Can herxheimer start later?

[kali]

Hi everyone, I so appreciate everyone’s last responses to my questions about a flare. Well, it got better after about 8 days had passed since taking the diflucan. Then today, I was feeling fine and ate 2 pieces of candy corn and I swear my sx all erupted again. Along with a sick stomach, rapid heart beat, chills, chattering teeth..feeling like I had the flu! I feel like my whole system has changed. I have been on doxy for 4 months. Is it just now starting to peel back the layers? I thought the worst was over. Can herxing take place at any time throughout the treatment process?
Thanks to all,
Kali

[Maz]

@kali wrote:

I have been on doxy for 4 months. Is it just now starting to peel back the layers? I thought the worst was over. Can herxing take place at any time throughout the treatment process?

Hi Kali,

According to my old Lyme doc, yes, herxing can come in rounds as different bugs are more susceptible to antibiotics at different times in their life cycles. In the case of Lyme spirochetes, herxing can occur in monthly cycles, for instance.

That said, it’s easy to put down everything to herxing and passing flu bugs or colds can sometimes feel like a herx, too. Although, I have found, personally, that I never catch colds while on tetracyclines. Interestingly, Brown talks about this in the book, too. Very strange, considering that a cold is a virus and supposedly not susceptible to abx! However, they are now using minocycline to prevent HIV from breaking out into full-blown AIDs, so this kind of speaks to how well the tetras work as immune-modulators and may even have some anti-viral suppressive props.

People who are weaning other DMARDs or a biologic drug can also experience late herxing, as the immune system begins to wake up again and to recognize the bugs. This can be unnerving when also having to deal with drug re-bound, which is why the weaning process needs to be taken slowly in a measured kind of way.

Also, the thing to remember about AP is that it is not immune-suppressive, so flares can and will still occur until remission is reached. These should, however, start to become less intense, shorter in duration and less frequent as time goes on. Again, Brown talks about one of his longstanding patients in the book who was in a pretty stable remission but then experienced a flare. He advised that she take another round of IV clindamycin to knock out the flare and there are a number of people here who will do this if they notice they have stalled out on the therapy at some point along the way.

Any reason why you decided on doxycycline rather than minocycline? Sorry if you’ve answered this already…I’ve been away so I may be a bit out of the loop. 😉

Whether herxing or flaring, however, doing what you can to detox can only be supportive. Essentially, the mechanism for both herxing and flaring is the same – just different causes. That is because it is the toxins the bugs release to which rheumatic is sensitized and they can release these toxins when under threat (e.g. from abx, sauna, herbals, etc) or just in the normal course of their life cycles. So, treating the herx or flare would be the same, as both produce uncomfortable symptoms as a result of circulating antigen (antigen = toxin).

Another consideration in the process is that sometimes when “peeling back the layers,” as you so aptly put it, other underlying coinfections can rise to the surface. This may be due to the fact that we now know that many of the offending bugs that affect rheumatics get holed up in bio-film communities. Candida, for instance, lines the gut mucosa, which is naturally full of bio-film. These bug colonies confer survival strategies upon one another, chemically communicate with one another, and will send out front line ‘soldiers’ while other bugs will sit back and enjoy the protection. When the front line soldiers are weakened, then the next line of ‘soldiers’ can emerge. This is why you might hear folk talking about bio-film busting here or adding a second or third complimentary abx to their protocol in order to get wider coverage.

All that said, the worst of my continuous herxing ended after about 3 months and I was pretty severe. It then seemed to hit in cyclical rounds, because I have Lyme. My doctor would monitor my labs on a monthly basis and this was a good gauge of how well I was responding to therapy. Labs will quite often worsen in the early months of AP while herxing is going on and then these should begin to slowly come down over time with the odd spike here and there if flares occur.

This may be much more than you wanted to know, but hope something here might help along the way. 🙂 Hope you feel better soon, Kali.

[kali]

This may be much more than you wanted to know, but hope something here might help along the way. Hope you feel better soon, Kali.

