA guidelines believes in chronic lyme and realizes treatment can be up to a year or two!
Not many of us have a positive test result for Babesia, yet most of us do have this parasite. My guess is when you were on low dosages of antibiotics it loosened up your antibodies which then allowed testing to be successful.
Testing for both lyme and all the co-infections isn't foolproof. Most of the sickest people test negative especially through an ELISA because our immune systems can't recognize this horrible bacteria.
I can tell you that if you have Babesia you also have Borrelia Burgdorferi. Hopefully, you will find a doctor who can treat you for all.
no, I'm on more than Minocycline. I have been on Mino with other abx. Lyme docs put us on continous abx to try to eradicate this bacteria as quickly as possible. The m,w,f regimen I don't think is enough. The bacteria is very smart, and can change from a spirochete into a cyst form depending on the environment; its called pleomorphism! It's this reason that docs prescribe different abx at the same time.
Mino is very good crossing the Blood Brain Barrier, and so many of us with MS use Mino.
has your new doc talked to you about why steroids is the worse thing you can take? Steroids is the food source of this bacteria....yikes!
Here's a great article by Marjorie Tietjen called Lyme Disease: Unraveling the Mystery of Misdiagnosis
I noticed you are posting on the lyme board...great to have you. I can't wait to watch your progression with your RA, and reading that you too are on your road to health!
very best to you,
Thanks for the warm welcome and hope for my healing. The rheumy I am working with ran a gazillion tests and found lyme, babs, Q Fever and EBV so far. She had ordered more tests but apparently there was not enough blood sample to run some of the tests, so they took more blood (I think I have supplied enough blood for all the folks in NYC) and we have yet to hear back on those. She highly suspects strep in my gut which is something I wanted tested for a year but the old rheumy did not believe in infectious causes to RA and would not test for anything.
The good news about all these bad infections is that if we can clear them up, it should also clear up my RA and put it into remission.
Momto3, (oh you're busy!)
Please let me clarify about animal proteins. They don't cause joint inflammation except perhaps with gout. They aggrevate joints that are already inflamed which is also true of nightshade plants. Having said that, I seem to be able to eat both without any obvious reaction. Whole fruits and veggies are our best defense against inflammation. Of course if you are vegetarian in the way my daughter was for years, you eat mostly pastas, cheese, beans and not many cruciferous veggies, then you are probably aggrevating your inflammation. LOL.
My illness too began with a virus. It caused my immune system to tank at which point all this other stuff activated. Therein lies the answer to why we get sick. Our immune systems are dealing effectively with lots of toxins and foreign invaders every day. As long as we have an adequate immune system, we stay healthy. Then something causes our immune system to collapse such as a virus and now all the dormant bugs we have accumulated in our lifetime comes to life and our immune system runs wild trying to deal with it all.
I have also tested highly toxic with lead and mercury, but every attempt to chelate it so far causes horrible joint flares.
My current rheumy says that is because we must clear out the parasites (babs) first. She is very knowledgeable in infections that cause RA and I am sooooo hopeful we can clear this whole thing up. Until now I have treated mostly holistically except for low dose minocycline and was doing very well. A second tickbite on mother's day weekend took me down and I just couldn't deal with it anymore. I'm going the allopathic route now and of course will continue to take care of my body to offset the damaging side effects of the abx.
I have just started plaquenil and the doctor is petitioning the insurance company for Enbrel. Enbrel scares me. It reads like a horror show of side effects. I'm trying to read everyone's success story with it that I can find. I will probably start a separate post seeking some comforting words.
Thank you all for your supportive posts. Momof3, I'm sure your doctor probably won't be very receptive to the idea of an active bacterial, parasitic and/or viral cause behind your RA, but I hope you will research it and if you feel it could be you, find a doctor who will test you. If you do have one or more of these triggers, the good news is getting rid of the trigger will get rid of the RA.