Lyme causing Psoriatic Arthritis

My cousin has psoriatic arthritis.

She claims she "only" has fibromyalgia, even though she tested positive for Lyme (at one point).

She got so sick from the fibromyalgia (for lack of a different word), she had to move into assisted living.

She lives in Switzerland, and she tends to see conventional doctors.

I would just do a Google search.

Margaret

about 2 months ago, a respected rheum (who insists 100% the Lyme is gone) put me on Plaquenil to see if It would help continued lyme symptoms b/c he was sure they weren't lyme sx, but perhaps Lupus sx.
Well, Plaquenil floored me.
Within the first day, i felt awful.
I took it for two more days and declined severely, and was completely bedridden. I stopped taking it, called his office & was told just to 'observe' my symptoms.

I was having horrible shin bone pain and arm pain and called his office ( there were other sx, but cant think of them now, just felt like garbage, like lyme was definitely back).
Finally got all spinal MRIs done and saw my rheum this week.
I am very limited in my physical abilities due to my many severe spinal problems.
Rheum said it looked like spinal arthropathy - an ankylosing spondylitis type arthritis.
He told me not to worry b/c the pain is not all in my head.
He also said plaquenil can make this type of arthritis worse, therefore explaining why i did so poorly on Plaquenil.
He felt I should try Otezla, a drug for Psoriatic Arthritis.

I started it 2 days ago & my acute lyme symptoms are all coming back ASAP!

no matter how many times I have told rheum that I never had these symptoms until my acute lyme,
He will just not hear of lyme being a continued possibility.

But, it is certainly hard to move forward with rheum to find out what is really wrong when he REFUSES to even consider Lyme.

Can you all please weigh in, I feel so lost right now.

Post Edited (Usedtogarden) : 6/25/2015 11:39:05 PM (GMT-6)

Hi Traveler :) thank you for responding.
Thank you to teragram, too:)

I want to treat the Lyme, but I am wondering if i did have ankylosing or psoriatic arthritis pre-Lyme,
and the Lyme just made it worse, and maybe the lyme is not still there ???

That is what I am trying to figure out.

While on Rocephin, the leg pains came back at month 2/3. I stayed on Rocephin another two months beyond that.
So, that made me think those pains may not be just lyme, even though that is when the symptoms started.

Could they be viral?
Could the sx be Bart or Babs?
OR
Did Lyme lower my immunity and make these original arthritic worse?

Is there any way to know for sure?

I'm also wondering if Plaquenil or Otezla are known to make lyme sx worse- that way I know for sure the lyme is still there, or bart or babs, for that matter.

Post Edited (Usedtogarden) : 6/26/2015 1:19:44 PM (GMT-6)

Have you looked into reactive arthritis?
https://en.wikipedia.org/wiki/Reactive_arthritis
There are a few nasty bugs like salmonella that in the normally healthy person is self limiting, but just like Bartonella new evidence is showing it can be a long term intracellular pathogen. I think the possibility of this increases with someone who is immunocompromised, like with Lyme.

I use Salmonella as an example because up to 30% of people who get food poisoning from it will develop reactive arthritis. Of those 30% a small number (I think around 10%, I'm not sure) will develop long term chronic arthritis.
It is important to remember a lot of people don't get the conjunctivitis or urethritis many will have only joint pain.
I had this happen to me twice last year after I was catching crawdads with raw chicken and not really washing my hands while eating chips etc., stupid I know. The funny thing is that in the end it was taking probiotics that helped me get over it.
The pain was very intense and debilitating, it was sharp and burning over my left SI joint. There was no injury or accident to have caused it, both times it started the next day after exposure and all orthopedic test for mechanical problems came back negative. I haven't had it again because I am now very diligent about washing my hands after touching raw chicken.
I am going out on a limb here but I would guess that what you are experiencing is a symptom of a coinfection that is not typically seen with Lyme, something you picked up later after the Lyme took its toll on your immune system. I almost forgot to mention that mycoplasma are known to cause arthritis too.