Maz,
This is great information! I understand the peeling away now. But lets say there are other trapped ‘bugs’ in there that aren’t bacterial. You mentioned candida. Should it be treated with an anti-fungal? I can just imagine now that what may have happened with the diflucan is while the abx was peeling away that bio film – I hit my system with the diflucan and BOOM! A rush of die off and subsequent toxic overload to my system. But now it seems like my sx are set off so easily. If I eat the wrong thing look out. Like yesterday – the two small pieces of candy and my pain was right back. This must be a sign of toxicity and ph imbalance? Could it be a sign of another kind of bacteria in my gut? Maybe from the abx – like C. diff or h. pylori?

You asked about the choice of doxy rather than mino. That was really my docs call. I guess the literature he read mentioned doxy or he recalled that more so that is what he prescribed even though I asked for Mino. Now, he is hesitant to switch me. I have several good arguments when I see him as to why he should switch me this time…one being yeast. The other fact is that I am experiencing quite a few stomach issues and I am hoping that I can get by on less mino than doxy. I will let you guys know if this happens.

Thanks again Maz 🙂

[Maz]

@kali wrote:

But lets say there are other trapped ‘bugs’ in there that aren’t bacterial. You mentioned candida. Should it be treated with an anti-fungal? I can just imagine now that what may have happened with the diflucan is while the abx was peeling away that bio film – I hit my system with the diflucan and BOOM! A rush of die off and subsequent toxic overload to my system. But now it seems like my sx are set off so easily. If I eat the wrong thing look out. Like yesterday – the two small pieces of candy and my pain was right back. This must be a sign of toxicity and ph imbalance? Could it be a sign of another kind of bacteria in my gut? Maybe from the abx – like C. diff or h. pylori?

You asked about the choice of doxy rather than mino. That was really my docs call. I guess the literature he read mentioned doxy or he recalled that more so that is what he prescribed even though I asked for Mino. Now, he is hesitant to switch me. I have several good arguments when I see him as to why he should switch me this time…one being yeast. The other fact is that I am experiencing quite a few stomach issues and I am hoping that I can get by on less mino than doxy. I will let you guys know if this happens.

Hi Kali,

You’re amongst compadres here, Kali, as many seem to experience this hypersensitivity thing and things that were fine before seem to create problems when the rheumatic disease arises….meds, foods, soaps, chemicals, etc. My best fellow-patient guess is that leaky gut is at the root of this. With 70% of immune function arising from the gut, it just seems the logical place to begin sorting out what needs healing first. There is an AP doc in NYC who has a focus on leaky gut issues and you can read about it here:

http://mdheal.org/leakygut.htm

Yes, when there is candida overgrowth in the gut, then a systemic, like diflucan, can help to bring this under control, but diet is also very important (eliminating sugars that feed the candida). Probiotics can help prevent candida overgrowth,but unfortunately, once it settles in, it needs the heavy guns to get rid of it. That said, there is some newer research emerging now from another AP doc in AZ who is strongly supportive of Brown’s work and who has discovered what he thinks may be what he calls, “the premier pathogen,” in all inflammatory diseases, including RA, MS, ALS, fibromyalgia, chronic fatigue, etc. It was originally named FL1953, but has now been dubbed, “Protomyxozoa rheumatica.” This doc has a lab and he has found this protozoan infection in the blood of all his rheumatic patients and he believes it is the cause of RA. It is a bio-film, lipid-loving organism and is very resistant to antibiotics, as a result, Interestingly, this isn’t so far-fetched, as the core anti-microbials used by Brown (tetras and clindamycin) are anti-parasitic, too, and used in the treatment of protozoan infections, such as malaria and babesiosis. This doc has stated that once this bio-film loving protozoan is properly targeted (with a lipid-restrictive diet and appropriate anti-microbials) then any other infections holed up in the bio-film this organism creates are much easier to treat.

I have had the test run for this organism (expensive!) and the doc receives a digital picture back from the lab showing the protozoan in its bio-film under magnification. It’s pretty fascinating. This research is in its very early stages, but worth listening to this doc speaking on the topic (click on the “here” button to listen to the radio interview):

http://www.betterhealthguy.com/joomla/blog/243-dr-stephen-fry-on-fl1953

He posits that this could well be why Brown had such success with AP and why anti-malarials, like plaquenil and prescribed by rheumatologists, seem to work so well for rheumatic diseases.

