My Lyme Story, plus: Switching from Doxy to Amox?

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Solaris719
Regular Member


Date Joined Dec 2017
Total Posts : 145
   Posted 12/9/2017 5:40 PM (GMT -6)   
Hello all,

I've been reading the forums for a while and have gotten some excellent advice and finally decided to register as I am in need of the hive mind's assistance.

Here is a timeline of my Lyme Story and symptoms for background info, which you can read or you can just scroll to the bottom to main question/purpose of this post.

9/26/17: While at a client's house, I felt completely normal, and then in the span of 5 seconds I felt like I was about to faint, start to stutter and shake, had severe anxiety, and end up with a panic attack (I did not recognize it as such at the time). I tried to drive myself home but felt like I was going to faint at the wheel, pulled over into a parking lot, and was taken to the hospital by my wife. They ran bloodwork (all normal, I actually requested a lyme test at the time but they said I'd be better off going to PCP for that) and had CT scans of the brain to rule out the usual suspects like a stroke/TIA, brain tumors etc. I was kept over night and discharged home and told to see a neurologist. For several weeks prior I had dull headaches on and off that weren't relieved by ibuprofen like I would expect, but I didn't think much of it. I also had strong neck muscular pain and spasm for about 2-3 months prior to this as well, but I had written it off as related to my back, as I have a history of severe scoliosis of my thoracic spine with 2 fusions as a kid. I just figured it was all related to that. I have no recollection of ever being bitten by a tick or having EM.

9/27/17 - 10/3/17: I see neurologist and have every test under the sun ordered, MRI with contrast of head and neck, EEG, Echocardiogram, EKG, etc. All normal. My lyme symptoms (still undiagnosed at the time) then became constant and were mostly all psych, severe anxiety (I have a hx of anxiety and have been taking Klonpin for years and had just weaned down to only taking it PRN 1 month prior to this), mood swings, depression, headaches, and fatigue. My neurologist orders bloodwork and at my request they add the basic Lyme test. Neurologist prescribes an SSRI (Zoloft) which I take for 1 day and quit as it made my depression symptoms worse, and I felt it was the wrong course of action as 1-2 weeks prior I was not a depressed person. I see a psychiatrist who ups my dose of Klonapin from .5mg 1/2 pill twice a day to 3 times per day which helps. The anxiety is so bad that I had become agoraphobic. I was able to see a few clients a day (I am a home care physical therapist) but I resorted to having my wife drive me to clients after she got out of work at my lowest point). At this point, I am afraid I am becoming a psych patient. I develop terrible insomnia, brain fog, and spend most of my time at night researching what could be wrong with me

10/4/17: I log on to check the results of my blood work, all normal except an "equivocal" result for Lyme IgM, and that the sample has been sent for Western Blot for confirmation. I realize at this time that it must be Lyme, and start myself on 100mg of doxy 2x/day (my brother has a running prescription for acne). I have some familiarity with Lyme as my best friend has been battling Lyme/Babesia for about a year and immediately call his LLMD and get an appointment for 10/13. Several days later the Western Blot comes back positive for Lyme IgM (23 and 41), negative for IgG (4 positive bands 39, 41, 45, 66). My neurologist calls and says it looks like I have Lyme and asks if I have any symptoms and that they aren't sure if they want to do anything else because I don't have the typical joint pain. I realize that they have no clue what to do with lyme, politely ask for the copy of the Western Blot to take to the LLMD, and have never talked to them again. I thank God that I advocated for myself and had some experience via my friend and my occupation, otherwise I may have ended up in a psych ward.

10/5/17-10/13/17: I am on the doxy and have some pretty rough herxes even at that dose (though I have some familiarity with Lyme, I was not familiar with herxing), people tell me I look very sickly (appetite had been poor for the previous few weeks) and I almost pass out from anxiety/herxing through my sister's wedding on Columbus day, but by the day I see the LLMD on the 13th I can notice that I am slightly better.

