Those that were DX with RA and then with Lyme..

[tbird2340]

So I was DX with RA and pretty much started AP from the get go.. Was on AP for about a year with basically just a Dr. who prescribed the mino..

Went and had Igenex labs done and then made an appt with a LLMD who gave me a Lyme dx.. Now, I didn't think it made sense to continue going to my AP doc since the LLMD was going to be giving me the same drugs (abx) only in larger doses so I currently just go to a LLMD..

My question and issue is… I'm in a pretty good amount of pain right now.. More then I ever have been. My right wrist feels like it's almost broken at times. I'm *guessing* it's because of the increase in Mino (went from 2x a day MWF to 2x a day everyday) and this week I'll be adding another abx..

For those who have been DX with Lyme that had/have RA.. What did you do for the pain? Did you go to a rheumy (I wouldn't think so)? Did you ask your LLMD for pain meds?

Thanks in advance!

Tom

[reesak]

Hi Tom – I also was diagnosed with RA in 7/09 and just a couple of weeks ago was also diagnosed with Lyme.  I was taking minocycline 50 mg once daily and prednisone 5 mg daily for the past couple of months with pretty good pain and swelling control (I was only on 50 mg of minocycline because 100 gave me headaches initially so I was going to titrate up slowly to 100 mg daily).

 

My doctor who is a medical doctor as well as a functional medicine doctor and is Lyme-literate wants me to go off the minocycline and start Zithromax daily for 3 months and then reassess.  Ideally according to him I should not take prednisone but he said at the low dose that I am taking it that if I need it to function to go ahead and take it and try to taper down on it.  I have read that people with Lyme should not take steroids but he said at that low dose the antibiotics will still work and it shouldn't cause my disease to advance.  I'm going to try to wean off of the prednisone in the next couple of months and then I suppose go back to taking ibuprofen or something like it for pain.  I do also take Extra Strength Tylenol sometimes even now when I have increased pain and that seems to take the edge off.

Just my experience.  Hope this helps. 

ReesaK

[Trudi]

Hi Tom–

Indomethacin has been my pain med.  I've tried different supplements with varying degrees of success.  Of late, I've had a lot of pain on and off the supplements so we have decided to take me off all except the glucosamine/MSM.  My doctor said it will take at least 3 months to totally kick in.  We'll see.

I think the pain is coming via herxing.  I've had an ugly rash for over a year

http://img69.imageshack.us/img69/5467/005lfw.jpg

which has recently faded to almost nothing.  I always said it was a visible manifestation of my bacterial load, and if this is the case, I've just had a hell of a lot of bacterial die off!!

Wishing you all the best,

Trudi

 

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Maz]

[user=851]tbird2340[/user] wrote:

My question and issue is… I'm in a pretty good amount of pain right now.. More then I ever have been. My right wrist feels like it's almost broken at times. I'm *guessing* it's because of the increase in Mino (went from 2x a day MWF to 2x a day everyday) and this week I'll be adding another abx..

Hi Tom,

I know this is rough when the herxing really gets going, but try to remember when you were worried that you weren't herxing and your labs weren't moving during your first year. 😉 This early period of herxing is downright nasty, but it's a good indication that you're hitting those bugs good and hard now. Btw, I know the “broken wrist” feeling…actually felt like I had broken glass in all my joints at one point early on and I was bedridden. Over time, this should get better….my turning point was 3 months in, when all my labs started responding and I was getting windows of light in symptoms.

I basically managed on just Advil gelcaps as my LLMD didn't want me on anything stronger and I wasn't pushing for rx'd pain meds, as I was at home and didn't have young ones to look after. Your situation is different, however, so you should contact Dr. S in PA and ask him for guidance on pain relief and a script, if necessary. The trouble with we rheumatics is that too much inflam is counterproductive.

Has your sauna arrived yet, Tom? This should really help with the pain and inflam, too.

You mentioned looking for a more local functional medicine doctor…this isn't a bad idea. Some people do build teams of docs to address different things. A functional med doc will also be looking at contributing factors to your illness, like hormone imbalances, diet and such, which can only be a bonus in a holistic sense. There are lots of factors involved in chronic disease and while targeting the infections is one of the most important aspects, getting the whole body in balance again will provide important immune support. If you can get one of these docs covered by your insurance, too, then that's a plus, but ideally it needs to be a doc who supports your treatment choice, too. Most functional med docs do believe in chronic infections compromising immune function, so hopefully this won't be a problem.

Peace, Maz

 

[Michele]

Hi Tom,

What does your doctor have you doing to detox?

In my move to a lyme protocol, the detox elements are key to easing my pain. Detox was the main focus. My doctor is pretty cautious about having anyone herx too mightily. Another key piece for me is that I start with very small doses and ramp up very gradually.

Does your doc know how much more pain you are in?
Does your pain ease if you skip a few doses of the abx?
If that happened to me, I would know it was die off reactions for sure and then either do more detox or lower the abx.

My doc is a rheumy, LLMD and functional medicine doc rolled into one. She is a very rare breed of doctor.

Michele

[tbird2340]

He hasn't even talked to me about detoxing. 🙁

What do you do to detox?

Thanks for the replies! 😀

[eann]

I was dx with RA first, then Lyme. I still see a rheumy and he prescribes my pain medication for me. Only thing he still prescribes. He knows I am on antibiotics from another doctor, but I don't go into Lyme with him too much.

I have had a huge increase in pain since starting the Lyme protocol. I think when you have RA already, too much antibiotic can cause a severe herx. AP for rheumatic diseases is much slower and easier. When I was first on only a low dose of Doxy, I saw some improvement. Now, it's mostly just herxing.

You may not be able to take really large dosages of antibiotics. My LLMD believes in keeping the herx mild. Maybe you can talk to your LLMD about using lower doses and getting a prescription for pain control?

Lyme is a whole different beast and if you look at some Lyme boards, even those without autoimmune issues are having a hard time .

[Author]

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