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OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 723
   Posted 1/24/2018 2:52 PM (GMT -6)   
Hi friends!

I'm going to be crazy... Now, another new symptom. I have scleritis of the eye... Anyone has this?

joee
Regular Member


Date Joined Dec 2011
Total Posts : 180
   Posted 1/24/2018 3:34 PM (GMT -6)   
Yes!! It was one of my first symptoms. It was awful. Both eyes were bloodshot for about 8 or 9 months. I looked stoned all the time. I didn't know I had lyme at the time. No one could figure out what was wrong with my eyes. Finally, my eye dr said it was scleritis. He said I had some kind of autoimmune problem but he didn't know what one. He gave me steroid drops. fixed the redness. Looking back, I'm not sure if the eye steroid drops was a bad thing for the lyme that I had though.

What is the treatment they are doing?

I would assume this is from lyme right??

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 723
   Posted 1/24/2018 3:44 PM (GMT -6)   
I would like to think and assume that it is from the lyme, but honestly I am already doubting everything.

Everything unusual is happening to me ... and everything is now appearing with the treatment? These are things that I do not understand ... and if I use logic, I should stop the treatment because everything "serious" is now appearing ...

Whatever it is, that is producing all these symptoms, it is really terrified and unjust ...

I have been tempted many times to use steroids

I'm tired of everything already, honestly. I have lost faith in all doctors, including my llmd.

I've been thinking about doing a SPET CT, and leave doubts ... Here maybe they can see how my body is responding to what is "****ing" me

joee
Regular Member


Date Joined Dec 2011
Total Posts : 180
   Posted 1/24/2018 4:43 PM (GMT -6)   
OriolCarol,

This disease is really frightening with the new and worsening symptoms. But rest assured, this is normal. As normal as lyme can be. Maybe not normal, but expected?

I go through the same treatment fatigue. All the time. Do you have someone who can remind you when this happens that it will get better? To trust the process? If not, please come here to this forum. I can't tell you how many times they help me keep my head up and soldier on.

Don't give in to the steroids, unless it is really medically necessary. I think of it like this. I have named my lyme, bart, and babs and I have given them personalities. They are gary, barry and ed. I don't like them. My husband and I joke about them and curse them. When things get bad I say, "Fork you, Barry!!", or "Fork you Ed!!" No way I will lose this battle by me taking steroids or giving up. Nope. It is on. I'm in it to win it.

This disease messes with your thought process and wants you to doubt your ability to get well. Don't let it win.

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 394
   Posted 1/24/2018 4:59 PM (GMT -6)   
Carol I'm not exactly sure what scleritis is, but my eyes were bloodshot like a stoners for the 2+ years before I started treatment. My eyes have been getting better and better.

I have seen a few threads pop up here about bloodshot eyes. Not sure if that is the same, but Joe's comments refer to that.


You have only been on treatment a few weeks right?

Don't give in. Give it more time. You can get better

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 1/24/2018 5:33 PM (GMT -6)   
joee said...
Yes!! It was one of my first symptoms. It was awful. Both eyes were bloodshot for about 8 or 9 months. I looked stoned all the time. I didn't know I had lyme at the time. No one could figure out what was wrong with my eyes. Finally, my eye dr said it was scleritis. He said I had some kind of autoimmune problem but he didn't know what one. He gave me steroid drops. fixed the redness. Looking back, I'm not sure if the eye steroid drops was a bad thing for the lyme that I had though.


Topical steroidal treatment should be fine. And, it will be for a limited time.
It's not the same as high doses people use when taking them for autoimmune diseases.
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

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 723
   Posted 1/25/2018 9:33 AM (GMT -6)   
I try not to lose hope, but I think lyme is winning the battle, both in the psychological and physical ...

Is it possible to have a herx of months? interrunpidamente?

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 1/25/2018 12:39 PM (GMT -6)   
I had this pretty bad for a while myself- fortunately, it rarely happens any more as it's rather disturbing.

Bartonella is the usual culprit of this: www.retinareference.com/diseases/61075940c17078f7/images/e826096f8a/

Bartonella is very hard on the vascular system, and as such, very hard on the eyes for some people.
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/

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 723
   Posted 1/25/2018 2:52 PM (GMT -6)   
Is the treatment I am doing for Bartonella correct? With rifampin 600mg, 100mg of minocycline and 2g of ceftriaxone.

I'm not noticing any improvement sad

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 1/25/2018 2:59 PM (GMT -6)   
Calling Girlie!! LOL! I'm so sorry, but I really don't know enough about pharma treatment to be able to comment on your treatments. I'll message Girlie though, and maybe others that are doing pharma treatments will join in soon as well.
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/

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 1/25/2018 3:09 PM (GMT -6)   
OriolCarol said...
Is the treatment I am doing for Bartonella correct? With rifampin 600mg, 100mg of minocycline and 2g of ceftriaxone.

I'm not noticing any improvement sad


Carol - can you remind me (and others reading this thread) how long you've been on the bartonella treatment?


I can't comment on the Ceftriaxone IV (Rocephin) - as i'm not knowledgeable about IV abx.

But for others who will be reading this thread - how often are you infusing the 2g of rocephin?

