Hi everyone!

General
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I'm SK! For those of you who do not know me, I have been a moderator on the Ben's Friends groups, Fibromyalgia, Psoriatic Arthritis, and Lupus. I also belong to about a dozen total groups, and this is one of them. I joined along with my friend Jen, the founding moderator, I have known her since I joined the fibro site a couple of years ago.

When my Mom fell down the stairs about 5 months ago, breaking a hip, it was necessary for me to give her my undivided attention, care and help, she is now doing pretty well for her age!

With my return, I am helping out my old friends Jen here on Lyme, and my friend Terri, on Sjogren's Syndrome, as well as our new mod support, and my new friend, dancermom.

I have Psoriatic Arthritis, Sjogren's Syndrome, Raynaud's Phenomenon, and Fibromyalgia, as well as a list of other ills. Though I do not to my knowledge have Lyme, I have 2 systemic autoimmune diseases, so can relate in that way to your disease.

Hopefully we can give this community a boost for you and get things going again.

I am open to comments, questions, and certainly any information!

Wishing you all well,

SK

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Welcome, SK! Glad to have you here.

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Thanks dancermom, glad to be here!

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Sounds great!! The support is really nice!

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Thanks Ana, I have a long way to go to understanding your meds, but am beginning my search! Any good places to start?

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Hi SK. Thanks… For helping !!! What I have found to assist me with learning about the medications for Lymes is very simple. Like many I just google treatments for Lymes. There is a plethora of information on the net. From Oral to IV to Injectable treatment. There’s also a lot if different protocols that different doctors have discovered to work for their patients. If I can help in any way please let me know. Since I’ve been dx with Lymes and the Co- infection anaplasmosis… My family and myself have become honorary medical advisors on this disease lol ;how to find a LLMD, different modes of treatment etc.

There is one thing I would like to mention that will give people with Lymes disease a better understanding as to why it is so hard to find a doctor to treat Lymes disease , leaving us no other alternative to seek out LLMD’s and spend tons of money… Go rent the movie " Dallas buyers club" and every time you hear the words HIV come out if the actors voices to substitute that word for " Lymes". It answered a lot of questions I was struggling with and could not make sense of.

Hope you are feeling well and take good care !!

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Dear Adriene,

Yes, I have seen Dallas Buyers Club, am a huge Matthew fan. What a heart breaker, my baby brother died of cardio myopathy induced by AIDS. So then I have already traveled this road for 11 years. My mom and I did EVERYTHING we could do to make him well. He had a superior Doctor, or he never would have come off the ventilator at 29 years old!

Well, that just makes me care for you all, all the more!

Thank you for responding, and thanks for 'laying it out' in terms I understand!

Thanks for your help in rebooting this most important group! Hope to see you back on the boards soon and looking forward to getting to know you!

Wishing you well,

SK

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SK, I am sorry to hear about your brother's passing. I have a dear friend here in Tampa whose brother died the same way.

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Thank you, dancermom, I'll always miss him, we were so very close! My oldest granddaughter and I were just taking about him this afternoon, and more than one tear hit the floor!

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Hi SK. Hope today finds you in less pain and some " peace of mind". My heart us with you in the passing if your brother and all that cones along with watching alive one surcome to that disease ( I too lost a close friend due to pneumonia from aids) now here we are again watching tons of people… Ourselves included … Fighting the CDC to receive proper treatment through our insurances. What a shame !! However… We are a string minded group of " Lymes warriors " and we will win this fight and overcome this disease. May I ask what treatments you are taking or have undergone so far?

Hope you have a good day.
Adriene

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Welcome, SK! I appreciate your willingness to guide and lead. Regarding info, I researched Lyme in medical journals and found that even there, conflicting findings abound. For those of us suffering with LD, there are so many frustrations- the most prevalent is the denial of this disease by the medical establishments. Many if not most of us have been told we are flat-out crazy. That the pain isn't real. To just "calm down" and accept that LD does not persist.

My theory is that doctors, even LLMD's, have a hard time with LD because it is difficult to measure progress with treatment. Testing is rudimentary at best, and very few assays exist to determine which functions of the body are affected by Lyme spirochetes.

You are brave to jump in and help us out- thank you for doing so!

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Hi Adriene,

I do not, that I know of, have Lyme. My rare diseases are genetic, Psoriatic Arthritis, Sjogren's Syndrome, Raynaud's Phenomenon, and many related illnesses that seem to tag along.

My most successful med is the NSAID, Daypro, but of course these can play havoc with the liver and kidneys, so I have been told to cut down on them, and have. I took the biologic, Enbrel, which slows the autoimmune patient's hyper over drive immune system down, to slow progression of not only joint and bone degeneration, but of every cell. PsA and Sjogren's are both systemic.

Due to continuing infections, which is one of the most dangerous of the SE of immunosuppressants or DMARDs, I have been informed that I can never take biologics again, though now we're to see if the DMARDs are possible treatment, IF I get clearance from an eye specialist.

Lyrica has been a successful drug for nerve pain, especially good for the Sciatica, though swelling and weight gain are not exactly favored SE, there are worse!

Ethyl Chloride spray is very effective for short term pain relief, it is an anesthetic spray, and when all else falls there is Morphine, though I do not like to take narcotics, I'm glad this is still available to me.

I do have a dear cousin who contracted Lyme in the 1980's, I have lost contact with him, unfortunately. But the last time I saw him he was beyond recognition, had he not approached me, I would not have known him.

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Thanks slmo! Actually I think you all are the brave ones!