10/13/17: I see LLMD, he explains a lot to me, and prescribes me with the cocktail: Doxy 200mg 2x/day, Azithromyicin 500mg 1x/day, and Tindamax 500mg 2x/day 3 days on/4 off, plus the supplements: Magnesium, L-theanine, B12, and a probiotic (Culturelle 10billion from CVS). He tells me to come back in 8 weeks.

10/14/17-12/3/17: I start the cocktail, have a rough time with the doxy with my gut, chronic diarrhea, but am determined to fight through it. The 2nd weekend on Tindamax I have the worst herx of my life with extreme anxiety that left me in bed all weekend. After that, my symptoms continue to improve, and other than the recurring diarrhea, I start to feel like myself again. At about the 5-6 week mark I can identify no symptoms and begin to think I've beaten this thing. I had my PCP write me a script for the Western Blot on 11/11 and I went from 6 positive bands to only 3 (IgM 23, IgG 41, IgG 66). Around the last 2 weeks I begin to wonder if I can stop the antibiotics as my only symptoms that I can identify are antibiotic related (diarrhea, oral thrush which my PCP gave me oral Nystatin to treat around week 5) other than the return of some brief dull headaches. I keep on the antibiotics until this past sunday 12/3/17, as I am due to see the LLMD on 12/8. At this point, I had been on doxy for 8 full weeks, 8 weekends of Tindamax, and 7 weeks of Azithromyicin.

12/4/17-12/7/17: I am off all antibiotics but still taking probiotic, L theanine, magnesisum, and finishing the Nystatin. That first Monday day is fine, I notice a few dull headaches and nothing else. Tuesday I can feel an increase in anxiety and still have some headaches with an uptick in fatigue. Wednesday is the same and then I begin to feel a slight return of the depression. Thursday morning 12/7 I wake up feeling everything as if I had started back at the beginning and become very discouraged and I resume taking what's left of my cocktail. The only improvement I had noticed was that my bowel movements had become more normal.

12/8/17: I am already feeling better after resuming the cocktail, I see LLMD, and tell him this story, and as I stress that I felt completely normal other than the gut symptoms until I stopped, he explains to me that it can take a few more months to clear all the Lyme up, but that I am on the right track based on the improvements on the blot and that I had felt symptom free so quickly. He resumes my cocktail but switches the Doxy out for Amoxycillin 850mg 2x/day and reduces the Azithromyicin to 4 days on/3 days off at 500mg 1x/day and wants me tested for C-diff. He tells me to exercise more (prior to onset of symptoms I worked out regularly) to help sweat out toxins and improve circulation. He takes blood work to another Blot test, plus liver function and other items which I am still awaiting results from. He estimates that I am looking at 4-6 months to be cured based on my progress thus far, and will send my bloodwork to Igenx once the last IgM 23 is non-reactive and my symptoms are gone for a few weeks.

Thank you all if you made it through reading that story, and now for the reason I registered on the forums:

The biggest question I have, is if it was a mistake to switch out the Doxy for the Amox since I responded so well the first time around (the reduction of the Azithromyicin I am less concerned about). I did take it for a full 8 weeks, but then again the symptoms returned almost immediately upon stopping, and I was concerned about my gut and that perhaps I was developing a resistance to it (is that possible after 8 weeks?). I have noticed an uptick in brain fog, some irritability, and anxiety thus far but I've only taken 2 doses of the Amox 850mg (well, just popped the 3rd as I typed this). Could this possibly be a herx? Are my symptoms coming back because I went off the doxy and it takes a while for the Amox to kick in? I am beginning to think that maybe I should have just upgraded the quality and dosage of my probiotic (I started a 20bill capsule that requires refrigeration on Thursday at the insistence of my buddy with Lyme who thought the culturelle was worthless) and kept on the previous protocol since it worked so well instead of switching to amox and a lighter overall Antibiotic load. Anyone have thoughts, advice, or experiences? Thanks so much!

