Is there life after Lyme? And now maybe Lupus?

Hello fellow sufferers, I am not new here but it has been several years since I have been here. Was diagnosed with Lyme in 2009 (tick bite was 2007). In Kansas City I was fortunate enough to have an excellent ID Dr. who specialized in Lyme (MS, CFS, and HIV).

Some of you may be interested to know that he found that 80% of his Lyme patients who were not improving on abx were poisoned with black mold. I had to move out of my home because of the mold in 2013, took the last 6 mo. of abx and believed myself healed about a year later. (moved out of state when my mother died to be with my father)

Last year I was either re-infected, relapsed, or came down with something else. I will spare you the gory details except to say I can't take this much longer. I am helping to take care of my father here, but there are far too many days it is all I can do to drag myself out of bed, do the minimum, and go back to bed.

My GP ran some tests on me and I had a positive ANA. So I was sent to a Rheumatologist to see about RA or Lupus. I had a high Double Strand DNA IgG Titer, but the Rheumy did not want to dx Lupus because I do not have all of the symptoms -- or enough of them.

From being on here years ago, I remember lots of people talking about Lupus on here. I understand it can imitate many diseases, including Lyme. I am petrified that Lyme may have cause Lupus, but there is no one here knowledgeable of such things. No one here will even test for Lyme.

I am reading info on the Lupus forum, but really want to find out if anyone here is knowledgeable of such things? If I have a test that indicates Lupus doesn't that mean I have it? Why would I test positive if I don't have it. And yes, woe is me, I neglected to ask the Dr all the questions I needed to ask as I allowed him to be in a hurry.

Thanks for any help!

i recently see a lot of discussion thread names that are a bit pessimistic, like "is there life after lyme". guys, the disease is treatable with antibiotics and herbs, it's not curable yet but YOU CAN GET BETTER.

it's not a death sentence, especially that you know about it you have the opportunity to keep it in check, and you can. you may have to change a few LLMDs and get a better one.

also treatment options are getting better each year, a few yrs ago if u said u are being treated with dapsone they will think u are nuts, now there are hundreds of people treated by it that get better, among the worst cases....

and things will get better still, persisters were just a fringe 3 yrs ago, something we suspected but the scientific evidence was not that solid, now there is and everybody is testing everything on them, they have a model of producing persisters out of lyme and then they throw on them antibiotics, herbs, essential oils, sweeteners what ever...

take your pills, get to a point where your illness is more or less stable and not progressing, and hang in there. much more potent drugs will become mainstream soon.

have some faith please.

I do appreciate your optimism, mpost. However, as I stated, there are no LLMDs in my area and I cannot even get a test for it. Therefore there are no abx to take. I believed I was cured and then voila. That is the reason the question was asked. You said it yourself -- it is not curable.

Thank you Nic. As I can't get a test w/o a Dr's order, I will by necessity work on my immune system. That's why I posted questions about Lupus.

+Lyme said...
Does anyone here believe, or have an opinion that Lyme can cause Lupus?

www.healingwell.com/community/default.aspx?f=30&m=2233793
www.healingwell.com/community/default.aspx?f=30&m=3652257
www.healingwell.com/community/default.aspx?f=29&m=2396677
www.healingwell.com/community/default.aspx?f=30&m=2396672

hope this is enough info for you

+Lyme said...
Does anyone here believe, or have an opinion that Lyme can cause Lupus?

Yes - did you see my post?

u should watch this, she talks about ANA and other autoimmune markers, she says they will go down with/after treatment

/www.youtube.com/watch?v=5Jr_iCUJJpQ

Hey, +Lyme... Are you still in AVL?

bluelyme said...
don not take immunosuppressive meds ...please

if only they would work, i would take loads of them... but tens of bn $ and lots of weird biologic "...zumab" names later... they still perform worse than .... ALA. Yes ALA, the lipoic acid...

www.medicalnewstoday.com/articles/318225.php

"
Compared with participants who took the placebo, the researchers found that those who took lipoic acid showed a 68 percent reduction in the rate of whole brain atrophy.

For comparative purposes, the team notes that the drug ocrelizumab (brand name Ocrevus) - which was recently approved by the Food and Drug Administration (FDA) for the treatment of primary progressive MS - improved whole brain atrophy by 18 percent in clinical trials."

so ALA, a medication that will cost $200 a year, is more effective than ocrelizumab, a medication that costs $65000 a year.... Well done big pharma !

Yes, DON'T TAKE immunosupressors if u know u have an infection, it will make things many times worse. I was stupid enough to take steroids for a "persistent astma" and that's what drove me almost incapacitated 3yrs ago, i had symptoms before but they were mild, after the steroids they spiraled out of control, took me 2.5yrs to recover , and im not over yet....

Hello again, +Lyme:

If you don't mind e-mailing me (click my screen name for my e-mail address), I'd like to share a name or two of some providers in AVL.

Best,
The Dude

+Lyme said...
Thank you, Dude, I will email you. And to all of you above, no, I will NOT take steroids regardless of any dx!

Hi, +Lyme: I just wanted to mention that I responded to your e-mail on August 3rd. Did you receive it? If not, I can re-send. If you did receive it, then no worries. Take care.