Scleroderma and Lyme

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

LilaJ
Regular Member


Date Joined Nov 2017
Total Posts : 84
   Posted 12/5/2017 4:28 AM (GMT -6)   
Hi
Anyone else dealing with autoimmunity and Lyme/ Bartonella?
Before the Bart kicked in l was seronegative tho lots of autoimmunity symptoms
It's now all sore up horribly
Does Lyme cause you to lose muscle tone/ flesh of hands and feet to melt away,also l see the freezing feet is common!
Anyone using antibiotic protocol for both conditions?
They're driving me nuts!
Thanks for any treatment tips

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32609
   Posted 12/5/2017 12:27 PM (GMT -6)   
I don't have any autoimmune markers showing up in blood work...but it does happen with lyme.

People report positive ANA.

Yes Lyme and co can cause loss of flesh and muscle atrophy. It did with me.

I am using antibiotics. I'm not losing anymore flesh/muscle. My muscle has improved quite a bit, but I still have the atrophy on my hands and feet.

You could try a collagen supplement, see if that helps.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

LilaJ
Regular Member


Date Joined Nov 2017
Total Posts : 84
   Posted 12/5/2017 12:36 PM (GMT -6)   
Thanks ,it feels less lonely to know it goes with the territory!
I know people address autoimmunity with an antibiotic protocol so l guess it could help for both ( have great hopes for Doxycycline...)

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32609
   Posted 12/5/2017 1:06 PM (GMT -6)   
LilaJ said...
Thanks ,it feels less lonely to know it goes with the territory!
I know people address autoimmunity with an antibiotic protocol so l guess it could help for both ( have great hopes for Doxycycline...)


Doxycycline alone won't be enough for lyme and co's.

You should be on two antibiotics at the same time.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

LilaJ
Regular Member


Date Joined Nov 2017
Total Posts : 84
   Posted 12/5/2017 9:58 PM (GMT -6)   
Thanks,I've just looked in detail at your treatment schedule above and now see that. Do you then continue to take two long term?or are you hoping to stop them after a period of time

Also, I have symptoms of Bartonella- is that treated similarly,and do alot of people have both/ co infections?
And do you take probiotics continuosly too?
I'm getting the picture now...and it's complex!
I'm very grateful for all the advice, thanks.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32609
   Posted 12/5/2017 10:14 PM (GMT -6)   
Yes, I do two or three antibiotics at the same time.
I am currently on a pulsed protocol. So I don't take the abx every day.

I do plan on stopping the abx once I am symptom free.
A lot of my symptoms have resolved , but have some stubborn symptoms (7 or 8?) left that I'm working on now.

Bartonella is often treated with Rifampin or Rifabutin plus another antibiotic (or two)

Babesia is often treated with Mepron or Malarone plus one or two antibiotics.

I take probiotics every day - try to take them two times each day.
I have a few different types - two in capsule form plus Kefir and one called Bio-K
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

LilaJ
Regular Member


Date Joined Nov 2017
Total Posts : 84
   Posted 12/5/2017 10:49 PM (GMT -6)   
Hi Girlie
Thanks for confirming that.
It is good to hear your symptoms are resolving now
I've looked at alot of info now and am going to contact my functional medicine doctor too
Thanks for your responses.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32609
   Posted 12/5/2017 11:08 PM (GMT -6)   
Youre welcome.

Keep us posted!
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

LilaJ
Regular Member


Date Joined Nov 2017
Total Posts : 84
   Posted 12/5/2017 11:11 PM (GMT -6)   
Thank you, l will
I'm feeling quite scared at the enormity of this, but very comforted by the support and extensive sharing of ideas and experience here.
Thank you so much.

LilaJ
Regular Member


Date Joined Nov 2017
Total Posts : 84
   Posted 1/7/2018 4:33 AM (GMT -6)   
Seems l have homocysteine issue too so what body out of whack
Do people find Aip diet/ gluten free helps any?
Do people have conventional treatment for eg inflammation,such as steroids too?
Just finding the rapidity of this overwhelming at the mo!
The sclero markers are a pain, as it means autoimmunity too.
I gather some people use the road back ap for this too

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 36310
   Posted 1/7/2018 9:31 AM (GMT -6)   
No, do not use steroids to control your inflammation. Steroids control the inflammation by impairing the immune function, which will allow any infection to go without any control on it - and it often increases symptoms substantially for Lyme patients.

There are quite a few Lyme patients that have high ANA results, but don't actually have scleroderma. This is due to the way Lyme and company affect our immune system and muscles and such. To be completely honest, it's best to treat the infections you have, then see what you are left with, rather than to assume you have everything you test positive for right now. Lyme and company can really mess with all kinds of tests, and with different parts of the body - but most if not all should resolve as you heal.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

LilaJ
Regular Member


Date Joined Nov 2017
Total Posts : 84
   Posted 1/7/2018 9:44 AM (GMT -6)   
Thank you traveller
I also had an antibody show up for scleroderma, so think it's both that and Lyme,but yeah,it only showed up after the bite..
Also the steroid issue sounds complicated, as there is so much inflammation in my system. Thank you for flagging that up.lm pretty certain the rheumatologist will be dead keen to start that,so I'll discuss the impact on Lyme with her.
Very grateful to you all for sharing your expertise/ experiences 😊thank you.
Ive seen a functional medicine doctor about lots of systems out of whack,

LilaJ
Regular Member


Date Joined Nov 2017
Total Posts : 84
   Posted 1/7/2018 9:46 AM (GMT -6)   
Thank you traveller
I also had an antibody show up for scleroderma, so think it's both that and Lyme,but yeah,it only showed up after the bite..
Also the steroid issue sounds complicated, as there is so much inflammation in my system. Thank you for flagging that up.lm pretty certain the rheumatologist will be dead keen to start that,so I'll discuss the impact on Lyme with her.
Very grateful to you all for sharing your expertise/ experiences 😊thank you.
Ive seen a functional medicine doctor about lots of systems out of whack,

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 36310
   Posted 1/7/2018 9:57 AM (GMT -6)   
If they do suggest corticosteroids, ask them if they have ever read the package insert. LOL. I get the weirdest looks when I do that to a doctor!! But, it says right on the package insert on things like do not use if there is an active infection. While there may be a few instances where steroids can be safely used during an active infection - Lyme is not one of them.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, June 21, 2018 4:23 PM (GMT -6)
There are a total of 2,974,249 posts in 326,161 threads.
View Active Threads


Who's Online
This forum has 161234 registered members. Please welcome our newest member, run_sunshine.
457 Guest(s), 12 Registered Member(s) are currently online.  Details
tarawa, SantaZia, Tim G, John_TX, mattamx, cpaarchie, sandyfeet, Girlie, WifeofPie, Fauntleroy, elvin, duke48