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Thu, Apr 18 5:38am · Hip Pain in Autoimmune Diseases

I too have bad hip pain that seems to be related to femur bone pain and can sometimes impact my knees. I have had lymphoma with a lot of different kinds of chemotherapy and radiation and two stem cell transplants. The bone pain started after my first transplant and went much deeper with my second. I also suffer from a compromised immune system and I find it curious that perhaps my hip, femur and knee pain are related to an immuno-deficiency which has been documented. I wonder if anybody else has this kind of pain and also an immune system issue … autoimmune or induced/reactive immuno-deficiency??

Thu, Apr 11 2:28pm · Has anyone used CBD oil for chronic pain? And do you have results? in Chronic Pain

I use a product called UltraCell made by a company called Zyliss and I have found a lot of benefit from it. It's pure CBD.

Mon, Mar 25 4:39am · Autoimmune attacking my lungs in Autoimmune Diseases

Hi John, since your infections are mostly in your lungs, I wonder if any of your doctors have mentioned using inhaled steroids and inhaled antibiotics (like tobrimyacin). These have less impact on tour body systems and focus on the main infection/weakness. I also wonder about immunotherapy helping you, like IV immunoglobulin. Have your IG levels been tested?

Just more food for thought for you… Wishing you the best, what area of the country do you live in

Tue, Feb 19 11:12am · Nausea, Pain and Headaches after Gallbladder laparoscopic Surgery in Digestive Health

@jeffreysgirl13 Having had chem, I very much know what it’s like to eat when nauseous. That said, there are some great medications that can help, like Zoltan, which works on the brain. That might be helpful until you get to bottom on what’s causing your problem. I would go see a gastroenterologist for follow-up. Best of luck.

Fri, Feb 8 3:57am · Infusions for widespread, intense nerve pain, probably due to MS in Chronic Pain

@elsa. I have neuropathic and bone pain from chemo and two stem cell transplants for lymphoma. I also get IVIG to help with a compromised immune system. I don’t feel IVIG does anything for my pain issues…if anything it can sometimes make it worse. Granted I don’t have MS, but I am very informed on my therapies and I have not seen anything about IVIG improving nerves.

I had bone pain from my autologous transplant (using my own stem cells), it only got worse with second allogenic transplant from sister’s cells…so I have my doubts about stem-cell therapy for nerve-related pain. There has been some success with stem cell therapy for joint pain and ligament/tendon injuries, but it’s not a medically accepted therapy yet for nerve pain. Most places offering stem cells for nerve pain are chiropractors with a lower threshold on treatments…insurance won’t pay for it either.

Have you tried Gabapentin, Lyrica or Cymbalta? Some people get relief from these. Also massage which increases blood flow and loosens muscles that tense from pain.

Ketamine is a strong medication used for anesthesia, much like a pain med. I have not heard of IV lidocaine, but it might help…though I would think it would work best administered to the location with the pain. Steroid injections might also help especially if it’s related to nerve impingement from inflammation (maybe from botched surgery?).

Hope my experience helps….Best of luck!!

Mon, Jan 28 4:19am · Medical Cannabis as a treatment for Seizures in Epilepsy & Seizures

I would say don’t be too disappointed as there are many different strains of MMJ with different terpenes that give you different results. It’s a bit trial and error. My son has had good luck with vapes 2 parts CBD to 1 part THC. talk to a good bud tender about your best options…they are the most familiar with different strains and what works for which conditions. Best of luck.

Sun, Jan 27 6:30pm · Erosive oral lichen planus in Autoimmune Diseases

Whole body, complete autologous and allogeneic for lymphoma. Not a stem cell injection, a transplant. I now have my sister’s blood type.

Sun, Jan 27 8:33am · Erosive oral lichen planus in Autoimmune Diseases

I have oral like in planus following a stem cell transplant. Or use a combination of swish and spit dexamethasone (steroid) and Nystatin for yeast because the steroids can create yeast growth. Because I don’t swallow the steroid, I don’t get the impacts on my whole body, just my mouth. I also drink a lot of water all day. I find iced water keeps inflammation and pain down. It has all helped keep the lichen planus controlled and I don’t get so many erosive episodes. I rinse twice a day with the dexamethasone, up to four times when I have a flair. Or use the nystatin as needed when I get a used bloom. Hope this helps someone.