What Doctor Said About Abx Disturbs Me

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WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 2023
   Posted 4/7/2018 12:22 PM (GMT -6)   
Saw the Lyme doctor yesterday. I told her about the long period of worsening symptoms after I took 7 days of Augmentin in December for a sinus infection. I reminded her that the same thing happened a year ago after taking Minocycline for 7 days. I also told her that in the weeks that followed after the Augmetin that my head symptoms improved while my body symptoms worsened and wondered if the abx killed some stuff in my head.

She told me that the fact that I got so much worse after STOPPING the antibiotics meant that I needed to stay on them long term. She said the same thing at my first appointment back in October when I told her about the minocycline experience.

Frankly, I'm floored by that.

I pointed out that I had been sick for 8 years and had been on antibiotics a number of times prior to that and had never before had a worsening of symptoms from taking short term antibiotics and that no one had been able to explain why. She didn't offer any explanation at that point either.

What am I missing here? If antibiotics make me worse and leave me with months long herxes, how is that proof that I should be on them?

Am I crazy, or is she?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33893
   Posted 4/7/2018 12:34 PM (GMT -6)   
"If antibiotics make me worse and leave me with months long herxes, how is that proof that I should be on them? "


She's saying that they are causing a herx...ie killing the bacteria.



I wouldn't be surprised if the Lyme Dr. is and MD (not an ND) - as that's what they believe is the best treatment for Lyme and co's.
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

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2299
   Posted 4/7/2018 1:07 PM (GMT -6)   
Hi WalkingbyFaith,

I read this on Tiredoflyme site, it may be helpful.

You just need to get through the Goldilocks story and there is good information there.

www.tiredoflyme.com/goldilocks-method-how-to-efficiently-increase-your-treatment-for-chronic-lyme.html


Take care, Jo

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1157
   Posted 4/7/2018 2:55 PM (GMT -6)   
WalkingbyFaith,

While doubtful, maybe you can get your doctor to read/watch/listen to some of the many links I've posted in the following threads:

/www.healingwell.com/community/default.aspx?f=30&m=3996997
/www.healingwell.com/community/default.aspx?f=30&m=3985431
/www.healingwell.com/community/default.aspx?f=30&m=3882273
/www.healingwell.com/community/default.aspx?f=30&m=3956539

Perhaps hearing some of this information from other doctors will take some of the burden off you. You know how some doctors are -- they only believe something if it comes from the AMA, FDA, CDC, a pharmaceutical company, or another doctor.

If not, perhaps the information will help you in making decisions about what to try or what to avoid.

Don't be afraid to fire your doctor, if you aren't being heard, aren't taken serious, and/or aren't getting what you want/need. I know it can get tiring, but there are plenty of other doctors available.

Best wishes,
The Dude

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2023
   Posted 4/7/2018 5:05 PM (GMT -6)   
Thanks, guys.

Girlie,
This doctor is an ILADS trained DO. When I contacted her office about becoming a patient, I made it clear that I was treating herbally and did not want to do antibiotics. She agreed to take me anyway. My PCP had told me about her. She is from up north but comes to my town periodically to see patients. We have no Lyme doctors here that I am aware of.

Yeah. I kind of get why she thinks that, but still. If just taking 7 days of abx leaves me reeling for months on end, shouldn't I expect unbearable herxing to kick in if I stayed on them. I had NO improvement in symptoms while taking them. After taking Augmentin, during the weeks that followed I did notice my head felt better while my body felt horribly worse. But that was all in the weeks that followed, not while I was actually on it.

-------------------
Jo,
I'd seen that Goldilocks story before. Thanks for linking it again. It made me laugh. If only following the Goldilocks Method was really that simple and actually worked for me as far as feeling better instead of worse. I try doing that for the most part, except writing stuff down. I used to take notes, but stopped a long time ago.

