Paralysis

My dear stepmother has apparently had undiagnosed Lyme for 5 years. She is only 66 and was always very active. She has slowly lost the use of all limbs and now is having speech difficulties, plus she's painfully thin. She just started antibiotics. She has found two people she knows who say they too were crippled by undiagnosed Lyme but have now recovered completely. Anyone else have a story or advice? Need all the help and hope we can get. Don't let anyone tell you Lyme doesn't exist in the south - these doctors have their heads in the sand!!

Post Edited (I love my stepmom!) : 3/23/2015 8:48:46 AM (GMT-6)

What about watching Under Our Skin? It's available on YouTube. Or, mayebe it would it be difficult to see the people who are suffering?
It does show some people getting better.

Maybe you could watch it first and decide if it would upset her...rather than help her?

The sequel was good, as it followed up on some people and showed how they had healed.

It's a tough call - because even the success stories...are heart-wrenching as we see them at their worst ....I cried throughout them...so maybe not a good idea.

So, maybe just some forum members' stories would be better.
One of our long-time Moderators, Traveler - she healed herself using herbs, not antibiotics - and she had lyme much longer than 5 years.
I'm sure she will post on here and chime in.

We have another member who has healed recently.
And lots of members who are treating and are at 80-90 % better.

It's definitely treatable. I think the ones who fail are mostly due to giving up the fight.

She is so fortunate to have you...your name says it all "I Love my Stepmom"....thank you for supporting her!!!

Find an ILADS trained Lyme Literate Medical Doctor or Lyme Literate Naturopathic Doctor. Your stepmother can recover significantly from this.

She is lucky to have a caring person to help.

ILADS is International Lyme and Associated Diseases Society. From their website (www.ilads.org/):
"ILADS is a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases."

Where are you located? I bet I or others on this forum can help you find a support group - besides us, of course.

I am so sorry you have to deal with this! Your stepmom is so lucky to have you help her heal! Who is treating your mom, what kind of antibiotics she got and for how long? All this matters, because if she doesn't get enough antibiotics she may not recover, which was the case for many of us here.

ILADS=international lyme and associated diseases society and LLMDs (lyme literate medical doctors) are part of it. They treat patients with long term antibiotics until they recover, not with a month of antibiotics, like the regular MDs.

If you need a LLMD, post a new thread with subject: "Looking for LLMD in ... area" and members can contact you. We do not post name of LLMDs on this forum because several of them lost their licenses because they went against the 1 month norm of antibiotics and treated us for longer and we are protecting them. I was treated for 1 year with antibiotics for Lyme and Barto which crippled me 5-6 yrs ago, and I am almost 100% better.

Most of them don't accept insurance and those that do, don't accept all insurance plans. I had to pay out of pocket but I got my life back and I can do everything that I was able to do prior to being almost bed ridden.

Watch "under our skin"

Was your stepmom ever tested for co-infections? Lyme patients often have more than one tick-borne disease. EG: I've had Lyme and Bartonella. LLMDs are trained to look further than just Lyme and some of them treat and test the patient for mold, parasites, thyroid, adrenals, etc, and really look at patients from head to toe, although not all of them do this.

Post Edited (Simela1) : 3/14/2015 5:53:28 PM (GMT-6)

She is taking three different oral antibiotics, but at moment I couldn't tell you the names. The Dr told her it would take at least three months before any results. Supposedly her doc is experienced with Lyme - she was referred to this Dr by a nutritionist - the one person who thought to diagnose Lyme, because she said she herself had been crippled after years of no diagnosis. I just can't believe that in any room you say "Lyme" and several people have a story about it, yet the Drs say it doesn't exist here. Do the Drs actually SPEAK to the entomologists?! Can they READ? Or are they just so arrogant it blinds them to the facts? I told my stepmother she should sue these Drs, or at the very least let them know that they dropped the ball, but to her credit she's focused on getting better and being positive. But I don't think this insanity will stop until there is accountability, unfortunately, and maybe the buck needs to stop to protect the next poor patient/victim of these jokers! I read the synopsis of the movie and just that opened my eyes to the battle that's been going on over this. Definitely need much more publicity, so that those who have not been touched by this disease will have some awareness just in case.

Post Edited By Moderator (Traveler) : 3/14/2015 6:53:37 PM (GMT-6)

I think it is wonderful that you are advocating for her and helping!

I agree a local support group sounds like a good idea as well as finding a LLMD.

I just recently came across this site listing and highlighting success stories, most of which are well known folks in the lyme community. It has given me a spark of hope :) I hope others can find the same!

http://www.cfsrecoverypath.com/tools/lyme-disease-recovery-stories-oh-yes-its-possible/

I now have what my stepmom is taking. Doxycycline, seftin, and hydroquinone, all oral. Thoughts appreciated.

Incidentally, I was just in Florida and a friend insisted she had a tick on her leg. Two of us looked and saw something that just looked like a very tiny scab. Embarrassingly, we assured her it was not a tick. She insisted, and it was removed and examined with a magnifying glass. Only then could we see that it was indeed a teeny tiny tick! This was the day after we had been on a nature trail. It is AMAZING that she found this tick. I knew they were small, but I did not realize how small. 99% of us would never have found this, or if found, recognized this as a tick. Really, I am blown away. This enemy is so very hard to detect.

I'm sorry, but I do not know doses. She is having such an awful time with the antibiotics causing diarrhea that I'm not sure where it will go from here. She is already weak and very thin, (106 lbs at about 5 foot 6) and this is certainly not helping. Now she says she doesn't even feel like eating, though she knows she must. She said today that this is no way to live. Very concerned. She sees the Dr. Friday.

Yes, she is drinking protein shakes. I know she is taking probiotics, but I will make sure she knows how to stagger them with her antibiotics. She loves bananas and avocados, so I'm sure she is using them. My god, I just learned about c-diff recently, and that is very scary that all of this can cause it!

I know she is doing her very best to keep her spirits up and says she WILL beat it.

Thanks for all the info - I will pass it on. I've encouraged her to check this forum out herself, but with almost no use of either hand I'm sure it is very difficult for her.

Thank you thank you thank you. I shared with her that you said this was all temporary, and she said that is very encouraging and that she is trying to stay focused on that.

Oh and if you have a list of LLMDs in Georgia or in the south, that would be GREAT. I'd like to see if her Dr. is on your list, too. She's having such trouble with the antibiotics the nutritionist said to stop taking them immediately, but she has refused, knowing that is her hope to get better. She sees the MD again this Friday.