pred and lyme

[reesak]

Hi – I have been on Azithromycin for about 3 weeks now for lyme and am still on mino 50 mg daily.  I am also weaning down on prednisone and am on 3 mg this week and will go down to 2 mg next week and so on.  My question is for those of you that have tested positive for Lyme, did prednisone help you?  From what I've read if you have Lyme then prednisone will NOT work for you and of course it makes the Lyme worse.  However, it has worked TOO well for me and I am flaring up a lot on 3 mg.  So, at this point I don't know what to do when I go off the prednisone for the pain and flare-ups.  Today I can hardly move my left wrist and I type for a living so I am very worried.  Some days I really question the Lyme diagnosis and just wonder if I do really have RA that is not caused by lyme.  I really don't want to take the Enbrel that is sitting in my refrigerator but I am getting frustrated with this whole thing.

 

My doctor said I could stay on 5 mg of prednisone for the next 3 months or so while I see if the azithromycin helps at all.  I went back on the mino after stopping it when starting azithromycin because I thought it would help with the inflammation.  Should I stop the mino and  just take the azithromycin?  I just don't know what to do at this point. 

ReesaK

 

 

 

 

[nspiker]

Hi Reesak,

I was diagnosed with lyme, and like you,  question the diagnosis at times.  What I do know is that there is an underlying infectious process, that treatment has helped. 

This is my opinion on the pred, but know, I do not have extreme pain, and never took prednisone.  Others that have tried to ween off the pred too soon experience increased pain, as you have.  Inflammation can prevent the antibiotic from reaching it's source, so reducing inflammation is key.  If your llmd recommends staying on 5 mg. pred, then I would follow his advice because it will keep you comfortable and the inflammation down.

You posted, in another thread, that you thought the minocin was working, so I would keep with it.  I'm on babesia abx, but still take minocin, sometimes just one in the AM.  For me, it helps with the inflammation (and probably the mycoplasma).

I assume you've tried Aleve and Naproxen and Mobic.  Maybe others can give their opinions, but I would stay with the pred for now, and ween slowly, AFTER you begin to get some relief from your lyme treatment.  If you're on the right abx for lyme or co-infections, you should see results within a few months.

Yesterday, had an appointment with an homeopath for electrodermal testing to make sure my treatment was on track.  She said my main issue was inflammation in connective tissues and recommended a few products that resonated for me.  It may not be enough for you, but I can give you the names of these products if you're interested.

nancy

[nspiker]

Reesak,

Are you seeing an ILADS LLMD?  Have you been diagnosed with an co-infections?  The reason I ask is because taking Zith for three months, without adding in any other abx seems very conservative.  Most lyme patients are on two and three abx at once.

nancy

[reesak]

I don't believe he is a ILADS doctor but he treats many patients with Lyme in my area.  He wants to me to be on the Zithromax for 3 months until he checks my progress and said that after 6 months we will know whether it is working or not.  He said I may be on it for up to 18 months.  I did have a positive titer (1:80) for erlichiosis as well.  I just don't know if I believe that this is Lyme and not RA when at times I can't even move my joints because they are so painful.  My pain and lack of range of motion just doesn't seem in proportion to what I have read about Lyme but my blood work doesn't scream RA either (my RF is 58 and CCP 15).  I know you can have seronegative RA as well, so I guess the blood work isn't always indicative. 

 

I am going to see what happens in the next week and I may have to go back up to 5 mg of pred which is awful because I know what it can do to your body.  I'm sorry if I sound so down but as you know there can be days that you just don't want to get up in the morning. 

Thanks for your suggestions.

ReesaK

[Donna RA]

Reesak,

My LLMD wanted me to get off Pred too.  I was on a low dose like you trying to wean off, and in alot of pain, with alot of inflammation too.  I was switched to hydrocortisone (cortef) in place of the Pred.  It wasn't prescribled by my LLMD, but I'm hoping that he doesn't tell me to get off of that too, becuase my Adrenals need the support.  Maybe you can ask him about using that in place of Pred?

Good Luck,

Donna RA and Lyme

[reesak]

thanks for the reply, Donna – I did mention to my doctor about prescribing hydrocortisone and he said that he would have to prescribe a high dose in order to control my inflammation and that it would be just as bad as prednisone.  How are you doing on your meds and how long have you been on them?  I am SO not patient and I know I have to be.  Do you migratory joint pain and swelling?  Mine seems to be a new joint every day. 

 

ReesaK

[eann]

Hi Reesak,

I am positive for Lyme and Dx. with RA. You asked if prednisone helped. It was the ONLY thing that helped me with the pain and fatigue. I weaned myself off of it before I saw the LLMD. It is extremely difficult to come off of because of the rebound inflammation. If your LLMD says to stay on 5 mg. and that keeps you functional, it may be best for now.