-------------------
Dude,
I definitely feel like I don't get what I need, but I get the sense that a lot of the others who struggle significantly don't either, and we all have seen different doctors in various parts of the country. Money aside, part of my dilemna is there are no doctors here that I know of. There is an acupuncture clinic, which is where my appointment took place, but they do TCM, which I'm not really interested in. From what I understand of TCM, they basically treat symptoms (hot/cold) in order to "balance" the body and don't really get into what's causing the symptoms in the first place, which is what I'm interested in. (That undying need to know,)

I would have to travel hours away to find anyone else remotely useable. I can't imagine being in a car for more than 1.5-2 hours. I'm sure my car has mold, as it bothers me, and the exhaust fumes bother me, too. I did find a doctor in the Atlanta area online who does bioresonance and a lot of other things. He makes it sound scientific instead of New Agey, but that could just be a guise so as not to run people off or so he will be taken more seriously. I do not want to get into energy healing/New Age for personal reasons. I am curious about the bioresonance machines, though. If there really is something to it, it could possibly give me some much needed insight as to what my primary drivers are that are causing my symptoms and dysfunction. I'm not sure about the "treatments," though. I don't even really understand that part. It makes is sound like the machine also does the "treatments" to "balance" whatever is out of whack.

Why can't I just have what I want the way I want it? LOL

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33893
   Posted 4/7/2018 5:21 PM (GMT -6)   
WalkingbyFaith said...



Yeah. I kind of get why she thinks that, but still. If just taking 7 days of abx leaves me reeling for months on end, shouldn't I expect unbearable herxing to kick in if I stayed on them. I had NO improvement in symptoms while taking them. After taking Augmentin, during the weeks that followed I did notice my head felt better while my body felt horribly worse. But that was all in the weeks that followed, not while I was actually on it.



I think I misunderstood. So when you don't stop the abx...and continue taking them, you don't get herxing? Only when you're on them a short time and stop?
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 : 2023
   Posted 4/7/2018 5:31 PM (GMT -6)   
Girlie said...
WalkingbyFaith said...



Yeah. I kind of get why she thinks that, but still. If just taking 7 days of abx leaves me reeling for months on end, shouldn't I expect unbearable herxing to kick in if I stayed on them. I had NO improvement in symptoms while taking them. After taking Augmentin, during the weeks that followed I did notice my head felt better while my body felt horribly worse. But that was all in the weeks that followed, not while I was actually on it.



I think I misunderstood. So when you don't stop the abx...and continue taking them, you don't get herxing? Only when you're on them a short time and stop?


Girlie,

I've never taken abx long term, so I'm only assuming what would happen if I did. When I took minocycline for 7 days, it worsened my symptoms (herx) and that is why the doctor told me to stop at that point. (This was the first doctor - a Functional MD who'd been treated for Lyme herself and was not an advocate of herxing.) AFTER I stopped taking it, the herxing only got much worse and lasted for 2 months. I don't feel I ever fully recovered from that, and that was Jan 2017. I feel like it weakened me.

With the Augmentin, I had already started having a worsening of symptoms (return of joint/foot pain that had FINALLY almost gone away for a few weeks) and was sick with an acute infection at the time. I did not notice too much of a herx specifically from the Augmentin while I was taking it. It was in the weeks AFTER taking it that the herxing went bonkers much like what followed the minocycline.

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1157
   Posted 4/7/2018 5:47 PM (GMT -6)   
WalkingbyFaith said...

Dude,
I definitely feel like I don't get what I need, but I get the sense that a lot of the others who struggle significantly don't either, and we all have seen different doctors in various parts of the country.


I agree with your observations. But, that still doesn't make it okay! I'm not telling you what to do (or, not do), I'm just saying you deserve to find a practitioner that will listen to/hear you and that is a partner in your care, not a dictator. Personally, I wouldn't stay with any provider about whom I had nagging doubts. When there's a conflict between the body and the brain, I believe the body will be the truth and the brain will be the lie. Again, that's just my opinion. I didn't stay at a Holiday Inn Express, last night. ha...

WalkingbyFaith said...

Money aside, part of my dilemna is there are no doctors here that I know of. There is an acupuncture clinic, which is where my appointment took place, but they do TCM, which I'm not really interested in. From what I understand of TCM, they basically treat symptoms (hot/cold) in order to "balance" the body and don't really get into what's causing the symptoms in the first place, which is what I'm interested in. (That undying need to know,)


You could consider working with someone out-of-state, like Jay Davidson, DC or others. Granted, you would not be face-to-face with them for a physical examination, but all my local LLPA did was take my blood pressure, temperature, pulse, etc. You could work with someone via Skype/Facetime. In the second link in my last post, you will find two e-books and and an audiobook by Jay Davidson.