What is so interesting to me about this doc’s work is that it seems to hit on providing answers to quite a few questions we all seem to have about a number of things, such as why many rheumatics seem to be gluten-intolerant but don’t have overt celiac disease (gluten-rich foods are high in arginine content, which seems to feed the bio-film this organism thrives in). Why candida suddenly becomes such a problem for anyone who starts using anti-parasitics, like flagyl or tinidazole (when protozoan starts dying and its protective bio-film is dismantled, all the animals in the zoo are released). Why clindamycin might be working so well for some folks when it’s not touted as a widely-used mycoplasma drug (though it is a powerful inhibitor of toxin synthesis, which is why its used in cases of toxic shock syndrome along with vancomycin). Why some folk do so well on vegan diets (no animal fats).

Thing is, it seems that abx don’t peel away the bio-film and may actually be causing these microbes to hide-out in these bio-films. Many AP docs and Lyme Literate MDs (LLMDs) are now realizing the importance of bio-film busting and using specific bio-film busters. Some go for the more powerful agents, like EDTA, while others take a more gentle approach with systemic enzymes (like serrapeptase, nattokinase, etc). The AP doc above, however, believes that a lipid-restrictive diet is the most powerful tool in the kit for busting bio-film.

So, why do some foods set off flares? Well, sugars feed candida, so that one is fairly simple. Other foods may be feeding or threatening to other organisms holed up in bio-film. Thing is, we all have a little bit of a lot of organisms in our guts and elsewhere in and on our bodies…they outnumber our own cells by 10:1. It seems that when immune function gets overwhelmed with one precipitating infectious event that things seem to roller-coaster downhill. So, a multi-pronged approach to healing rheumatic diseases seems to be quite important for many around here…in other words, not just taking our abx, but doing a bit of detective work to see what food triggers we may be experiencing, as well as working on gut healing and detoxing to prevent hypersensitivity reactions. We may never know which bugs are our worst offenders, but it seems that the less compromised a person immune-function is, the swifter the turn-around. So, doing what one can to heal the gut can go a long way to healing immune function.

Minocycline is the preferred abx of choice for most rheumatics, because it seems to have better lipid solubility. In other words, being in the class of “bacteriostatic” antibiotics, it penetrates cell walls (composed of lipids) more effectively than older tetracycline versions. This probably also means that it has some effect at breaking through those lipid-lovin’ bio-films. In the conventional literature, the American College of Rheumatology approved minocycline as a DMARD, too, so this might help in your quest to switch from doxy to mino. Some docs are afraid of mino, stating it can cause drug-induced lupus, but so can some of the conventionally-used rheumatologic drugs, like the biologics. With mino, it apparently only occurs in 1 in 10000 cases and it’s also believed safe enough for dermatologists to prescribe it to teens with acne every day:

http://www.aocd.org/skin/dermatologic_diseases/minocycline.html

“There are a few significant, but very rare side effects that develop in about 1 in 10:000 people. One is hypersensitivity lupus/hepatitis, which causes severe joint pains.”

Course, it’s ironic for me to talk, as I was one of those rare schmucks! 🙄

Let us know how it goes for you, Kali…we’ll all be here rooting for you!

[kali]

Such good info Maz – so my next question would be about diet then and supplements. I went back on my very strict anti-candida diet at the same time I took the diflucan. This diet emphasizes no sugar, no carbs but lots of fat for energy. I have once again been loading up on butter and foods higher in fat. Should I steer clear of so much fat in my diet? What about the occasional sweet potato? I actually am big into fasting and usually do so on my off abx days. I don’t have any other signs of candida like gas or bloating. It is more like you said earlier and that my immune system is suddenly waking up! The diflucan along with the doxy has really given my body something to think about!!! I still think all of this will die down. My biggest fear is that the doxy is just not going to be the same for me. But I know there are plenty of ways around that. I am determined to get my doc to switch me to mino.

Leaky gut could certainly be an issue – I have taken l-glutamine for over a year now in pill form. Are there other supps that are also good for leaky gut? Would the abx have anything to do with that issue? I am certainly on the straight and narrow with my diet. I will read the articles that you sent me… 😉 I’m getting ahead of myself here!