Lyme treatment is long and difficult for many folks. It may take months to start helping. I've been treating for 6 months now and seen little improvement with the pain. I am not the standard case though as my LLMD believes I have had Lyme for 40 years.

I have also tried many of the standard RA drugs before testing positive for Lyme, including Enbrel, and none of those worked either. If fact, they did make me much worse.

I wish you the best, but there is no quick or easy solution with these illnesses. Only you live in your body and know when you need to change things up. Your doctor is right about Cortef. The dosage that supports your adrenals will not help much, if any, with the inflammation.

[reesak]

thanks, eann – for RA I have taken sulfasalazine (gave me horrible headaches so stopped after a month) and Methotrexate for 1 week (never felt so terrible in my life even on a low dose of 10 mg) so stopped that as well.  My rheumatologist was so surprised that I couldn't tolerate the Metho and that right there made me question my RA diagnosis and the cause for it.  My labs also are not very significant with RA (never had elevated CRP or ANA) and my RF is around 58 and CCP around 15, so not screaming RA. 

 

I'm curious, why does he think you have had it for 40 years?  The reason I ask is that in 1997 or so I went through a period where I had body wide muscle aches, SEVERE insomnia (would only sleep 2 hours a night) and major brain fog.  I eventually was diagnosed with fibromyalgia and put on Amitripytline and within a year or so I was better, but I just wonder sometimes if I had Lyme even then and for some reason my immune system fought it and it laid dormant in my system until now.  My doctor has no idea how long I have had mine.  I have no history of a tick bite or rash, just severe fatigue starting in the spring of 2009 and then woke up one day and couldn't walk on my feet in April of 2009 and then RA diagnosis in 7/09.

 

What do you take for pain now? 

Sorry to ramble.  Thanks for your input!

ReesaK

[eann]

I went camping for a month 40 years ago, as a kid. It was in southern Missouri. I was bitten by a tick, but didn't think much of it back then. In the next couple of years. I had many classic symptoms of Lyme, but no one ever made the connection.

I had a severe febrile illness that required hospitalization for a week. I had a seizure out of no where. I had symptoms of arthritis that were dismissed. I was dx. with a stomach ulcer which was likely an infection. I was also dx. with ulcerative colitis which was likely an infection. I had retinopathy for no known reason, resulting in the loss of sight in one eye.

All this happened over the period of 3 years, with no logical explanation from the doctors for any of it, in an otherwise healthy kid. I went on to live a fairly normal life with a lot of disconnected symptoms that never made much sense. I think I had a strong immune system that fought it off for a long time. I was 37 when I became totally disabled by all the so-called disconnected symptoms. Dx. with FMS, CFS, RA and possible MS.

Sounds like you may have fought it off too for some years. If only there were good tests and doctors would actually look for tickborne illness routinely, people would not have to become so severely affected. Early treatment could change so many lives.

[Velouria138]

[Donna RA]

[user=2332]reesak[/user] wrote:

thanks for the reply, Donna – I did mention to my doctor about prescribing hydrocortisone and he said that he would have to prescribe a high dose in order to control my inflammation and that it would be just as bad as prednisone.  How are you doing on your meds and how long have you been on them?  I am SO not patient and I know I have to be.  Do you migratory joint pain and swelling?  Mine seems to be a new joint every day. 

 

ReesaK

Reesak,

I've been on the Lyme treatment for a little over 1 yr, and prior to that on AP for almost 4.  I am noticing improvements in joint mobility slow and steady, and also pain. I do take 30mg cortef daily, but my Doc (not LLMD doc) insists that it won't interfere with my Lyme meds, or progress in healing. I don't get so much swelling now, however, I do get migrating pains, but not nearly as bad as it once was, and not daily by any means.  I think I would stay on the Pred until things calm down alot, but that is just my opinion, 5mg is not such a huge dose, and it helps to keep things calm.

Good luck with your decision,

Donna RA and Lyme

 

[reesak]

Velouria – I did get tested through Igenex and it came back as positive by Igenex standards on the IgG Western blot but not IgM.  I also had a positive titer for erlichiosis.  I trust my doctor as he is a well respected doctor in Minnesota and treats many Lyme patients and is very good about treating each individual according to their needs.   

Thank you to all of you for your comments.  For some reason I feel guilty about being on the prednisone as I don't want to become dependent on it; however, I know that I need to function for my family and that this will be a long road to recovery so I guess I need to do whatever it takes to get well!!  So, if needed, I may go back up to 5 mg for now. 

I appreciate all the support.  It really helps me get through the tough days!!

ReesaK

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