From your other comment, regarding Traditional Chinese Medicine, consider that modality is thousands of years old. Perhaps consider why that's the case. Can TCM help you? I have no idea. But, people like Dr. Rau, Dr. Jernigan, and Dr. Davidson (among others) suggest that it's not the microbes that are the problem, but the body's response to the microbes. I'm not saying this is correct or incorrect. But, it's interesting how two people can test positive for the same microbe and one person is symptomatic and the other is not. So, perhaps "balancing the body" makes sense. The body's own pharmacopoeia and innate healing wisdom is much more sophisticated than what doctors have to offer. Can antibiotics play a part? Absolutely! Nothing is an all-or-none proposition. Again, it's just a thought experiment.

As for your "undying need to know," I had that, too. Fortunately, for me, it passed.

WalkingbyFaith said...

Why can't I just have what I want the way I want it? LOL


I know! smile That made me think of the following quotes:

"We may not get what we want, when we want. But with a bit of perseverance and a lot of patience, we can get what we need."

"Remember that sometimes not getting what you want is a wonderful stroke of luck."

Follow your gut - even when it may seem uncomfortable to do so. Try new things, so you can have new experiences. You deserve to heal and I think you can. But, it may not be on your own timeline. Infinite patience yields immediate results.

Post Edited (The Dude Abides) : 4/7/2018 4:53:04 PM (GMT-6)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33893
   Posted 4/7/2018 6:42 PM (GMT -6)   
The Dude Abides said...



I know! smile That made me think of the following quotes:

"We may not get what we want, when we want. But with a bit of perseverance and a lot of patience, we can get what we need."



Similar to what the Stones sang in the 70's (or was it the 60's)

You can't always get what you want
You can't always get what you want
You can't always get what you want
But if you try sometimes you might find
You get what you need

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 : 33893
   Posted 4/7/2018 6:46 PM (GMT -6)   
WalkingbyFaith said...
Girlie said...
WalkingbyFaith said...



Yeah. I kind of get why she thinks that, but still. If just taking 7 days of abx leaves me reeling for months on end, shouldn't I expect unbearable herxing to kick in if I stayed on them. I had NO improvement in symptoms while taking them. After taking Augmentin, during the weeks that followed I did notice my head felt better while my body felt horribly worse. But that was all in the weeks that followed, not while I was actually on it.



I think I misunderstood. So when you don't stop the abx...and continue taking them, you don't get herxing? Only when you're on them a short time and stop?


Girlie,

I've never taken abx long term, so I'm only assuming what would happen if I did. When I took minocycline for 7 days, it worsened my symptoms (herx) and that is why the doctor told me to stop at that point. (This was the first doctor - a Functional MD who'd been treated for Lyme herself and was not an advocate of herxing.) AFTER I stopped taking it, the herxing only got much worse and lasted for 2 months. I don't feel I ever fully recovered from that, and that was Jan 2017. I feel like it weakened me.

With the Augmentin, I had already started having a worsening of symptoms (return of joint/foot pain that had FINALLY almost gone away for a few weeks) and was sick with an acute infection at the time. I did not notice too much of a herx specifically from the Augmentin while I was taking it. It was in the weeks AFTER taking it that the herxing went bonkers much like what followed the minocycline.


Okay - I see...after you finished it...the herxing continued and even worsened for 2 months. I understand your dilemma...
I have my own unique dilemma. My symptoms don't really follow patterns...I pore through my notes all the time - trying to see patterns...am I better on the meds...or off the meds. And the only patterns I see is there is no pattern. OY!!

(except for some obvious herxes - but I don't get symptom improvement after. The many symptoms I have lost...are uneventful...they slowly...ever-so-slowly....fade away)
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 : 246
   Posted 4/7/2018 6:53 PM (GMT -6)   
I think neither of you are crazy:

It seems to me that this doctor is acknowledging that the life cycle of borrelia and co are long and fairly semi-permanent as it stands in the infected body; sure you can flush it, eradicate it in places blasting away at biofilms and cysts, try to heal but it's a grueling battle that as far as we know can't be fully cured, just put into remission.