Thank you for this insight and all of your knowledge on this subject Maz.

[Maz]

@kali wrote:

I have once again been loading up on butter and foods higher in fat. Should I steer clear of so much fat in my diet? What about the occasional sweet potato?

Leaky gut could certainly be an issue – I have taken l-glutamine for over a year now in pill form. Are there other supps that are also good for leaky gut? Would the abx have anything to do with that issue? I am certainly on the straight and narrow with my diet. I will read the articles that you sent me… 😉 I’m getting ahead of myself here!

Hi Kali,

Just to confuse things further, there are two schools of thought on the fat issue, quite apart from the good fat/bad fat issue. Prof Garth Nicholson (http://www.immed.org) believes that lipid replacement is important in treating rheumatic diseases.

http://www.immed.org/publications/Nicolson_ElllithorpeJCFS_copy.pdf

On the other hand, physician-researchers, like Dr. F. in the link provided above, have found that in their clinical experience, those who get better faster are treating with anti-protozoals, are not supplementing with minerals, like calcium, magnesium or iron, and eating a lipid-restrictive diet. This, however, is research that is currently in clinical studies and hasn’t been published yet, so I think it’s something that needs to be discussed with a treating physician.

Perhaps the biggest question in my mind is, are all fats (good or bad) just plain bad in terms of promoting bio-film or are some fats okay? According to some, flaxseed oil may be one such fat that is okay, as well as things like fish oil that supply essential fatty acids. I think it probably is a similar question as the whole Vit D controversy as to what feeds the bugs. As I am fairly new to this newer protozoan research, my best guess is that everyone’s internal ecology is unique, what works for some may not work for others, and it might take some trial and error to figure out which path might work best for the individual. Clearly, some good fat is needed, not only for healthy liver function, but also hormone production, cell wall formation and mitochondrial function, etc.

Kali,I think you’ll find all the necessary info in the Leaky Gut article to get started on figuring out ways to heal the gut, but a really good ND or holistic doctor may be the way to go, if you need an individualized treatment plan. There are some terrific suggestions in the article and this includes reducing the pathogenic load in the gut and, interestingly, this AP doc also points to protozoans as being a common problem (suggesting that anti-parasitics, like flagyl, be used). However, he repeatedly discusses the problem of NSAIDs increasing gut permeability and finding alternative pain relief to help heal the gut. Candida is certainly a problem, because its hydra burrow deeply into the gut’s mucosa lining to also create permeability. Foods allergies seem to be a problem for those with leaky gut, as food shouldn’t be leaking out of the gut. When tiny food particles escape, of course the immune system then identifies these particles as foreign bodies.

What I think I find so interesting about this new protozoan research is that abx are typically blamed for candida overgrowth. However, this researcher believes the cause is related to bio-film that this unique protozoan builds around itself. Hence, why it’s very possible that once this inflammation-promoting protozoan is targeted with anti-microbials, such as the tetracyclines, anti-malarials, and anti-parasitics, the bio-films are compromised and candida, which has been an opportunistic hitch-hiker in the bio-film, is then released. This is when overt infections may begin to appear, which may not be as bad a thing as previously thought, because it can then be effectively treated – in other words, the candida was there all along, but protected by the bio-film.

Again, this is all such “new frontier” research that all this physician-researcher can base his claims upon at this point is the experience of the patients he is treating and his lab’s findings. So am really just sharing this info for your further personal researches and for anyone who might also be interested. It’s easy to be overwhelmed in the beginning with TMI (too much info), so just taking things a step at a time and seeing what works and eliminating what doesn’t seems to be the most sensible approach.

[kali]

Dear Maz,
You are such a jewel! You have compiled a novella here! This whole protozoan theory is so interesting. I’m thinking I’ll ask my doc to put me on flagyl too!

I am traveling for the next few days and hope that I can keep the pain at bay. I have my pain meds with me just in case.

I am so thankful for this board and all the wonderful people here.
Thanks again Maz and much healing to you too,
Kali

[Author]

Posts