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 12/9/2017 6:00 PM (GMT -6)   
First off welcome here. So glad you found us. And we do ask that new members read the first thread called New To Lyme Start Here.

Your whole lyme story sounds so familiar. One of the best advice lessons I learned here was do not stop treatment until you are symptom free for a couple of months. Keep on taking those meds beyond the cessation of symptoms just to make sure you got all the buggers that are hiding.

I also think you have to have a great relationship with your doctor and lots of trust. Especially a doctor that has lyme disease training.

I'm not super good with antibiotic treatment. It made me so sick that I had to change to treating with herbs.

Oh and that's another thing..... there is no perfectly proven treatment. We all are trying different treatments. No one has come up with the magic pill for lyme disease. We all are hoping.

I don't know that testing has ever proven that someone is no longer having lyme. I have been healed for over a year and I would bet (if I weren't such a cheap person) that my blood says I have lyme. For this reason I won't give blood or be an organ donor. I also firmly believe that I could relapse and have full blown lyme symptoms given the perfect storm in my body.

I think some of our members that are antibiotic takers will be along soon and give you better advice. Just remember to have a good open communication with your doctor. So far, he/she sounds like a caring and thorough doc.

PeppermintTea
Regular Member


Date Joined Oct 2014
Total Posts : 266
   Posted 12/9/2017 6:32 PM (GMT -6)   
Solaris - I can't compare doxy to amoxicillin but I can say that I believe Amoxicillin is a working component of my treatment plan.

In regards to other things you mentioned in your post, you mentioned your friend has been treated for lyme/babesia. Is your Lyme doctor considering treating you for coinfections, too? Many lyme doctors treat for the big three (lyme, bartonella, babesia).

When you mention anxiety, panic attacks and wanting to faint at the wheel, that really brings me back to what it was like for me in 2014 when my Babesia was my main symptom. You might want to raise start the babesia conversation with your llmd if you haven't already. Just a thought.

Welcome to the forum and have a great day.

Solaris719
Regular Member


Date Joined Dec 2017
Total Posts : 145
   Posted 12/9/2017 7:11 PM (GMT -6)   
Peppermint - thank you for the advice. When I saw the LLmD on 10/13 he tested me for babesiosis which came back negative, and at this latest appointment on 12/8 he tested for co-infections again (I’ll prob have the results by next Thursday). Are these tests accurate? My buddy tested negative for babesia IgG and IgM but it wasn’t until he had the igenx testing that he was officially diagnosed. He had severe air hunger and night sweats, and a foul odor (his wife had to sleep in a different room) and is still dealing with the air hunger. It would definitely make sense, did you have any other symptoms specific to babesia? I only had night sweats for a day or two at the start of my treatment which I attributed to either anxiety/herxing. I can’t really identify anything else that may indicate babesia at the moment and my symptoms improved with the Lyme cocktail. Are there any other hallmark babesia symptoms? Would Lyme treatments mask the effects of banesia?

Solaris719
Regular Member


Date Joined Dec 2017
Total Posts : 145
   Posted 12/10/2017 6:46 AM (GMT -6)   
UPDATE: I had a Blot test done by my PCP on 12/4 before the LLMD on 12/8, this was my 3rd overall blot test

Blot results from 12/4: igM 23, 39, 41 all reactive (39 is new, 41 was non reactive last test); igG 18 (brand new), igG 39 (was negative last test), igG 41 (no change), igG 66 (no change) are reactive.

Very discouraged as my 11/11 test had only 3 bands positive (igM 23, igG 41, iGG 66). Is this something that normally happens? I woke up with elevated anxiety that im hoping is just related to herxing from the amox which I started Fri night. All thoughts and advice are appreciated.

