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Celie
Regular Member


Date Joined Oct 2016
Total Posts : 58
   Posted 3/5/2018 4:12 PM (GMT -6)   
One of the doctors on my treatment team believes I no longer have any active infections (except candida, which is a persistent problem), based on blood-work and the symptom picture. (FYI, I've had Bart. for at least half my life, but was asymptomatic until I contracted mycoplasma six years ago). I began treatment in early 2016, starting with multiple abx and anti-virals, and switching to herbals in 2017. I'm free of all symptoms now, except significant fatigue, low-grade inflammation, and stiffness/occasional muscle and joint pain. I have POTS and an MTHFR mutation, so I'm not sure if these are factors (I'm taking the correct MTHFR supplements now). I have not experienced any herxing while on treatment for a long time. This is a whole world away from the years of utter hell I went through before being being diagnosed, and I'm grateful beyond words!!!! I'm now cautiously focusing on avoiding flares and helping my body heal (I think the damage done by the untreated infections is pretty bad, as is the that done by all the abx--they ruined my stomach--but, I believe, saved my life). Can anyone recommend things I can do or take to help support this healing? (BTW, I will continue to be closely monitored for flare/return of symptoms by my team, including my LLMD and LLND). Thanks in advance!

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 2122
   Posted 3/5/2018 5:16 PM (GMT -6)   
Hi Celie,

To repair your gut I would start with Bone broth and eating a diet like Dr Axe suggests for repairing the Gut. I think its steamed vegetables, fermated foods, no gluten etc.

Taking good probiotics should help too.

Take care, Jo

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 3/5/2018 8:01 PM (GMT -6)   
Celie said...
One of the doctors on my treatment team believes I no longer have any active infections (except candida, which is a persistent problem), based on blood-work and the symptom picture. (FYI, I've had Bart. for at least half my life, but was asymptomatic until I contracted mycoplasma six years ago). I began treatment in early 2016, starting with multiple abx and anti-virals, and switching to herbals in 2017. I'm free of all symptoms now, except significant fatigue, low-grade inflammation, and stiffness/occasional muscle and joint pain. I have POTS and an MTHFR mutation, so I'm not sure if these are factors (I'm taking the correct MTHFR supplements now). I have not experienced any herxing while on treatment for a long time. This is a whole world away from the years of utter hell I went through before being being diagnosed, and I'm grateful beyond words!!!! I'm now cautiously focusing on avoiding flares and helping my body heal (I think the damage done by the untreated infections is pretty bad, as is the that done by all the abx--they ruined my stomach--but, I believe, saved my life). Can anyone recommend things I can do or take to help support this healing? (BTW, I will continue to be closely monitored for flare/return of symptoms by my team, including my LLMD and LLND). Thanks in advance!


Celie - keep an eye on your 'symptoms' - significant fatigue, inflammation, stiffness/occasional muscle and joint pain/POTS.
That seems like a lot left over to not think it's active infection.

That's good that you're team will be closely monitoring this.

Did you treat all three B's? The reason I'm asking is the POTS could be Bart or Babs if you haven't treated those two.
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

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1682
   Posted 3/5/2018 8:20 PM (GMT -6)   
Celie,

First of all, I'm so glad you are now a world away from the suffering you were previously in. That is wonderful news!

Significant fatigue
Low-grade inflammation
Stiffness/occasional muscle and joint pain
POTS

These remaining symptoms are a strong indication that you still have infections and should consider continuing treatment with maybe herbs if it's time to come off the antibiotics. All of the symptoms you have remaining can be caused by Bartonella, including POTS. I have seen POTS listed as a babesia symptom, but this article from Galaxy Diagnostics regarding a veterinarian who had bartonella from a cat bite (not Lyme disease/co) leaves no doubt in my mind that bartonella can cause POTS (galaxydx.com/web/pdfs/Bartonella_Lauren.pdf. Of course, mycoplasma can cause most of those symptoms, as well (not sure about the POTS). Did the doctor do IGG/IGM mycoplasma tests recently that indicated the mycoplasma has been successfully treated?

I have a hard time believing in the idea of remaining symptoms being due to leftover damage and not ongoing infections. That is my personal belief, but I know there are others who believe differently. I just do not like for people to go on their way and not consider they may still need more treatment and can eliminate their remaining symptoms.