Yes you may feel worse after abx/strong herbs that is my understanding and experience. I've felt worse, taken 10 steps back to step 5 steps forward; and once you've taken too many of those steps you might start having those "is it worth it?" thoughts...

I can only offer the understanding that yes it is a nightmarish experience, made complicated by the fact that you don't know if it's the herx, the cytokines, your immune system or the actual bugs digging in again that are causing pain sometimes...

With blebbing and shedding and persisting and cysts, well yeah this is a long process, a grueling painful marathon made more painful by a system that sometimes ignores your suffering while you feel worse for the wear of abx, herx, cytokine cascade or just plain nerve damage from borrelia and co.


Anyway I feel you, we are all spoonies here.
Tick bite/EM rash +10 years ago
Active, athletic, with past concussions.
1st known bite: tick infested area, flu, chills, fever, neuro symptoms.
Treat with ABX/herbs recently (2-5 years now).
Get symptom free with strict diet: paleo/keto/IM fasting
Have done Buhner's Protocol, Doxycycline, Amoxicillin, Supplements.
IgG via IgeneX 31-IND, 41++, 58+ (Sep-2016)
IgM via IgeneX 31+, 41-IND (Sep-2016)

mpost
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Date Joined Feb 2015
Total Posts : 1527
   Posted 4/7/2018 11:48 PM (GMT -6)   
i did not get why u were floored for hearing u need abx long term. For acne, which is not a big deal and certainly non lethal, they give u 1 year of minocycline.

so what? as long as u test your liver regularily and take probiotics, there's little risk.

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1527
   Posted 4/7/2018 11:55 PM (GMT -6)   
Minocycline is widely used as a second-line antimicrobial for acne vulgaris. Some patients require doses of up to 200 mg daily to control their acne. To assess the long-term safety of minocycline when used at higher doses, 700 patients treated with minocycline at doses of 100 mg daily, 100/200 mg on alternate days and 200 mg daily, were recruited. The mean duration of treatment was 10.5 months.
/www.ncbi.nlm.nih.gov/m/pubmed/8733373/

Deejavu
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Date Joined Aug 2005
Total Posts : 4441
   Posted 4/8/2018 8:04 AM (GMT -6)   
Morning WalkingbyFaith,

In my non-medical opinion I think what your doctor said is scary in regards to being on long term abx after what you experienced from the abx you have tried.

First of all a herx lasting 2 months is extremely dangerous.

For those you are do not know the true meaning of a Jarisch-Herxheimer reaction:

When the immune system reacts to the die-off toxins. The body, in its quest to save its life, will try to rid itself of the poisons in any way it can, such as creating inflammation and mucus to isolate the poison. Throwing up and diarrhea to expel it. Fevers to sweat it out. Panting to expel it by breath. Palpitations to move toxins out of the blood. Rashes and hives to bring it out on to surface. This activity is a reaction to the die-off toxins.

www.lyme-symptoms.com/LymeDiseaseInfo/Die.Off.html

That said, not everyone is a candidate for antibiotics. I certainly was not. When I took Doxy it always ended up in the toilet bowl. I remember saying a mantra that I would not get sick to my stomach over and over again because I wanted the Doxy to work. But I did get sick too many times so I finally stopped it. I was already sick so it didn't make sense to me to make myself even more sick. I knew I had to find other options (which I did).

You do have other options (even though you do not have the availability of many doctors where you live) and that requires research, reading books, blogs, listening to videos, podcasts, etc. Everyone has choices. I followed a protocol from a book and that worked for me.

Looking back I wish someone had told me about the Borrelogen LUAT (Lyme Urine Antigen Test) where IgeneX found more dead lyme bacteria in patient's urine compared to abx. This information was presented at a lyme conference.

I hope you don't use abx as I feel they may hurt you (not help you) based on your past experience with them.

Denise
12 years well ~ used Dr. Jernigan's protocol from his book about Biological Medicine (used Borrelogen, Microbojen and Neuro-Antitox).