PeppermintTea
Regular Member


Date Joined Oct 2014
Total Posts : 266
   Posted 12/10/2017 10:42 AM (GMT -6)   
Solaris - I wouldn't get too wrapped up in the testing results. I would go more by symptoms. Back in 2014 my son was having floaters (eyes), extreme anger, joint pain where he had difficulty walking up steps, straie, anxiety and more - he tested negative for lyme, babesia, and bartonella. Not a single band of diddly showed up. Only three years later is he showing anything. A single lyme band.

Testing isn't where is needs to be, yet. There are numerous strains of lyme, babesia, and bartonella. The tests can only detect a few. Again, symptoms need to be considered not just test results.

Elevated anxiety can definitely be part of the herx process. Be sure you are eating clean and detoxing (lemon water, epsom salt baths and more). You might benefit from burbur and pinella which detox the brain. I was recently prescribed this, I purchased the items on Amazon. Ask your doctor before starting.

Yes. I did have other Babesia symptoms. Before treatment it was night sweats and excessive sweating during the day. Once my doctor began treatment with Mepron I was really hit hard. Night sweats (changing sheets 2-3 times a night), difficultly walking any distance without being winded, low-grade night time fevers, and more.

What I have learned is that a patient/person can have many co-infections but one might take the forefront while the others hide (layers of an onion example). When one infections resolves another moves to front stage. Thus why many LLMDS treat for the big three (lyme, babesia and bartonella).

I hope this helps. Do be sure to read through the newbie thread at the top of the forum. Some good stuff in there. Towards the end it speaks a lot to candida and treatment.

Warmly -

Peppermint Tea

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 12/10/2017 12:01 PM (GMT -6)   
Solaris719 said...
UPDATE: I had a Blot test done by my PCP on 12/4 before the LLMD on 12/8, this was my 3rd overall blot test

Blot results from 12/4: igM 23, 39, 41 all reactive (39 is new, 41 was non reactive last test); igG 18 (brand new), igG 39 (was negative last test), igG 41 (no change), igG 66 (no change) are reactive.

Very discouraged as my 11/11 test had only 3 bands positive (igM 23, igG 41, iGG 66). Is this something that normally happens? I woke up with elevated anxiety that im hoping is just related to herxing from the amox which I started Fri night. All thoughts and advice are appreciated.


Hi Solaris. Don't get caught up with the WB testing.

You having more bands reactive doesn't mean you are getting worse. It means your immune system is functioning better - which can be a good thing.
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

Solaris719
Regular Member


Date Joined Dec 2017
Total Posts : 145
   Posted 12/10/2017 12:37 PM (GMT -6)   
Girlie said...
Solaris719 said...
UPDATE: I had a Blot test done by my PCP on 12/4 before the LLMD on 12/8, this was my 3rd overall blot test

Blot results from 12/4: igM 23, 39, 41 all reactive (39 is new, 41 was non reactive last test); igG 18 (brand new), igG 39 (was negative last test), igG 41 (no change), igG 66 (no change) are reactive.

Very discouraged as my 11/11 test had only 3 bands positive (igM 23, igG 41, iGG 66). Is this something that normally happens? I woke up with elevated anxiety that im hoping is just related to herxing from the amox which I started Fri night. All thoughts and advice are appreciated.


Hi Solaris. Don't get caught up with the WB testing.

You having more bands reactive doesn't mean you are getting worse. It means your immune system is functioning better - which can be a good thing.


Thank you! That puts me at ease a bit. I am still concerned now about the potential for co-infection of Babesia that a previous poster mentioned (I tested negative on 10/13 via qwest IFA and was retested on 12/8, awaiting results of that.) Are the IFA tests for babesia reliable or should I ask my LLMD to do Igenix?

Any opinions on the 875mg 2x/day dose for Amox?

Solaris719
Regular Member


Date Joined Dec 2017
Total Posts : 145
   Posted 12/10/2017 12:54 PM (GMT -6)   
PeppermintTea said...
Solaris - I wouldn't get too wrapped up in the testing results. I would go more by symptoms. Back in 2014 my son was having floaters (eyes), extreme anger, joint pain where he had difficulty walking up steps, straie, anxiety and more - he tested negative for lyme, babesia, and bartonella. Not a single band of diddly showed up. Only three years later is he showing anything. A single lyme band.

