posted
I have had Rheumatoid Arthritis for several years and was just diagnosed with Lyme. I'm taking two immunosuppresive drugs (Methotrexate and Enbrel) for the RA and Doxycillin 200 mg/day for the Lyme. Has anyone out there had experience with treating these two conditions simultaneously? I am concerned that the RA drugs will make it much harder to fight off the Bb.
Thanks, Ruth
Posts: 3 | From Maine | Registered: Aug 2006
| IP: Logged |
posted
Hi Ruth, Welcome to the group! Sorry you have Lyme, but I'm glad you found LymeNet.
I'm not a dr, but will share what I've learned about Lyme from necessity & experience.
In my case, I was diagnosed with early RA. Two years later, a Lyme Literate Med Dr (LLMD) in New Jersey said I had Lyme Arthritis. When treated with antibiotics (abx), the arthritis started improving.
Immunosuppressants make treatment of Lyme much more difficult.
Also, you're taking the typical dose of Doxy per day (200mg). LLMDs usually prescribe that amt twice a day, unless there is a special medical reason for the lower dose. They have found the stronger dose is needed for this complex bacteria.
How long are you to take the 200mg of Doxy? Was your diagnosis based on test results?
Print "Diag Hints & Treatment Guidelines..." at www.ilads.org/burrascano_0905.html It's 33 pages of excellent info about all aspects of Lyme & other Tick-Borne Diseases (TBDs).
page 17: Antibiotic Choices & Doses page 19: Treatment Categories Gives recommended length of treatment based on symptoms & length of time you think you've had LD.
I highly recommend that you have an evaluation by a LLMD - ASAP. He/she will know the best way to deal with the arthritis and Lyme at the same time.
A significant number of people with Lyme also have one or more other TBDs, so that's another reason to see a LLMD. They'll consider all diseases.
Go to Seeking a Dr (here on LymeNet) & put your general location in the title. Contact info will be sent to you privately.
On the left, go to Support Groups & contact those in your state & surrounding states. They should be able to give you info on LLMDs. You need to be sure that your Lyme Dr has satisfied customers.
The chicken pox virus can hide out & flare up later as shingles. Lyme can go dormant, too.
If you're early in the disease, you need to be sure treatment is adequate - long enough & strong enough - or the disease will flare up again when your immune system is stressed.
If you've had Lyme a long time, then it's even more important to see a LLMD. They treat Lyme patients every day, so they have special expertise in this area.
Again, welcome to LymeNet. Ask as many questions as you need to ask, and read, read, read!!! TBDs are very complex. Look for the "Newbie Links" under Med Questions.
Posts: 4638 | From South Carolina | Registered: Mar 2001
| IP: Logged |
Thanks for the info. The RA was diagnosed from a positive RA factor and elevated sed rate along with the symmetry of affected joints (left hand/right foot, etc.). I have not responded to abx therapy (minocycline) for the RA, but the combination of Mtx and Enbrel is keeping me functional although there is still joint damage occurring.
The Lyme started a couple of months ago after a tick bite that was surrounded by a red area. I removed the tick and several weeks later started getting severe leg cramps (I didn't realize it was almost certainly Lyme). Another few weeks later an event of fever/chills led my Rheumy to assume I had a bacterial infection. He took me off the RA meds and started a 12 day course of Biaxin. After one day I felt better than in years! At this point I had a weird jaw pain and a GP Doc did a Lyme test which came back negative.
More weeks went by and despite resumming the RA meds I felt unusually bad (headache, nausea, fatigue etc). I insisted my Rheumy see me and he had another Lyme test done (the Western blot) which was positive. I have been on Doxycillin. for a week, and I think there's some improvement. The full course is 30 days.
It is hard to separate the RA symptoms from the Lyme, but there are definately good days. So I am wondering if I should be taking a heavier dose of the Doxy, since I may have caught the Lyme early enough to get rid of it.
Posts: 3 | From Maine | Registered: Aug 2006
| IP: Logged |
That is NOT good news!! I would ask to be upped to 400mg per day and after one month, if you're still sick, ask to be put on Biaxin again.
I think Biaxin is awesome, but you want to make sure to get ehrlichiosis with the doxy, just in case you have that as well.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi,
Something to think about- could the your RA have been caused by lyme disease, a tick bite years ago?
Many folks don't even know they were bitten.
My friend with severe RA has just been diagnosed with lyme and erichulosis. She has had it 20yrs and many many drs. missed it and just treated symptoms.
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Hi Ruth,
I have Lyme and RA although I definitely had the Lyme first.
Last January, I was very disabled with the arthritis to the point I could barely stand and my hands were all but useless. I couldn't write with my dominant hand or feed myself or brush my teeth, etc.
