Need help for a little girl with severe lyme/RA

[nspiker]

I am reposting this at the request of a lymenet member, who is friends with the mother. Josie is a thirteen year old girl, who has severe RA and lyme. She has been forced to utilize some traditional rheumatological drugs because of the severity of her RA and deterioration of her joints. If anyone can provide any feedback or advice to this mother, it would be greatly appreciated.

thanks, nancy

You remember Journey4Josie?

Well, Josie’s mom is asking for our help again.

She says, “I’d like to know if anyone that has gotten arthritis from lyme has ever had any joint straightened that was permanently “stuck and didn’t bend” before.

I’d also like to know if anyone was ever treated as though they had systemic arthritis or was given Actemra or Orenzia for the arthritis.

And I’d LOVE to know if anyone having arthritis had ever had any MRIs done and the results showed inflammed or severely inflammed sinovial tissue and very little scar tissue or fluid. This could be any joint, knee, ankle, elbow, wrist, kneck, hips…anywhere.”

Any insight we can give this mom would be greatly appreciated!!

[Eileen]

@nspiker wrote:

I am reposting this at the request of a lymenet member, who is friends with the mother. Josie is a thirteen year old girl, who has severe RA and lyme. She has been forced to utilize some traditional rheumatological drugs because of the severity of her RA and deterioration of her joints. If anyone can provide any feedback or advice to this mother, it would be greatly appreciated.

thanks, nancy

You remember Journey4Josie?

Well, Josie’s mom is asking for our help again.

She says, “I’d like to know if anyone that has gotten arthritis from lyme has ever had any joint straightened that was permanently “stuck and didn’t bend” before.

I’d also like to know if anyone was ever treated as though they had systemic arthritis or was given Actemra or Orenzia for the arthritis.

And I’d LOVE to know if anyone having arthritis had ever had any MRIs done and the results showed inflammed or severely inflammed sinovial tissue and very little scar tissue or fluid. This could be any joint, knee, ankle, elbow, wrist, kneck, hips…anywhere.”

Any insight we can give this mom would be greatly appreciated!!

I’d like to offer some info. that’s similar to this mom’s asking, but am not sure what is meant by ‘joint straightened that was permanently stuck and didn’t bend’ before.

I did use Enbrel for a very short period as a last ditch effort w/o benefit. I did have an MRI done on my right knee, which revealed advanced stages of arthritis requiring a replacement (sometime up the road). Unfortunately, MRI’s do not tell us what sort of arthritis it is. My knee was scoped over a yr. ago and there wasn’t much fluid in there, but lots of damage and inflammation. Culture of what fluid they could get returned as “inflammatory cells” which were non-specific, as I had been on abx. quite some time. I had an MRI done on my SI joint which revealed ‘synovitis.’ Although I’ve been diagnosed w/PsA by two rheumatologists, I’m a really tough sell on that diagnosis. I believe it’s Lyme arthritis, presenting itself as PsA. Either way, I’m doing AP. No biologics for me with an underlying infection.

I do know a dr. who could get to the bottom of this and figure out what’s going on with this girl. My son’s dr. in CT. Is she willing to travel?

I know what I said isn’t much, but I hope this can help this girl. I can’t stand to see kids hurting like this. Ask her to PM me if she needs anything further.

Eileen

[nspiker]

Thanks Eileen,

I will make sure she gets this information. This little girl is now 14 years old, weighs less than 60 lbs., and is in a wheelchair. Her LLMD is Dr. J, which might be the doc you’re referring to. The problem, from the little I know, is that there is severe joint damage, and she is forced to juggle lyme treatment and protecting her daughter from further joint deterioration.

She’s really interested in speaking with someone that has had surgery to straighten out a joint, so I’m hoping Parisa jumps in, as I think her husband had that surgery on his arm.

Thanks for your offer to help….
nancy

[Parisa]

Hi Nancy,

Sorry to say I don’t have any answers for this little girl. My husband’s surgery was for ruptured tendons. Even though an MRI was done, it did not pick up the fact that all of the extensor tendons in his left hand and forearm had ruptured.

[nspiker]

Thanks Parisa….

[nspiker]

I spoke with the mom to relay that we do not know anyone who has had surgery to straighten limbs.

She said that that their Rheumatologist has never seen a case like this before, and that her child has broken every rule in regard to traditional treatment. Josie is on Remicade and methotrexate, and continues to have further deterioration. She just learned that she has delimination of the cartlidge, and it is pulling away from the bone. She also has severe inflammation of the synovial tissue. She has been diagnosed with systemic arthritis, and mom said that Dr. J. LLMD believes she has both lyme and arthritis. Arthritis runs on both sides of her family.

The good news is that mom was able to get an appointment with a Pediatric Rheumatologist LLMD in New Jersey. Her current Pediatric Rheumatologist has admitted he doesn’t know what to do next, and has agreed to work with this Ped LLMD. I hope that they can work together to find a solution for this little girl.

They want to do a knee replacement, which mom does not support. If anyone has any ideas or feedback to offer this mom, it’s greatly appreciated. This is their website: http://www.journey4josie.org/

thanks, nancy

[Eileen]

Nancy,

I wish I could have helped this mom more. Is her daughter seeing Dr. F or Dr. G? Thank God — a LLMD RD — best of both worlds. It’s so hard to see us suffering from these diseases, let alone a kid. I can’t stand it. I know what I went through w/my son as we both fought the disease together for yrs.

Eileen

[Parisa]

Nancy,

I went searching through the medical records last night trying to find the MRI report but I haven’t found it yet. The doctors had never seen anything like my husband’s arm. They would look at it and just shake their heads. It started as swelling in the wrist and eventually his whole lower arm became inflamed from about 5 inches above the wrist to a couple of inches below. In the surgical report the orthopedist states the MRI which showed severe inflammation of the tenosynovial tissues (swelling of the synovial tissues of the tendon). My husband was doing IV Rocephin when this first started and it didn’t touch the inflammation. His arm was inflammed for about 9 months. We believe the Bicillin shots were what finally helped but in truth that it just guessing as he was also doing IV Zith, IV Flagyl and Malarone.

[nspiker]

Thanks everyone 😎 ,

I spoke to Maz yesterday, and she had the thought to recommend Stem Cell Therapy in Panama to mom. She said they have had success with both RA and lyme. (To make matters more complicated, this little girl’s parents are divorced, and the dad doesn’t believe it is lyme, but pure RA). So, the mom has to fight an uphill battle. The stem cell therapy might be able to accomplish both issues at once, or at least get her immune system regulated.

Eileen, The Rheumy LLMD is Dr. A. G. in New Jersey. I think she was referred and got in quickly, because she sees her next week. Mom thinks it’s the first break she’s gotten in this up-hill battle. Mom has advocated, in the Pennsylvania house of representatives, for lyme treatment and Josie is the face of the Arthritis Foundation Jingle Bell Run in PA.

Thanks Parisa for looking up that info. I’ll cut and paste and send it off to mom.
nancy

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