I would recommend doing a modified Buhner's protocol with at least Japanese knotweed, danshen/skullcap combo, houttynia or IHA formula and/or sida acuta for bartonella and something for fatigue - eleuthero or rhodiola or something else. If you're considering herbs, I would highly recommend getting Buhner's books so you have access to everything you need both now and in the future.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 3/5/2018 8:24 PM (GMT -6)   
WalkingbyFaith - looks like we're thinking the same - re: active infection.
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

Celie
Regular Member


Date Joined Oct 2016
Total Posts : 58
   Posted 3/6/2018 7:42 AM (GMT -6)   
Thank you all very much for your replies. I’m definitely working on gut repair, as the abx did quite a bit of damage (I have bad leaky gut and candida, which is at least part of what is causing the persistent inflammation).

Girlie, yes I’ve been treated for Bart, myco, lyme, and babesia, both with abx and herbs. My team is thorough smile The POTS pre-dates my infections—I’ve had symptoms my whole life (I just didn’t know why I fainted a lot growing up!)!

WalkingbyFaith, I’m going to discuss re-testing for Bart and myco in my next doctors visit next week. To be honest, I’m not sure what tests have been done recently, because I’ve had a slew of blood work taken by different specialists and have not reviewed all the results with my team yet. I have Buhner’s books and most of the herbs you suggest (thank you), and will speak to my LLND about a plan during my next appointment. I definitely will be avoiding abx at all costs, as my stomach simply can’t cope and I don’t believe I need them right now.

I have a question based on the feedback re. the idea that if symptoms remain, it indicates there’s still active infection: if someone has had these infections for a long period, with significant damage, it’s surely inevitable that someone will have health impacts for a period after an infection is totally cleared, because the body takes time to repair, wouldn’t it? I appreciate that if symptoms are persistent and don’t resolve, it’s likely something is going on—but isn’t it best to have a window to see if these resolve before exposing the body to more treatments? There’s surely no way your body could just feel 100% immediately—wouldn’t it take a long time to heal (which would cause impacts)? I feel a tension between wanting to ensure the infections are under control and acknowledging that my body is totally SPENT after being so sick for so long, then undergoing the extreme rigours of intense, ongoing abx treatment.... I’m especially cautious about taking anything since learning of the MTHFR mutation and the detox / med sensitivity problems it causes.

Thank you all for your replies, advice, and support. You are wonderful!! smile!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 3/6/2018 12:08 PM (GMT -6)   
Celie said...


Girlie, yes I’ve been treated for Bart, myco, lyme, and babesia, both with abx and herbs. My team is thorough smile The POTS pre-dates my infections—I’ve had symptoms my whole life (I just didn’t know why I fainted a lot growing up!)!



Since you've had these infections for a long time - it's possible that POTS was part of the package...and maybe was indeed your first symptom?
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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 3/6/2018 12:10 PM (GMT -6)   
Celie said...


WalkingbyFaith, I’m going to discuss re-testing for Bart and myco in my next doctors visit next week. To be honest, I’m not sure what tests have been done recently, because I’ve had a slew of blood work taken by different specialists and have not reviewed all the results with my team yet. I have Buhner’s books and most of the herbs you suggest (thank you), and will speak to my LLND about a plan during my next appointment. I definitely will be avoiding abx at all costs, as my stomach simply can’t cope and I don’t believe I need them right now.




You know that re-testing may not give you any answers...that's why most LLMD's don't do retests. Having positive antibodies - doesn't mean you still have the infection...as those antibodies can remain for years.
And as you know negative doesn't mean you don't have it...
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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 3/6/2018 12:18 PM (GMT -6)   
Celie said...
T

I have a question based on the feedback re. the idea that if symptoms remain, it indicates there’s still active infection: if someone has had these infections for a long period, with significant damage, it’s surely inevitable that someone will have health impacts for a period after an infection is totally cleared, because the body takes time to repair, wouldn’t it? I appreciate that if symptoms are persistent and don’t resolve, it’s likely something is going on—but isn’t it best to have a window to see if these resolve before exposing the body to more treatments? There’s surely no way your body could just feel 100% immediately—wouldn’t it take a long time to heal (which would cause impacts)? I feel a tension between wanting to ensure the infections are under control and acknowledging that my body is totally SPENT after being so sick for so long, then undergoing the extreme rigours of intense, ongoing abx treatment.... I’m especially cautious about taking anything since learning of the MTHFR mutation and the detox / med sensitivity problems it causes.

Thank you all for your replies, advice, and support. You are wonderful!! smile!


Not inevitable...but could...yes. But "significant fatigue, low-grade inflammation, and stiffness/occasional muscle and joint pain. I have POTS " is several symptoms - that would be too many for me to call it quits.
You could just go on herbals if you're not sure.