Testing isn't where is needs to be, yet. There are numerous strains of lyme, babesia, and bartonella. The tests can only detect a few. Again, symptoms need to be considered not just test results.

Elevated anxiety can definitely be part of the herx process. Be sure you are eating clean and detoxing (lemon water, epsom salt baths and more). You might benefit from burbur and pinella which detox the brain. I was recently prescribed this, I purchased the items on Amazon. Ask your doctor before starting.

Yes. I did have other Babesia symptoms. Before treatment it was night sweats and excessive sweating during the day. Once my doctor began treatment with Mepron I was really hit hard. Night sweats (changing sheets 2-3 times a night), difficultly walking any distance without being winded, low-grade night time fevers, and more.

What I have learned is that a patient/person can have many co-infections but one might take the forefront while the others hide (layers of an onion example). When one infections resolves another moves to front stage. Thus why many LLMDS treat for the big three (lyme, babesia and bartonella).

I hope this helps. Do be sure to read through the newbie thread at the top of the forum. Some good stuff in there. Towards the end it speaks a lot to candida and treatment.

Warmly -

Peppermint Tea


Thank you so much for this advice, it is very helpful. I will check it out that newbie thread as well. MY LLmD also did the Qwest Candida testing and I should have those results by the end of the week.

PeppermintTea
Regular Member


Date Joined Oct 2014
Total Posts : 266
   Posted 12/10/2017 3:51 PM (GMT -6)   
Solaris - because you are going the antibiotic route vs the herbal route, I would suggest you reading either of these two documents/book

1) Why Can't I Get Better? Solving the Mystery of Lyme Chronic Disease. By: Richard I. Horowitz MD

or

2) http://www.ilads.org/lyme/B_guidelines_12_17_08.pdf (page 12 out of 37)

Both of these speak to the importance of combination therapy (multiple drugs to attack the varying forms of the lyme spirochete). I believe they are in the process of updating the guidelines in my option 2.

If you purchase the book, the appendix gives examples of treatment scenarios for lyme, babesiosis, candida and many other issues. You might want to show this to your doctor.

For instance an example the book states is " Examples of combining cell wall/cystic and intracellular antibiotics to treat Lyme"

Amoxicillin/probenecid/plaquenil/Zithomax "

I am no expert. I am just passing along what I have read. I know other doctors use other methods.

Warmly -

Peppermint Tea

PeppermintTea
Regular Member


Date Joined Oct 2014
Total Posts : 266
   Posted 12/10/2017 4:23 PM (GMT -6)   
Update Solaris - I am not currently on Amoxicillin, my daughter is for a short period, she will then move onto combination therapy. I am on another "A" drug - Azithromycin. With four of us in treatment it is hard keeping everyone's protocols straight in my head. That is why I have to refer to a chart everyday.

Solaris719
Regular Member


Date Joined Dec 2017
Total Posts : 145
   Posted 12/10/2017 4:46 PM (GMT -6)   
PeppermintTea said...
Update Solaris - I am not currently on Amoxicillin, my daughter is for a short period, she will then move onto combination therapy. I am on another "A" drug - Azithromycin. With four of us in treatment it is hard keeping everyone's protocols straight in my head. That is why I have to refer to a chart everyday.


Thank you, and I hope your family gets well soon!