I still detox even though healed and drink Green Vibrance. I come back to help others for others helped me when I was sick. Pay it forward! smile

http://javuviews.wordpress.com/2013/04/24/how-i-became-better-from-chronic-lyme

WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 2023
   Posted 4/8/2018 8:53 AM (GMT -6)   
Girlie said...
"If antibiotics make me worse and leave me with months long herxes, how is that proof that I should be on them? "


She's saying that they are causing a herx...ie killing the bacteria.


I don't understand that from a logical perspective.

Took mino 7 days.
Started herxing while taking it.
Stopped after 7 days.
Herxing got exponentially worse to the point of becoming physically disabling (which I was not before taking it) and last 2 month.

I only took it for 7 days. If the herxing is proof that abx are "killing the bacteria," and the herxing went on for 2 months after stopping the abx, then how is the abx still "killing the bacteria" for 2 more months. That makes no sense to me.

Clearly, something else was happening. More likely, the abx induced a cytokine reaction that went out of control and remained out of control for 2 months. I clearly have a very dysfunctional immune response that goes beyond just herxing from bacteria dying (if they're dying at all). I do have HLA-DR genes for borrelia and multi-susceptibility to biotoxins. I also have mycotoxins from mold exposure. I also have a very difficult time detoxing for reasons I have not yet identified other than the HLA-DR genetic issue.

I think about all these things in a logical, rational manner, at least as far as I can tell, like a person who is trying to put pieces of a puzzle together. Unfortunately, none of the doctors I've seen seem to be able to do that. All they do is listen for me to say magic buzzwords that they can grab onto and make instant assumptions about (rather than actually perform accurate tests to see if their assumptions are right.) Examples: belly bloating = parasites; not being able to walk heel to toe without falling over = mold.

My dream doctor would talk to me in a conference room at a large table where we both could spread out notes and data. The conference room would have a large chalk or dry board that we could write on to try to map this stuff out. turn

WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 2023
   Posted 4/8/2018 9:14 AM (GMT -6)   
Denise,

Thanks so much for listening and responding and reminding me that I have options. I have been self-treating since June using Buhner's protocols. I have other issues besides just Lyme/co such as mold, a mouth full of amalgams, HLA-DR genetic susceptibility to borrelia and multi-susceptible to all biotoxins, probably other detox impairments, chemical sensitivities, etc. Like some others, I'm a complex case. Add to that my overly analytical and cautious nature and you've got somebody who's going to take a lot longer to get well and probably end up dragging things out longer than necessary only to look back with 20/20 vision and want to beat the crap out of myself for waiting so long to do/not do stuff that would have made things so much easier, faster, and less painful. (Or maybe want to beat the crap out of every doctor I've seen who could have made things go much easier, faster, and less painful if they had evaluated me properly and tested me thoroughly and had some competence in personalizing treatment that actually WORKED for ME and not just expect me to do well with what works for every other patient they have.) End of rant.

Just to be clear, I've never had that kind of severe herxheimer reaction like you described in your post - nothing life threatening. I've never been to the ER or hospitalized for anything Lyme related, and I'd like to keep it that way. What I got was painful, miserable tissue burning and inflammation (probably from toxins or cytokines); joint and muscle stiffness that got so bad I could barely walk (after mino); increased chemical sensitivities that hinder daily life (and still do); increased weakness, exercise intolerance, and fatigue that have never gone back to the level of my pre-mino self.

Post Edited (WalkingbyFaith) : 4/8/2018 8:19:42 AM (GMT-6)


WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2023
   Posted 4/8/2018 9:23 AM (GMT -6)   
borrelioburgdorferii said...
I think neither of you are crazy:

It seems to me that this doctor is acknowledging that the life cycle of borrelia and co are long and fairly semi-permanent as it stands in the infected body; sure you can flush it, eradicate it in places blasting away at biofilms and cysts, try to heal but it's a grueling battle that as far as we know can't be fully cured, just put into remission.

Yes you may feel worse after abx/strong herbs that is my understanding and experience. I've felt worse, taken 10 steps back to step 5 steps forward; and once you've taken too many of those steps you might start having those "is it worth it?" thoughts...

I can only offer the understanding that yes it is a nightmarish experience, made complicated by the fact that you don't know if it's the herx, the cytokines, your immune system or the actual bugs digging in again that are causing pain sometimes...