Post Edited (gregkdc) : 6/26/2015 4:07:10 PM (GMT-6)

Thank you everyone. This information helps very much.
I will go back on the Lyme tx and see what happens.
I really value all of your opinions and points of view.
I feel much stronger in my direction now.

I am still shocked that over a years worth of oral abx & 5 months of IV Rocephin may not have been enough to defeat Lyme.
This is so shocking to me. I was hoping very strongly to be done with tx.

I saw another highly credited rheumatologist yesterday & after hearing most of my history from my teen years until now dx'd me with Fibromyalgia.
I didn't take him seriously at all, even laughed about it.
I was already having many problems pre-lyme for decades.
Later in the evening, I looked up Fibro sx on webmd & cleveland clinic.
I also did image searches which show entire maps of the body and it's systems & how fibromyalgia can effect each system.
And, I stopped laughing....
Because this was me, EXACTLY!

It could be why my acute Lyme infection was so, so bad - Wheelchair bound, couldn't hold my head up, needed carried, constant nausea & vomiting, no sleep,lost vision, etc.
Of course the late dx (2 months) didn't help.
Fibromyalgia could be why I am worse than I was before after Lyme.
Sure, I do believe the severe acute Lyme infection did extensive, irreparable damage.

Yes, I still have Osteoarthritis, a Degenertive Spine & Discs possibly from Ankylosing Arthropathy and/or Psoriatic Arthritis.
This Fibromyalgia dx makes sense to me.
I can go back and recognize triggering events.

It pieces everything together from decades past to present moment in my life.

Just wanted to update & mention that this is where I am today.

Post Edited (Usedtogarden) : 10/22/2015 12:21:38 PM (GMT-6)

I agree with you, astroman. gregkdc also made some very interesting points regarding other atypical coinfections & the power of probiotics. Very interesting.

I don't think they have answers as to why & how & what causes Fibromyalgia,
but I can't deny that it is exactly my identifying picture.
It is also the 2nd time I have gotten this dx.
The last time was 1-2 yrs pre-lyme (3-4 yrs ago) but I didn't want to hear it b/c I felt like it was an excuse to not really search for the real cause & the only way this pcp wanted to treat me was w/ Cymbalta. No thanks, I didn't want it. I still won't do cymbalta or immune diminishing rx's.

What's working best (rx-wise)for me is:
Claritin
Zyrtec
Singulair
Pepcid
Celebrex
Doxipen

And this was rx'd to me by my LLMD who found that treating Mast Cell Activation Syndrome for Lyme patients greatly reduces their symptoms. This protocol has given me the best results I have ever had over the past 23 yrs.
This has had a hugely positive impact on my health and well- being.
With this type of tx, I can have a local rheum continue to write my rx's which saves me travel time, gas, and cash visits to my LLMD as the rheum takes insurance.

There surely isn't a reason for Big Pharma to 'find' and give us all of the answers to Fibro b/c they stand to make so much money treating it's symptoms.

I am thinking that I am going to keep Buhner's supportive herbals in &
Sweet Annie (artemesia annua- full plant) see what happens and go from there.

The worst that can happen, is that I have to go back into killer herbals.

Either way, it's a crappy dx to receive.
It's a treating for life kind of dx.

Any other thoughts?

Did anyone else have Fibro pre-Lyme?

Post Edited (Usedtogarden) : 10/22/2015 3:21:07 PM (GMT-6)

I don't think all Fibro cases are lyme cases, either.
Did someone say that?

Thank you for adding that, Traveler.
It is an important point to make.
I believe Fibromyalgia is a real disease/syndrome that is separate from Lyme, and sometimes caused by Lyme or viruses, etc.
I wish it was just Fibro & not Lyme, too.
I despise spirochetes, the monsters inside us.

Post Edited (Usedtogarden) : 10/22/2015 10:41:41 PM (GMT-6)