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Hello everyone,
I’ve been using AP for almost 6 years, stopping the progression of diffuse scleroderma (scl-70 ab) with lupus overlap, and reversing many signs of the disease. Other than a reaction to a new med and possible TIAs (mini-strokes) causing reading & writing issues, I’m doing well. Now it’s my husbands turn.
After an arm injury last summer requiring IV abx, my husband began to have severe, debilitating, migrating joint pain. Fast forward to November, he was correctly diagnosed with Palindromic Rheumatism. His lab results for RA (RF, CCP) have been high on occasion since 2014 with no signs of the disease. However, latest labs show his CCP to be off the charts, >250, his RF is high at 35, and his CRP is high at 65.7. He also has Graves Disease, in remission since 2014 on LDN, and a cardiac history.
I was able to get an almost immediate appointment (within 3 days) for him with an LLMD/rheumatologist who is a past president of ILADS and about 20 minutes from our home. She ran a full Lyme panel and the results just came in today: negative for Lyme and co-infections. I’m surprised and not surprised as I know that Lyme is stealth. He did test CDC positive for Lyme in 2015 after an indeterminate result from Igenex in 2014 but we don’t have the CDC results and that doctor has since passed. The local LLMD said she would treat him with the usual; methotrexate, biologics, etc….but we can’t let that happen. I asked the nurse/receptionist for the local LLMD if the doctor tested for mycoplasma fermentans, c.pneumoniae, or other possible triggers and she (not pleasantly) snapped that the doctor knows exactly what to test for, so it’s my guess those tests were not included.
Today, I was able to make an appt for him with my LLMD in CT for the end of March. In the meantime, he is suffering terribly as there are much shorter gaps (a day or two) between the painful migratory attacks. I put in a call to our rheumatologist and I’m waiting for a return call, hoping she’ll agree to prescribe Plaquenil.
My question is for any Palindromic patients on the board: Will Plaquenil help? He has been prescribed prednisone 20mg and it did help but there are too many solid reasons not to take it. Still, as any with PR know, the pain is horrific and he needs some relief. NSAIDS and even Vicodin don’t work at all.
Many thanks,
CalidaDx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
SupplementsMy husband has also a migratory joint pain. When his wrist was swollen two weeks ago he went to the doctor. After Prednisolone and a strong Augumentin he was OK but after one week his knee was in pain. All Labs showed the elevated ESR and CRP but RF and anti CCP were in order. He was diagnosed with pseudo-gout. His uric acid was normal. I think that Prednisolone and Augumentin were not necessary and he is doing better with Mobic when an attack comes.
RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousLinda, thank goodness he gets some relief from the Mobic. My husband uses Naproxen but it only takes the pain down from a 10 to a 9.5
Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
SupplementsMy first thought is that the arm injury requiring antibiotics either jump started something or rekindled something. So often people can trace back the beginnings of their symptoms to a trauma whether physical or emotional. I am assuming the antibiotics helped and he healed up nicely? I wonder how they knew which antibiotic to use for his arm? Was it a guess or did they try to grow out a culture? What if the antibiotic did not eradicate the bacteria from the arm and his body is mounting a defense attack? I know you have already thought of this but I am just typing out loud. Just trying to think.
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWFMy husband uses Naproxen but it only takes the pain down from a 10 to a 9.5
I had a similar experience. In the early days, shortly after the joint and muscle pain started, large doses of ibuprofen barely put a dent in my pain. What did make a big difference, though, was to stop eating all dairy products and all nightshade vegetables. As luck would have it, I learned about the connection between nightshades and arthritis in a horticulture course I took just a few months before my symptoms hit.
For more info on nightshade vegetables, see:
https://www.roadback.org/forums/topic/the-no-nightshades-diet/[The third link in that post is dead, but the first two links are still good.]
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinPhil, dairy – does it include butter? What about eggs? My husband loves eggs.
What also we are sure helps him is Fibroplex MagActive. It contains magnesium,, zinc, vit. B6 and chromium. Like you Phil he has pain in joints and muscles as well.
RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousPhil, dairy – does it include butter?
Yes, unfortunately. However, a little clarified butter (ghee) may be okay.
What about eggs? My husband loves eggs.
Eggs are fine (at least they are for me). I did notice a long time ago, though, that I seemed to be a little sensitive to eggs, so I only eat them occasionally. However, that was when I was a teenager, long before I got sick.
Here’s something I noticed from eating regularly at a buffet restaurant: If I eat cookies or pie that contain eggs but no dairy, I am fine. But if I eat a brownie (or fudge) that also contains milk, I will likely regret it later, especially if I eat more than one.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinInteresting, thank you.
RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousSpiffy, you’re exactly right. His first infection was 24 hours after the arm (deep cut) injury and he was treated with oral doxy, no culture taken. Weeks later, he developed elbow bursitis larger than a golf ball a few inches from the site of the deep cut injury. I couldn’t visit the orthopedic with him but warned him not to let them drain the fluid from the elbow. They insisted and, within 24-36 hours, he was diagnosed with MRSA at the site of the elbow drain puncture with a large red streak up to his underarm. He spent 12 hours on doxy IV, was released from the ER, and all was well until about 6 weeks later when the palindromic pain started and labs showed the RF and CRP high with the CCP off the charts.
What infuriates me is that I gave the ILADS doc my husband’s Igenex results which had positive bands 31, 39, 41 IgG. Her lab’s results for my husband showed positive bands 28, 37, 55, and 58 IgG. Right there, combining the 2 results, my husband has 4 of 5 bands to satisfy a CDC diagnosis of late stage Lyme (Bb). Combine these bands with his clinical presentation and RA labs, my husband should have started abx treatment immediately. Instead, she said he doesn’t have Lyme and offered methotrexate.Phil, thanks for the advice about dairy and nightshades. Thankfully, we gave up nightshades (except for the occasional tomato) when I became ill but it will be hard to break him from dairy. I think his mindset will change after he starts abx and sees some results. When he feels a little better, he’ll want more of that feeling and that will be the time to press the dairy issue. He’s still a bit depressed from the ILADs doc experience and we can’t see my Lyme doc for another 6 weeks.
Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
SupplementsCalida, sorry to hear about your hubby. This really sucks! Would you mind kindly PMing me the ILADs LLMD he saw – I’m thinking it may have been Dr. G? This all sounds like you’re saying the staph-induced cellulitis from the injury may have set off latent Lyme? Is that what you’re thinking?
There is no way in this world not to identify that arm trauma with his current problems. Excuse the double negative. Oh yes. When an immune system is traumatized by a physical stress even without bacteria involved can prove to lead to these problems. But couple that with MRSA and there it is on a plate. I surely hope there are some doctors he can see that won’t compartmentalize to such a great degree and will start looking for this rogue infection. And yes again. Many people can have Lyme until their body is put under duress it stays controlled. It can be mental or physical or a combination of both. The immune system throws its hands up and just starts exploding hoping it catches something. The immune system becomes like a tired policeman trying to patrol but not able to see what he or she is supposed to protect. Hmmmm. What about an ASO blood test to see what that might show. I don’t know. I just hope you have some doctors that are going to fight this with worthy ammunition and not just placate the body and immune system.
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF
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