My LLMD immediately started me on the combination therapy on 10/13: doxycycline 200mg 2x/day (tetracycline class), azithromyicin 500mg daily (Macrolide class), and tindamax 500mg 2x/day 3 days on then 4 days off (azole class, used for cyst busting) plus supplements. I did that for 8 weeks and recovered quite rapidly after the initial herxing, thought I was cured (I had no Lyme symptoms that I could identify the last 2-3 weeks, just side effects from antibiotics), but my symptoms returned within 3 days of stopping. I am back on the same combo but the doxy was switched out for Amoxicillin 850mg 2x/day (penicillin class) as the Doxy can be very very hard on your gut. I had to take it with food after the first week otherwise it would cause upset stomach and occasionally vomiting. The amox is supposed to be easier on your system but I was curious about how effective it is versus doxy and a major reason for my initial post. The combo antibiotic therapy is generally the way to go if you can handle it. I don’t think they recommend doxy for children under 9 years old.

The fact that I went from feeling cured to symptomatic within 3 days of stopping abx makes me wonder if I have undiagnosed babesia like you mentioned earlier. If my bloodwork comes back negative again this week I may ask my LLmD to Do the igenix testing to be sure.

PeppermintTea
Regular Member


Date Joined Oct 2014
Total Posts : 266
   Posted 12/10/2017 4:59 PM (GMT -6)   
Oh! You were on combination therapy smile

I still can't answer your doxy vs amox question but I can speak to they Igenix test.

I tested positive via Lab Corp for Babesia WA-1 back in 2014. In 2016 (after treatment) both Lab Corp and Igenix tested me for Babesia and they both came back negative.

When I went to the JC clinic in DC this November I told them about my clear Babesia test. Next month I will begin their treatment for Babesia .

No one else in my family has tested positive for babesia via Lab Corp. They will also eventually be treated for babesia, too.

Just know. You might pay for the test and it might not even show up. However, if you treat with Mepron, and you have babesia, you will certainly feel it around 2 weeks in.

Hopefully, more weigh in on the doxy vs amoxicillin.

Have a great evening.

WAmrly -

Peppermint Tea

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 12/11/2017 12:41 AM (GMT -6)   
PeppermintTea - Dr J figures you didn't knock Babs out previously - so he's having you treat again?
I know he puts an emphasis on Babesia treatment - did you feel it in your head - when you were on Mepron?

That is where it hit me the most - increase in head pressure behind my eyes.
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

PeppermintTea
Regular Member


Date Joined Oct 2014
Total Posts : 266
   Posted 12/11/2017 5:39 AM (GMT -6)   
Girlie - I believe so in regards to JC.

I absolutely felt it in my head while on Mepron. I remember a few mornings the pain being so intense, in my head, that I couldn't get out of bed. Sometimes a sinus decongestant would help.

I also think "brain zaps" were part of my Mepron phase, too. I would be awoken by a loud zap and shock feeling in my brain. It scared the living day lights out of me. After a time, I just accepted it was part of treatment.

Sorry for hijacking your thread for a moment, Solaris.

Wishing you both a lovely day!

Solaris719
Regular Member


Date Joined Dec 2017
Total Posts : 145
   Posted 12/11/2017 7:16 PM (GMT -6)   
PeppermintTea said...
Girlie - I believe so in regards to JC.

I absolutely felt it in my head while on Mepron. I remember a few mornings the pain being so intense, in my head, that I couldn't get out of bed. Sometimes a sinus decongestant would help.

I also think "brain zaps" were part of my Mepron phase, too. I would be awoken by a loud zap and shock feeling in my brain. It scared the living day lights out of me. After a time, I just accepted it was part of treatment.

Sorry for hijacking your thread for a moment, Solaris.

Wishing you both a lovely day!


That’s okay! What were your babesiosis symptoms? Are there any you consider hallmark babesiosis symptoms? From my research I’ve thought that sweats were a big one (which I don’t have). Trying to see if there’s some way to distinguish between Babs vs Lyme, if that’s even possible

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 12/11/2017 7:55 PM (GMT -6)   
Solaris719 said...
PeppermintTea said...
Girlie - I believe so in regards to JC.

I absolutely felt it in my head while on Mepron. I remember a few mornings the pain being so intense, in my head, that I couldn't get out of bed. Sometimes a sinus decongestant would help.

I also think "brain zaps" were part of my Mepron phase, too. I would be awoken by a loud zap and shock feeling in my brain. It scared the living day lights out of me. After a time, I just accepted it was part of treatment.

Sorry for hijacking your thread for a moment, Solaris.

Wishing you both a lovely day!


That’s okay! What were your babesiosis symptoms? Are there any you consider hallmark babesiosis symptoms? From my research I’ve thought that sweats were a big one (which I don’t have). Trying to see if there’s some way to distinguish between Babs vs Lyme, if that’s even possible


Some hallmark Babesia symptoms: sweats, chills, Autonomic nervous system dysfunction, air hunger....

There is a lot of overlap - very difficult to suss out what is what.

Also, we can have an asymptotic confection ...or one with very low symptoms..and it still needs treatment.
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 : 32622
   Posted 12/11/2017 7:57 PM (GMT -6)   
Solaris719 said...
PeppermintTea said...
Update Solaris - I am not currently on Amoxicillin, my daughter is for a short period, she will then move onto combination therapy. I am on another "A" drug - Azithromycin. With four of us in treatment it is hard keeping everyone's protocols straight in my head. That is why I have to refer to a chart everyday.


Thank you, and I hope your family gets well soon!

My LLMD immediately started me on the combination therapy on 10/13: doxycycline 200mg 2x/day (tetracycline class), azithromyicin 500mg daily (Macrolide class), and tindamax 500mg 2x/day 3 days on then 4 days off (azole class, used for cyst busting) plus supplements. I did that for 8 weeks and recovered quite rapidly after the initial herxing, thought I was cured (I had no Lyme symptoms that I could identify the last 2-3 weeks, just side effects from antibiotics), but my symptoms returned within 3 days of stopping. I am back on the same combo but the doxy was switched out for Amoxicillin 850mg 2x/day (penicillin class) as the Doxy can be very very hard on your gut. I had to take it with food after the first week otherwise it would cause upset stomach and occasionally vomiting. The amox is supposed to be easier on your system but I was curious about how effective it is versus doxy and a major reason for my initial post. The combo antibiotic therapy is generally the way to go if you can handle it. I don’t think they recommend doxy for children under 9 years old.

The fact that I went from feeling cured to symptomatic within 3 days of stopping abx makes me wonder if I have undiagnosed babesia like you mentioned earlier. If my bloodwork comes back negative again this week I may ask my LLmD to Do the igenix testing to be sure.


How can you be sure that you had side effects from antibiotics...and they weren't infection symptoms?
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

Solaris719
Regular Member


Date Joined Dec 2017
Total Posts : 145
   Posted 12/12/2017 6:35 AM (GMT -6)   
Girlie said...
Solaris719 said...
PeppermintTea said...
Update Solaris - I am not currently on Amoxicillin, my daughter is for a short period, she will then move onto combination therapy. I am on another "A" drug - Azithromycin. With four of us in treatment it is hard keeping everyone's protocols straight in my head. That is why I have to refer to a chart everyday.


Thank you, and I hope your family gets well soon!

My LLMD immediately started me on the combination therapy on 10/13: doxycycline 200mg 2x/day (tetracycline class), azithromyicin 500mg daily (Macrolide class), and tindamax 500mg 2x/day 3 days on then 4 days off (azole class, used for cyst busting) plus supplements. I did that for 8 weeks and recovered quite rapidly after the initial herxing, thought I was cured (I had no Lyme symptoms that I could identify the last 2-3 weeks, just side effects from antibiotics), but my symptoms returned within 3 days of stopping. I am back on the same combo but the doxy was switched out for Amoxicillin 850mg 2x/day (penicillin class) as the Doxy can be very very hard on your gut. I had to take it with food after the first week otherwise it would cause upset stomach and occasionally vomiting. The amox is supposed to be easier on your system but I was curious about how effective it is versus doxy and a major reason for my initial post. The combo antibiotic therapy is generally the way to go if you can handle it. I don’t think they recommend doxy for children under 9 years old.