Rifampin 600 mg once daily or 300 twice daily is the usual dose.
Minocycline is usually 100 mg TWICE daily...but since you're also doing the rocephine...the 100 mg once daily may be appropriate.
I'm sorry I can't be more definitive on this - I'm just not sure when there are IV abx.
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

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 1/25/2018 5:19 PM (GMT -6)   
I was just looking at some of the news sites that I get articles from, and this article was on there today -
/www.hindawi.com/journals/joph/2017/9247465/

"Seroprevalence against Rickettsia and Borrelia Species in Patients with Uveitis: A Prospective Survey"

A few of the comments:
"Vector-borne diseases such as Lyme borreliosis and rickettsioses have been associated with ocular inflammation."

"Rickettsioses are systemic infections with symptoms caused by vasculitis due to the bacterial marked tropism for the endothelial cells of small vessels. The Gram-negative Rickettsia bacteria are arthropod vector-borne and worldwide distributed. Ocular manifestations such as scotoma, floaters, redness, or decreased vision are reported in Rickettsia infections but are usually self-limited and may easily be overlooked. Of the spotted fever Rickettsia (SFR), Rickettsia conorii and R. rickettsii have been reported as the cause of mainly posterior uveitis, with a chorioretinal involvement."

So, my question is, have you been evaluated for RMSF as well?
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/

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 1/25/2018 5:23 PM (GMT -6)   
OriolCarol said...
I try not to lose hope, but I think lyme is winning the battle, both in the psychological and physical ...

Is it possible to have a herx of months? interrunpidamente?


I keep forgetting to respond to this! Ugh, sorry.
Yes, it is possible to herx for very extended periods of time. I herxed for 12 months continuously, with it getting worse every month. This is harmful to the body though, so if you are 'stuck' in a herx, then your first order of business needs to get the herx to stop. Then you can slowly reintroduce treatments - if they needed to be stopped completely to get the herxing under control.

Most of the time though, we can gain control of a herx by lowering our doses and increasing our detoxing, using binders and other means of detoxing.

If you believe you are stuck in a herx, please let us and/or your doctor know so you can get some help in getting it to stop.
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/

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 723
   Posted 1/25/2018 6:19 PM (GMT -6)   
I think I'm stuck in a herx with severe neurological symptoms ...

My worst symptoms, potentiated with the antibiotic are tinnitus, vertigo and fasciculations, also the joint pain and the burning sensation.

Girlie, I've been on Bartonella treatment for three weeks sad

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 723
   Posted 1/25/2018 6:30 PM (GMT -6)   
Another thing that I would like to comment on.

Traveler, in the link that you have passed me of the scleritis by Bartonella, the woman had a title of igg of 1/1280 high!
I have looked at the igg of bartonella henselae and quintana and I only have 1: 128 that is negative? It's a very low title, is not it?

Loutucky
Regular Member


Date Joined Nov 2014
Total Posts : 434
   Posted 1/26/2018 7:33 AM (GMT -6)   
I have had uveitis in the past and my lyme doctor says it could be from lyme or bartonella. I have taken steroid eye drops in the past and tapered off of them to control the inflammation. Even when I don't have uveitis, I have a lot of eye pain, eye pressure and light sensitivity.

I do not like taking the steroids but my LLMD told me that very little goes systemic in eye drops and that I should not risk permanent eye damage.

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 1/27/2018 12:23 PM (GMT -6)   
OriolCarol said...
Another thing that I would like to comment on.

Traveler, in the link that you have passed me of the scleritis by Bartonella, the woman had a title of igg of 1/1280 high!
I have looked at the igg of bartonella henselae and quintana and I only have 1: 128 that is negative? It's a very low title, is not it?


Sorry, I had a very busy (and painful eyes) couple of days.

A "normal" result for acute Bartonellosis (IgM)is 1:128, so you are correct in that your result is low by most standards.

An IgG titer of greater than 1:256 is considered evidence of current or past Bartonella infection. Titers of 1:64 to 1:128 are considered equivocal.

But, no matter what your tests say, your symptoms ( tinnitus, vertigo and fasciculations, also the joint pain and the burning sensation) definitely suggest that you do. In this case, I would say a treatment trial is needed to know if you have the infection or if it's just severe Neuro Lyme. Usually though, those people that have a lot of neuro pain have both Neuro Lyme and Bartonella.

I would suggest that you increase your detoxing first - then talk to your doc about lowering your doses if that doesn't help. It would just be until you can get 'ahead' of the herx.


Loutucky
That's my understanding as well. There comes a point in time where some must make that decision to use steroids, and hopefully it's only in a 'localized' situation as you had.
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/

Loutucky
Regular Member


Date Joined Nov 2014
Total Posts : 434
   Posted 1/27/2018 1:50 PM (GMT -6)   
Thanks Traveler! I hope you are feeling better now.

Traveler
Elite Member


Date Joined May 2007
Total Posts : 36310
   Posted 1/27/2018 2:51 PM (GMT -6)   
Loutucky said...
Thanks Traveler! I hope you are feeling better now.


Thanks! I"m getting there! LOL! Changing out faucets in hard to get places needs to be left for the younger crowd, I think though! LOL!
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/
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