Thank you everyone! (A few follow up questions as well)

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c009j
Regular Member


Date Joined Aug 2017
Total Posts : 74
   Posted 5/4/2018 10:44 AM (GMT -6)   
First I'd like to thank everyone here for your advice over the past year! I am probably at about 40% recovered and for the past month have been able to fairly comfortably shower again after over a year of taking only baths due to fear of falling.

I've neglected to post my progress until now due to fear of "jynxing it" but a brief summary is my main symptoms are balance problems, no formal Lyme diagnosis but a positive KD41 band on my western blot (negative syphilis tests 3 or 4 times since symptoms started a year and a half ago). Since I live in Taiwan I don't have access to any LLMDs and have been self treating since the western blot in March. I've been taking 200mg doxycycline BID. Improvement started about 2 weeks into that dosage and I'm now at the point where I've even been easing my way back into going to the gym. With the response I've had I feel 90% certain that I have been dealing with Lyme all along at this point. I am still a bit nervous this is just a fluke, but I'm going to continue taking doxy for now. Again thanks everyone for your tips and advice, I'm still not where I want to be , but finally have hope again!

Onto a few questions, my first is how do those of you who have taken doxy deal with photosensitivity? I noticed about a month in that I'm getting red in the face extremely easily. Today was overcast and I was out in the shade for just an hour and I look like Rudolf and my face is burning and sensitive. This has happened a few times.

Also other members of this forum had recommended I add more than doxy to my regimine since doxy is only bacteriostatic. I am a bit nervous about developing antibiotic resistance though as I'm already allergic to penicillin(surprisingly I've taken amoxicillin in the past with no problems). I don't want to come down with something serious and have antibiotics fail on me however, I feel like my improvement has become a bit stagnant the passed few weeks, I've remained about the same recently but when I first started the higher dosage of doxy I had noticeable improvement every few days.Any suggestions ?

And once again thank you to everyone on here for your support !

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33873
   Posted 5/4/2018 11:11 AM (GMT -6)   
Re: Doxy and sun. you can put on sunscreen...but it will need to be a high number.

I had to go off it once summer hit....even with the sunscreen it was very difficult to not get sun burned.

You could start pulsing a cyst buster - Tinidazole or Flagyl. I am taking it two days a month only.

Another antibiotic you could add to the doxy is azithromycin.


Or, you could change the doxy to minocycline (less photosensitivity) and then down the road add azithromycin or biaxin to it.

Is it suspected that you have bartonella? If so, you could add Rifampin in to your regimen - either with minocycline or your doxy. (if you stay on it)

You may also want to consider biofilm busting. I am taking Xylitol and lactoferrin for one week a month.
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 : 33873
   Posted 5/5/2018 3:41 PM (GMT -6)   
bump
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

Dahlias
Veteran Member


Date Joined Jun 2017
Total Posts : 518
   Posted 5/6/2018 3:04 AM (GMT -6)   
I am allergic to penicillin and worry about becoming allergic to more antibiotics too. Taking more than one at once is supposed to help prevent that. Doxy alone really isn't enough.
"This too shall pass. It might pass like a kidney stone, but it will pass."

Lyme, babesia, mycoplasma pneumonia. Diagnosed May 2017. Neuro symptoms began September 2017. Treating 11 months so far.

c009j
Regular Member


Date Joined Aug 2017
Total Posts : 74
   Posted 5/7/2018 8:19 AM (GMT -6)   
Thanks for the input. I have no idea about confections. Girlie are you making progress with taking flagyl twice a month ? Only twice per month is a little less intimidating to me than taking a second everyday so I think that would be good to start with.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33873
   Posted 5/7/2018 9:23 AM (GMT -6)   
c009j said...
Thanks for the input. I have no idea about confections. Girlie are you making progress with taking flagyl twice a month ? Only twice per month is a little less intimidating to me than taking a second everyday so I think that would be good to start with.


I don't really know if the flagyl is doing anything. I'm taking it with other antibiotics plus mepron...so not sure.
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
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