With blebbing and shedding and persisting and cysts, well yeah this is a long process, a grueling painful marathon made more painful by a system that sometimes ignores your suffering while you feel worse for the wear of abx, herx, cytokine cascade or just plain nerve damage from borrelia and co.


Anyway I feel you, we are all spoonies here.


Thank you, Bb, I agree. It is a long, rough road to travel. Much rougher for some than others, unfortunately. Maybe someday there will be a way to quickly and accurately identify and correct the reasons for that.

Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 385
   Posted 4/8/2018 1:26 PM (GMT -6)   
Have you thought about cold laser therapy? I just started, so I don't really know what it will do, but the first time I went, I got the worst herx I've had in months. I know it wasn't my imagination, because I didn't think it would work, and I still don't believe in muscle testing, but it definitely did something. I'm really glad though that the herx got better after three or four days- I just wouldn't have been able to stand it any longer.

I'm not sure if you could find someone who does it.

I know what you mean about being too cautious and analytical- that's me. I only decided to do it because I got persuaded by my family, who are really tired of me being sick. I do know some people who really got rid of their lyme using it though- I'm just always suspicious that people who say they're better actually aren't, because I did that for a while.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33893
   Posted 4/8/2018 1:33 PM (GMT -6)   
Notime4lyme said...


I know what you mean about being too cautious and analytical- that's me. I only decided to do it because I got persuaded by my family, who are really tired of me being sick. I do know some people who really got rid of their lyme using it though- I'm just always suspicious that people who say they're better actually aren't, because I did that for a while.


Or when you talk to them they say they only have a handful of issues that they deal with as it’s likely damage.
Heck I’ve whittled my symptoms down to about 8 or less now but I’m not stopping there. I think they’re still 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

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4441
   Posted 4/8/2018 2:12 PM (GMT -6)   
Hi WalkingbyFaith,

The reason I brought up what a herx "could" do to a person was for everyone who is reading this thread, I didn't mean it was you personally that suffered that type of herx. What led me to even post about herxes was that you mentioned you had a 2 month herx.

As far as mold, etc. I keep a list of links that pertain to people that my links apply to. The link below is from a blog which addresses mold, how to get rid of it, chemical sensitivities, etc.:

hansacenter.blogspot.com/2016/09/mold-illness-and-dealing-with-sources.html

Part of the above blog states this:

Bio-Toxin Protocol: Biological Medicine Approach

This is the Biological Medicine approach to lab tests requested by specialized mold physicians: Dr. Richie Shoemaker, Dr. Mary Ackerley as well as my clinical experience with chronically ill patients.

Removal from exposure

Many mold sufferers feel trapped. They don’t know how far they should go to remediate the mold they have in their dwelling. Many resort to abandoning their dwelling place and sometimes the families that stay there. I am not saying you should stay in a mold infested home but there are some things you can do to help. Ideally you could use a mold test called ERMI (Environmental Relative Moldiness Index). You want to try and get this number under 2. To clean your environment I have what I would use as a wash solution based on the Essential Oil Tea Tree (Melaleuca) due to its effects on mold.

An easy wash solution to make:

Use Melapower 6x with a few extra bottles of Melaleuca Oil added in.
· Remedy main area of concern by removing all things from affected area of home
· Move everything outside under a tent and let air get into everything.
· Wash walls with solution above
· Wash hard surfaces with solution above
· Clean Vents and HVAC Coils using the solution above

Further down states:

The more complicated physiological ways to aid in your mold recovery are as follows:

It is important to eliminate the toxic burden that accompanies mold. There are many ways to achieve this. We utilize some of the best naturally based binders. One of those is Enterosgel which is based on organic silicon and designed to remove toxic substances out of the body as well as to regenerate proper microbiomes. Enterosgel destroys pathogenic microorganisms in the GI tract.

Enterosgel absorbs the byproducts of microorganism breakdown. Gram-negative and gram-positive microbes as well as Candida and molds succumb to adhesion and destruction, but the product does not adhere nor destroy saprophyte microflora of the digestive tract like the species of (Lactobacteria, Bifidobacteria, etc.).


PureBlack Carbonized Bamboo is effective as a mycotoxin binder. Other methods of toxin removal you may have available to you are: Infrared Sauna, Activated Charcoal, Chlorella, Detox Baths, Ammonia Support, Pulsed Electromagnetic Field Therapy (PEMF), and Cholestpure by Pure Encapsulations, Inc., taken on an empty stomach.

Aid the body’s removal of antibiotic resistant Staph within the nasal cavity. This bacterium further interferes with the body’s natural immune system and depletes MSH, a hormone responsible for proper function of multiple neuro-immune pathways.

We use various products such as Argentyn 23™ which is one of the most researched and the most effective nano-particle silver hydrosol, used to aid the body’s natural antimicrobial defenses. Argentyn 23 is designed to provide safe and precise levels of functional silver. Argentyn 23™ features a unique particle size (average 0.0008 microns) and ultra-fine dispersion that may enhance bioavailability of silver ions. The silver content is 99.99% pure. Argentyn 23™ is a powerful, natural antibiotic and disinfectant.

When Argentyn's silver particles enter a microbe, it inhibits the microbe's metabolic enzymes necessary for energy utilization. Microbes cannot build a resistance to the action of silver. In fact, there are no known organisms that can completely withstand the impact of silver. Other products we use include: Jernigan Nutraceuticals, Inc. products, Quintessence, RainTree Products, Researched Nutritionals, and biofilm disrupters, such as Protease.

And more:

Correcting Your Body's Internal Environment to Combat Fungal Infections:

Many people don't understand the need to remove gluten from the body. One important rule to help with mold toxicity is to correct gluten antibody. To do this one must assume you are gluten sensitive or even celiac and remove it from your diet. Gluten acts upon the tight bonds of the intestinal wall and blood brain barrier. These bonds are called Zonulin. If Zonulin’s hold on the cells is loosened, the gut and subsequently the blood brain barrier may become permeable. Removal of gluten as an offender of intestinal and brain integrity is of upmost importance.

Hormonal imbalances are a large factor in overcoming many illnesses, including that of mold illness. We use Labrix or Diagnos-Techs which are great salivary hormone labs that can be performed for relativity low upfront costs. It is important to make sure to test estrogens, testosterone, progesterone, DHEA, and 24-hour cortisol levels.

Denise
12 years well ~ used Dr. Jernigan's protocol from his book about Biological Medicine (used Borrelogen, Microbojen and Neuro-Antitox).

I still detox even though healed and drink Green Vibrance. I come back to help others for others helped me when I was sick. Pay it forward! smile

http://javuviews.wordpress.com/2013/04/24/how-i-became-better-from-chronic-lyme

sandyfeet
Regular Member


Date Joined Mar 2018
Total Posts : 386
   Posted 4/8/2018 2:56 PM (GMT -6)   
WalkingbyFaith said...


My dream doctor would talk to me in a conference room at a large table where we both could spread out notes and data. The conference room would have a large chalk or dry board that we could write on to try to map this stuff out. turn


Oh what a wonderful world that would be WalkingbyFaith! If you ever find this doctor could you please let us all know as I would travel great lengths for this!

I did once have a wonderful nurse practitioner who listened and shared relevant personal experiences. That was pre-lyme and in a different city but I do think back wistfully quite often.

I think you're right to listen to your own gut and keep searching for this relationship or at least someone wiling to entertain a bunch of different theories, it sounds like you have so much going on to figure out.

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2474
   Posted 4/9/2018 10:16 AM (GMT -6)   
mpost said...
i did not get why u were floored for hearing u need abx long term. For acne, which is not a big deal and certainly non lethal, they give u 1 year of minocycline.

so what? as long as u test your liver regularily and take probiotics, there's little risk.


In my opinion, this is sadly one of the biggest abuses (misuses) of abx (for acne), causing long term potential gut and immune issues for something superficial and non-lethal. They (medical community) are completely missing the boat on this one. It should be a last resort after all other options explored for treatment, but sadly, that is not the case in our medical community.

So, I respectfully disagree.

BookWyrm
New Member


Date Joined Feb 2017
Total Posts : 18
   Posted 4/9/2018 10:27 AM (GMT -6)   
Ok, so I have seen that most of y'all have not done long term abx treatment. I actually went thru this for about a year and a half. Yes it was scary and yes it did take some extra work, BUT I went into remission so it was worth it. I had lyme and Co misdiagnosed for about 10 years so by the time I was correctly diagnosed I was on death's doorsteps so I kinda had to go extreme. Basically I took 3 different abx and swapped the combination of abx each month. I took herbs to help support my liver and other organs to deal with the heavy doses and to help with herxing. I also took strong probiotics and had my blood tested every month to check on how my body was coping with the meds. My head became clear first and it took my body awhile to work out the herx. Some months I didn't herx at all or had minimal reaction and some months it was a battle to get through each day. As my LLMD likes to say the worse you herx now the better you will feel later. I also had developed food allergies and a crazy amount of yeast from taking just small, short term abx previously so I had to go cold turkey on those foods/sugar and be very strict with my detox. My LLMD was a big supporter of finding out what caused the symptom vs putting a Band-Aid on it, e.g. lyme co in the brain is giving you headaches and treating the Co vs just giving you migraine meds.

But the thing with lyme is that it hits us all differently. Some of us catch it early and some, like me, go years not knowing. The key is to do what works for you. Find a doctor that is lyme literate and who will listen and work with you. What works for me might not work for you. We are each different and that is what makes this so hard to treat sometimes. The most important thing to do is to never give up. Always keep pushing forward and never stop looking.

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2474
   Posted 4/9/2018 10:29 AM (GMT -6)   
WBF, I feel your pain. I really do. And I completely understand where you are coming from.

As you know, Kid#2 was an epic abx failure. He was on abx to try to proactively treat, and he was a highly functioning kid previously. However, while on abx (for years), he turned into a completely non-functioning kid who could not attend school. And he continued to get worse and worse on abx. The best decision I made was going off abx and switching to herbals and other treatments. He slowly improved and started attending school regularly again. For him, abx is not the answer. (He is better now but certainly still not well.)

I know somebody who was given abx after abx for years through multiple LLMDs. Finally, he switched doctors, and she eventually took him off all abx as he continued to decline. In his case, he improved with herbals, mold treatment, and MCAS treatment. My point is -- there can be multiple things going on, making for a very complex situation to treat.

Just because we choose a herbal pathway doesn't mean I'm against abx. Quite the contrary. I definitely believe they have their time and place (and what that is ... is highly debatable!). I am definitely a believer in finding the right path for you. You will hear success and non-success stories with both abx and herbals.

If abx works wonderfully for a given person, it doesn't mean that with your combination of issues that abx is the way to go. I trust you in your instincts of how you react to abx.

I also believe that "something else" is going on with you (sounds like you have some good ideas though!). I believe I understand where you are coming from. I believe my kids are difficult to treat because of "something" with their immune systems, and to this day, I really still don't know. I got Kid#1 healthy, but I will probably never fully understand why or how I got here (even though I lived through it with the treatments). We had so many epic failures in both mainstream and alternative medicines.

I can't imagine what you are going through - living with relatives and not in your own space. I think about how difficult that must be for you. I hope it's going okay. Did you have to give up an apartment/house to get away from the mold environment then?

Anyways, just some rambling thoughts. I don't have the answers for you, but I'm thinking of you and wishing the very best for you! HUGS!
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2474
   Posted 4/9/2018 10:35 AM (GMT -6)   
BookWyrm said...

But the thing with lyme is that it hits us all differently. Some of us catch it early and some, like me, go years not knowing. The key is to do what works for you. Find a doctor that is lyme literate and who will listen and work with you. What works for me might not work for you. We are each different and that is what makes this so hard to treat sometimes. The most important thing to do is to never give up. Always keep pushing forward and never stop looking.


^ I totally agree with this.

BookWyrm said...

Ok, so I have seen that most of y'all have not done long term abx treatment. I actually went thru this for about a year and a half.


^ I've been on this board for awhile, and I've seen numerous ones here on this board who have failed long term abx. I also know numerous people IRL who fail long term abx too. Two of my kids were on them longer than 1 1/2 years. sad It wasn't the answer for them.
One of my regrets is not stopping abx sooner.
It's so complicated. What works for one person doesn't necessarily work for another person, and I learned that the hard way as Kid#2 does not respond the same as the successful treatments for Kid#1 (think how similiar their genetics are too!).
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