I had been in treatment for lyme for 5 mths by the time RA was diagnosed. I began a research on RA and found a website supporting Leaky Gut Syndrome as a cause of RA. It espoused a vegan diet and said "if this will help you, you will know it within 2 weeks". I felt I could do anything for 2 weeks, so I went vegan (no meat, dairy or sugar). The improvement in 2 weeks was miraculous. I began to be able to use my dominant hand again and to be able to walk as long as 2 hrs before having to stop.
I found a doctor to work with me on healing my gut. Additionally he tested and found I had systemic yeast, parasites and heavy metal toxicity. My liver was stressed and my WBC were comatose. My RBC were clumping and linking. My addrenal count was 35. Normal is 200.
He has me on massive enzymes, amino acids, vitamin C, Co-Q10, DHEA, L-Glutamine. He has given me IV treatments of Myers Cocktail (vitamin mix), Lipostabil (liver support) and Glutathione (detoxifying agent) for 2 mths. I begged my rheumie to give me minocycline instead of methotrexate and he reluctantly agreed. I am taking 100mg MWF.
My improvement at first was 2 steps forward and 1 step back. Then I went into a 2 week remission. Yea!! On my good days now I have no pain and on my bad days I can still do everything including ride my horses, I just do it with some joint pain. I never have to take a pain killer anymore. Next, my doctor (not the rheumie) tested me for food allergies. This required me to go back to my normal diet for one week before the blood was drawn. I expected some pain increase and I did have some, but not too bad.
When the test results came back, I was dismayed to find I was allergic to foods I was eating pretty steady like lemon, blueberry, strawberry, lettuce, egg whites among other things. sigh....
When I cut out these foods, my joint pain began to increase again at an alarming rate. 10 days later, my anxiety level high, I got a massage to help with my pain. She used to be a nurse and said it sounded like my body was detoxing from the withdrawal of the offending foods. After the massage, I was painfree for the first time since eliminating the foods. I went home and re-read my test results and the information packet. Sure enough, it warned that most people do get sick with headaches, joint pain and/or sinus issues and that all this would be temporary. Tonight I am once again 95% pain free and very relieved to know this was a normal event.
Biggest thing I realize is that my RA is very food driven which I believe stems from the Leaky Gut.
I'm not sure at this point if Lyme is still an issue or not. Time will tell.
Meanwhile the RA is resolving.
I'm so glad I never took the methotrexate. It may seem to be helping, but it is really destroying you. It works by shutting off your body's only means of defense. It does nothing to resolve any number of issues that could be the source of your RA. Meanwhile those issues continue to do their damage and eventually the methotrexate will cease to work. By then the damage to your body is extensive.
Find a doctor who will seek out the source/s of your problem and resolve them. Learn about the many things that have been proven to be the source of many cases of RA. Find out if you have any of these and if you do, eliminate them. Then see if you still have RA.
When I have resolved all my known issues that have been proven to cause RA, if I still have RA at that point, then and only then will I take immune suppressing drugs because at that point, I will be out of hope and will just be buying time.
I do not believe RA is permanent. Lyme is a prominant cause of RA but it is very difficult to eradicate. Meanwhile the drugs used for both the RA and the Lyme will damage your gut. You must take probiotics at the very least and more importantly, be sure to eat a diet that is anti-inflamatory and nutrient dense to help the gut remain healthy. Once your gut starts leaking and allowing things into your body that were never intended to be there, you will become very sick and many doctors won't even realize why. They will just keep medicating you with more gut damaging drugs and a vicious cycle begins.
Good luck and I wish you total success in finding your cause of RA!!
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
-------------------- Charter member of the ~ Delux Toasting Club ~ Our Moto: "Take No Prisoners" Posts: 95 | From San Diego | Registered: Nov 2005
| IP: Logged |
bettyg
Unregistered
posted
quote:Originally posted by Ruth 1:
I have had Rheumatoid Arthritis for several years and was just diagnosed with Lyme.
I'm taking two immunosuppresive drugs ( Methotrexate and Enbrel) for the RA and Doxycillin 200 mg/day for the Lyme .
Has anyone out there had experience with treating these two conditions simultaneously? I am concerned that the RA drugs will make it much harder to fight off the Bb. Thanks, Ruth
Breaking this up for many neuro lyme minds like mine. We can't read long blocks of text. So please have shorter paragraphs for comprehension/reading for us neuro lymies. Thanks so much Ruth.
Did I sent you by PM/private message my newbie links/advise? Look in there for TREEPATROL'S NEWBIE LINKS, and then
look for ART DPUGHERTY'S name. He compiled info for most of the 300 other illnesses mimicking LYME including RA; look for that; it may explain more to you ok. Bettyg
IP: Logged |
Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
RA is linked in many cases to mycoplasma fermentans. Have you been tested for it?
If you did not respond to minocycline and the doxycycline is not helping your RA symptoms try a florquinolone like Factive, Levaquin or Cipro, mycoplasma fermentans is susceptible to them.
A assume that Methotrexate and Enbrel suppress your immune system. That is not good when you are dealing with an infection.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic