Not a single herx after many antibiotic and natural treatments = ???

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

cppoly
Regular Member


Date Joined Nov 2013
Total Posts : 370
   Posted 3/13/2018 11:53 AM (GMT -6)   
I’m trying to use logic here to conclude that since I tried all of the following antibiotic and natural treatments below and since I did not have any herx reactions (or anything remotely close to a herx), that therefore I do NOT have any active infections. Is this a valid argument/assumption to make?

• Mepron
• Bactrim DS
• Azithromycin
• Borrelogen
• Lymogen
• Neuro-antitox basic CNS/PNS
• Molybdenum
• Byron White A-L Complex
• Byron White A-Bart
• Berberine and wild bear liquid garlic for 3 month protocol
• Byron White formulas: A-Myco, A-Inflam, A-EB/H6;
• Soluna #9 Lymphatik N, Soluna #14 Polypathik N, Soluna #15 Pulmonik N, Soluna #19 Stomachik
• Castor oil pack to pull toxins out.
• Heavy metal detox
• 4 weeks of two IVs with UVB and Drainage IV (15 remedies handpicked to correlate with bioresonance testing)
• IV therapy with Silver for 4 weeks
• DMPS IV and vitamin c IV in 4 weeks.

Nothing listed above had any side effects (positive or negative) with me and all are listed in chronological order (or the best I can recall from my notes).

I've read many postings on here that people who have tried just one of those treatments have had severe herx reactions, and I've tried many more. I understand that each person can react differently and different "degrees" of herxing, but I mean come on to not have a SINGLE reaction to any of the above..... it just doesn't make sense.

At the very least, can we at least conclude it is extremely unlikely that I have any active infections given everything I’ve tried?

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1988
   Posted 3/13/2018 11:56 AM (GMT -6)   
What symptoms do you have?

cppoly
Regular Member


Date Joined Nov 2013
Total Posts : 370
   Posted 3/13/2018 11:59 AM (GMT -6)   
My only symptom is chronic insomnia for over 10 years. I also have sleep apnea so I'm just trying to rule out lyme and coinfections even though I had some positive results for lyme and babesia.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1988
   Posted 3/13/2018 12:15 PM (GMT -6)   
Were you treating with an LLMD? What does the doctor think about this?

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1988
   Posted 3/13/2018 12:23 PM (GMT -6)   
cppoly said...
My only symptom is chronic insomnia for over 10 years. I also have sleep apnea so I'm just trying to rule out lyme and coinfections even though I had some positive results for lyme and babesia.


Is insomnia the only symptom you ever had? Did you have other symptoms at the time you tested positive for Lyme and babesia?

What type of tests did you have - Labcorp WB? Igenex?

cppoly
Regular Member


Date Joined Nov 2013
Total Posts : 370
   Posted 3/13/2018 12:25 PM (GMT -6)   
Yes I saw two LLMDs. The first one gave me the antibiotics (the first three items that I listed above) and the second did natural therapy with me (byron white protocol, IV therapy,etc). The second LLMD I spent $10,000 on. Neither LLMD gave me a definitive answer to conclude I don't have any active infections. So I just stopped going to them after spending so much money.

Edit:

To answer your question I never had any other symptoms ever.

Blood work results showed:

Lyme C6 peptide positive tests twice. From my understanding this test is 99% specific and to test positive twice is very significant.

Labcorp mostly to confirm babesia ducani 1:256, Epstein-barr 2.86, chlamydia pneumoniae 1:64

Western blot from Stony Brook labs just bands 31, 41, and 72.

Post Edited (cppoly) : 3/13/2018 11:30:16 AM (GMT-6)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 3/13/2018 1:29 PM (GMT -6)   
cppoly - this is a tough one...I'm not sure what to say.

Re: insomnia - have you corrected the sleep apnea with a cpap or an appliance?

- have you had adrenals tested?

maybe do three months of a good bart protocol (pharma) with Rifampin...so you know you've tried that as well.
Bactrim isn't enough for bart most times.


How long did you stay on the antibiotics? If it was just a month - maybe not long enough?
(Sorry if you already stated and I missed 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

Post Edited (Girlie) : 3/13/2018 12:33:24 PM (GMT-6)


cppoly
Regular Member


Date Joined Nov 2013
Total Posts : 370
   Posted 3/13/2018 1:41 PM (GMT -6)   
Thanks Girlie, I know I'm a tough one - no one can figure it out sad

CPAP and oral appliances are not working whatsoever that why I'm revisting Lyme.

Adrenals were slightly out of range because I'm just simply assuming it's because my sleep is so fragmented that the adrenals would come back slightly out of whack. Same for cortisol, etc.

What's the bart protocol you're mentioning?

I did do Byron White A-Bart and I hear Byron White formulas make people herx like crazy since they're so strong.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1988
   Posted 3/13/2018 1:59 PM (GMT -6)   
"CPAP and oral appliances are not working whatsoever that why I'm revisting Lyme."

They're not working to help the insomnia, or they are not working for the sleep apnea and you still stop breathing?

Have you been evaluated by an ENT or other doctor for any physical abnormalities that could be causing the sleep apnea?

Have you been to a cardiologist? I'm wondering if there are any heart malfunctions that could cause sleep apnea.

cppoly
Regular Member


Date Joined Nov 2013
Total Posts : 370
   Posted 3/13/2018 2:20 PM (GMT -6)   
Thanks for the questions, but can I assume since all these are not Lyme related that you're in agreement with me that I don't have any active infections =)

Yea I've been evaluated by a few ENTs and also had several sleep apnea surgeries and even MMA (maxillomandibular jaw surgery) to enlarge my airway. This hasn't helped so I am back on CPAP and oral appliances again but these aren't helping either. So I'm just in disbelief. I've also been to several cardiologists. My heart is great.

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 5081
   Posted 3/13/2018 2:48 PM (GMT -6)   
Obviously two different things here, which both result in lack of shuteye. Apnea and insomnia.

Since Apnea is body - mechanical air obstruction, usually happening to "back sleepers" waking from gagging/ air blockage, can you sleep on your side with out air obstruction?

Insomnia is off balance of body chemistry, not body mechanical. Apnea Drs dont understand this area, since its not Apnea.

Insomnia can be caused by anything that can offset the body/brain chemistry. Infection, gut health, thus nutrient issues (low or high vits/minerals/amino acids, genes ect. So its possible this part is from lyme and is separate from Apnea.
Had initial lyme symptoms late 80's, then again and with bullseye early 90's. Ended ABX for Lyme in 2015. Rebuilding / fine tuning / fixing muscles since then; member "10 Percenters Lyme Club". What an adventure this has been. Hashimotos adds to the enjoyment.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 3/13/2018 2:53 PM (GMT -6)   
I was sleeping fine, quietly prior to Lyme.

Then after Lyme I started to wake up every couple of hours thru the night - gasping for air, sweating .
My husband had to start wearing earplugs because of my noisy breathing along with the episodes.
He called it a horror movie (sounds I was making)

Sleep monitor showed moderate obstructive plus some central sleep apnea.

I tried the cpap for 30 days but it didn’t help.

With treatment it has improved - I no longer wake up in the night - I do wake up early morning tho and go back to sleep.
I saw an ENT when it was bad and he did a procedure to look at my vocal cords with a camera - and I also had a barium swallow X-ray.
They were all fine.

I’m planning on doing the sleep monitor again - to see if my apnea is better.

I had bad muscle atrophy from Lyme/CO’s and think maybe that affected my throat area and could have caused the apnea.

I just noticed a few days ago that my calf muscles are good again - not jello with saggy skin.
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 : 33798
   Posted 3/13/2018 2:57 PM (GMT -6)   
I’m thinking it’s possible that Neuro Lyme has caused the central sleep apnea as it originates in the CNS
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

cppoly
Regular Member


Date Joined Nov 2013
Total Posts : 370
   Posted 3/15/2018 7:53 AM (GMT -6)   
Girlie if it is Neuro Lyme, wouldn't all the stuff that I've taken somehow addressed that? That's interesting that you mentioned that because I have central apneas a lot when using my cpap machine. Although, I don't have central apneas without the machine.

borrelioburgdorferii
Regular Member


Date Joined Feb 2017
Total Posts : 245
   Posted 3/15/2018 8:44 AM (GMT -6)   
I'm interested in this also as I have central + obstructive sleep apnea and use a VPAP device. I still don't know if it addresses the central apnea or if I need a different machine. I use a ResMed VPAP ST. I find that it helps my sleep issues, whenever I remember to strap the mask on before I doze off, my sleep quality is about 60% better than usual. I have a decent amount of energy for the day about half of what it used to be when I get a full night's sleep with the VPAP machine.

Like you I'm concerned that I have some deterioration of my CNS that is causing it, from borreliosis and co-infections, and would look to try to repair somehow myelin and nerve health (NT Factor? I don't know). So I wouldn't rule it out that it was lyme n co all along and that is your long-lingering symptom of sleep issues, apnea, insomnia.

And Girlie if you try a different mask it may help, I couldn't sleep with the full plastic nose and mouth cover one, I use a nasal pillow now and it's more gentle and quieter.

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2539
   Posted 3/15/2018 9:59 AM (GMT -6)   
cppoly - I too haven't had a very strong reaction to abx. They do usually cause two things to happen for me - insomnia and irritate bladder. Other than that, not much. These two things don't ease up over time, so not sure if it is a herx.

I've also taken full doses of A-Bart, A-L and had nothing happen. I am high on c-6 test too.

My sleep is all over the place. Currently in a good place so I just made note of everything new I'm doing in hopes that I can target the issue. New stuff: New non-toxic mattress (Avocado Green), Olive Leaf extract (GAIA) at lunch, Rhodiola (breakfast & lunch), Holy Basil (dinner), Collagen in morning coffee, 4-7-8 breathing (2x a day), zinc, liposomal biocidin. Unless it's a fluke, it has to be one of these things. I'm somewhat thinking it's the rhodiola or olive leaf. I had a good patch of sleep before and I may have been taking those then.

Traditional sleep stuff does not work for me (ambien, melatonin, GABA, l theanine, etc). I think my issue may be high epinephrine (adrenaline). Phosphatidylserine worsened my insomnia.

Post Edited (k07) : 3/15/2018 11:20:16 AM (GMT-6)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 3/15/2018 11:02 AM (GMT -6)   
cppoly said...
Thanks Girlie, I know I'm a tough one - no one can figure it out sad

CPAP and oral appliances are not working whatsoever that why I'm revisting Lyme.

Adrenals were slightly out of range because I'm just simply assuming it's because my sleep is so fragmented that the adrenals would come back slightly out of whack. Same for cortisol, etc.

What's the bart protocol you're mentioning?

I did do Byron White A-Bart and I hear Byron White formulas make people herx like crazy since they're so strong.


Rifampin or Rifabutin.

Bactrim generally isn't good enough to treat bart pharmaceutically.
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 : 33798
   Posted 3/15/2018 11:06 AM (GMT -6)   
cppoly said...
Girlie if it is Neuro Lyme, wouldn't all the stuff that I've taken somehow addressed that? That's interesting that you mentioned that because I have central apneas a lot when using my cpap machine. Although, I don't have central apneas without the machine.


Well that's odd. What do the sleep specialists say about that? The cpap causing the central sleep apnea?


• Mepron
• Bactrim DS
• Azithromycin

Those are what you've tried pharmaceutically?

How long did you try those? I would try minocycline.
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 : 33798
   Posted 3/15/2018 11:09 AM (GMT -6)   
borrelioburgdorferii said...


And Girlie if you try a different mask it may help, I couldn't sleep with the full plastic nose and mouth cover one, I use a nasal pillow now and it's more gentle and quieter.


Well, I'm sleeping fine now...and what prompted my Dr. to give me the sleep test was the fact that

a) I was waking in the night a few times gasping for air.

b) My husband said I was making a lot of noise...not like a snoring noise...but scary noises...like i was having nightmares...


So, I will plan to wear a monitor again.

i am rested in the morning. and I don't feel sleepy during the day.
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

borrelioburgdorferii
Regular Member


Date Joined Feb 2017
Total Posts : 245
   Posted 3/15/2018 4:14 PM (GMT -6)   
Girlie said...
i am rested in the morning. and I don't feel sleepy during the day.


Well that's more than me, nice and good that you feel like you have refreshing sleep, never mind the nightmares I have some of those,

I have terrible days if I don't wear the mask and let myself have 6 hours if I can get that without waking up, it's sad being relatively young that I need a machine to help me breathe at night, but it makes a big difference in the energy I have during the day

to use the spoon metaphor...(without mask n machine=1-2 spoons, with machine it's like 3-7 spoons) whereas I used to have 10-plus maybe more spoons a day at my disposal what I imagine a normal person's energy would be, never mind the sleep deprived state being it's own problem mentally/physically.

and one last thing, not that it's remarkable to have legit sleep apnea and know something is wrong... at the sleep study, the sleep technician said rather matter of factly and with mild concern "oh you've got it."

If you have insurance to pay for it I highly recommend sleep studies (I did two because at the first one i had a panic attack lol), but I wouldn't plunk down 300/3000 or whatever it costs cash btw..

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 3/15/2018 4:45 PM (GMT -6)   
I don't get the sleep study where you go in a room and they watch you sleep all hooked up to monitors.


I get tested at home. Just something around my chest and another thing on my finger (I think that one tests oxygen)


So, not ideal...but it did pick up both Central and Obstructive sleep apnea.

the Central concerns me the most.
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
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, August 15, 2018 7:59 AM (GMT -6)
There are a total of 2,992,843 posts in 327,993 threads.
View Active Threads


Who's Online
This forum has 161205 registered members. Please welcome our newest member, Prakash33.
249 Guest(s), 9 Registered Member(s) are currently online.  Details
suppwife, Ak123, cashlessclay, sebreg, Globetrotter, k07, straydog