The fact that I went from feeling cured to symptomatic within 3 days of stopping abx makes me wonder if I have undiagnosed babesia like you mentioned earlier. If my bloodwork comes back negative again this week I may ask my LLmD to Do the igenix testing to be sure.


How can you be sure that you had side effects from antibiotics...and they weren't infection symptoms?


That is a good question! The only real issues I had the 2 weeks leading up to when I stopped were the diarrhea/loose stool/abdominal discomfort. I did notice a few dull headaches during this time too, so perhaps that could be more indicative of the Lyme infection. Still, do you think it was a good idea to switch to Amox from Doxy if I was feeling pretty well before? In theory i know it’s good to change it up to attack the Lyme a different way, prevent drug resistance, and give your body a little break. I think I may be starting to herx off the amox though, last night I was hit with massive fatigue and headaches and fell asleep quite early. I told my wife I haven’t felt that tired in probably years, she was asking me questions when I finally made my way off the couch upstairs to bed and i was basically too tired to answer, could only mumble a few things before I fell asleep. Here’s hoping it’s killing off these buggers and not the start of something like the flu!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 12/12/2017 3:17 PM (GMT -6)   
"....and will send my bloodwork to Igenx once the last IgM 23 is non-reactive and my symptoms are gone for a few weeks."


A LLMD should know that the results from an Igenex WB will not determine when to stop treatment.


Because you got such a good response with the doxy cocktail - if the amoxy isn't giving you results...in a short time..I'd be thinking about going back to the doxy..

Did you take it with food - as in a full meal?...to help with the stomach issues? The diarrhea is disconcerting for 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

Solaris719
Regular Member


Date Joined Dec 2017
Total Posts : 145
   Posted 12/13/2017 9:08 AM (GMT -6)   
Still awaiting results from C diff labs, 5 straight days of nothing but diarrhea since the switch to amoxicillin. Quite discouraging.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 12/13/2017 5:32 PM (GMT -6)   
Solaris719 said...
Still awaiting results from C diff labs, 5 straight days of nothing but diarrhea since the switch to amoxicillin. Quite discouraging.


Oh darn! ...sorry to hear.

Keep us posted, okay?
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

PeppermintTea
Regular Member


Date Joined Oct 2014
Total Posts : 266
   Posted 12/13/2017 6:59 PM (GMT -6)   
Fingers crossed those C diff tests come back negative. Make sure you are taking live probiotics during this process.

Solaris719
Regular Member


Date Joined Dec 2017
Total Posts : 145
   Posted 12/13/2017 8:09 PM (GMT -6)   
PeppermintTea said...
Fingers crossed those C diff tests come back negative. Make sure you are taking live probiotics during this process.


Thank you for the support! The C diff tests are negative my LLMD wants me to take the next 2 days off from antibiotics and then call him on Friday to resume some side of cocktail minus the amoxicillin, something about the amox definitely didn’t like my system. I had diarrhea quite often with doxy, but the amox made that even worse plus added abdominal pain/burning and cramping tonthe equation. No good! Do you have any recommendation on amount of probiotics to take? I purchased a 20 billion refrigerated brand a few days ago and have been trying that, wondering if 20 is enough or if I should take 2 pills.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32622
   Posted 12/13/2017 10:47 PM (GMT -6)   
Good news - no C-Diff!

I would start with one capsule for a few days...then you can increase to one twice daily.

If you can't fit it in to your schedule - then do two once daily - preferably 1.5 to 2 hours after your last antibiotic for the day.

I have a few different types - two in capsule form, one called Bio-K (mini cups with a probiotic like yogurt), and Kefir.

My total per day is 50 to 100 billion daily.

You can slowly increase your intake
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) : 12/13/2017 9:50:32 PM (GMT-7)

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