Have you thought about pulsing the abx...and that way you could slowly wean off them...it would be easier on your body...but you would certainly have some coverage ...maybe do that for several months to allow your immune system to kick in. Maybe a M/W/F approach - for a couple weeks per month.
Or..switch to herbals.
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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 3/6/2018 12:20 PM (GMT -6)   
I have leftover symptoms after 3 years treating...less than 10 symptoms now...but could a few of them be damage?

perhaps...but they wax and wane - which leads me to believe they are not damage.
I choose to continue to treat...and if is damage...and needs time to heal - it will happen on or off 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

Post Edited (Girlie) : 3/6/2018 11:25:33 AM (GMT-7)


WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1682
   Posted 3/6/2018 2:13 PM (GMT -6)   
Girlie said...
Celie said...


Girlie, yes I’ve been treated for Bart, myco, lyme, and babesia, both with abx and herbs. My team is thorough smile The POTS pre-dates my infections—I’ve had symptoms my whole life (I just didn’t know why I fainted a lot growing up!)!



Since you've had these infections for a long time - it's possible that POTS was part of the package...and maybe was indeed your first symptom?


I was thinking the same thing. If you had POTS before Lyme, then what caused the POTS? Could be you've had Lyme longer than you thought.

Once I got a positive test for Lyme and ehrlichia and starting reading and researching and learned about bartonella and babesia, I discovered I'd had symptoms since childhood, but they were relatively mild and seemingly unrelated and the idea of Lyme never came into play until decades later when my body suddenly went nuts with all kinds of wild, bizarre symptoms.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1682
   Posted 3/6/2018 2:23 PM (GMT -6)   
Celie said...
I have a question based on the feedback re. the idea that if symptoms remain, it indicates there’s still active infection: if someone has had these infections for a long period, with significant damage, it’s surely inevitable that someone will have health impacts for a period after an infection is totally cleared, because the body takes time to repair, wouldn’t it? I appreciate that if symptoms are persistent and don’t resolve, it’s likely something is going on—but isn’t it best to have a window to see if these resolve before exposing the body to more treatments? There’s surely no way your body could just feel 100% immediately—wouldn’t it take a long time to heal (which would cause impacts)? I feel a tension between wanting to ensure the infections are under control and acknowledging that my body is totally SPENT after being so sick for so long, then undergoing the extreme rigours of intense, ongoing abx treatment.... I’m especially cautious about taking anything since learning of the MTHFR mutation and the detox / med sensitivity problems it causes.


From my understanding, damage to nerves and the brain can take a long time (months to years) to heal, but even healing those is still possible. IMO, the symptoms you have remaining do not indicate irreversible damage.

I totally understand the tension you feel and the wear and tear on your body. It would be good if you could discuss your concerns with your medical team and see if they would support you switching to herbal treatment and working on supporting your immune and detoxification systems.

P.S. - The guys keep talking about d-limonene, and I'm going to try it. Should help with detoxing the liver. Since you have detox/sensitivity issues like me, I thought I'd mention it. Jarrow brand is the one astroman recommended, if you're interested.

--------------------------------
Edited to add one more thing:

There’s surely no way your body could just feel 100% immediately.

I don't know about that. A while back someone posted about one of the Lyme doctors who had a couple of patients who accidently overdosed on their antibiotics and were essentially "cured." Sounded like they had horrible herxes and then felt completely normal afterward. I'd have to go back and read it again, but that's the impression I'm remembering of it.

Wish I could accidentally OD on something that would cure me! I can't bring myself to take high enough doses of my herbs to do anything for fear of death by herxheimer (LOL).

Post Edited (WalkingbyFaith) : 3/6/2018 1:28:34 PM (GMT-7)


Celie
Regular Member


Date Joined Oct 2016
Total Posts : 58
   Posted 3/9/2018 1:18 PM (GMT -6)   
Thank you (again) for your very helpful replies! I met with my LLMD this week, and the current thinking is that my symptoms are due to serious candida overgrowth. I hadn't realised it was as bad as it is (it's throughout my body-visibly so--and it was apparently seen and thought to be quite bad during a recent scope). I've been put on a three month treatment plan of diflucan, nystatin, grapefruit see extract and garlic. I'm definitely getting some die-off (mild brain fog and headache, and a new plethora of floaters), but it's nothing like the herxes I've survived.

The only concern I have is chest discomfort. I have QT prolongation, so I'm not if this could be a factor or if chest discomfort (and occasional mild pain) are part of treating candida. Has anyone had this experience?
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