Upcoming MD appointment

[m.]

Hi all,

I've got a follow-up appt. with my MD in a few weeks. I'm currently on 50 mg of Doxy, MWF.

I know at the appointment, my MD is going to want to discuss how I feel and whether we should increase the dosage or not to 100 mg MWF.

I've been on the Doxy since the beginning of July of this year, I tested positive to M. hominis by antibody and PCR via TARCI.

Since beginning the Doxy, I've had some good days where I've been nearly pain free. Without apparent rhyme or reason (well, there may be, but I haven't seen the pattern), I will have some days where my knees or elbows will hurt quite a lot.

I guess part of what I'm thinking is, well if 50 mg is effective, I'd rather stick with it, for now. But, how do I know if it's effective, since the disease normally waxes and wanes?

Opinions welcome.

Michelle

[linda]

I'm definitely not the best person to answer your question since our cases are very different. You've only recently been diagnosed while I was sick for over 20 yrs before I heard about AP. But I can tell you that I also started to feel pretty good after a few months, so my doctor and I decided to increase my dosage form M-Th to M-W-F. It was a big mistake; after about 2 weeks I got a huge herx reaction and stomach troubles followed. I had to stop the antibiotics because of the stomach problems, but had I been able to continue I would've gone back to the original dose.

Sometimes people who have been sick for a long time have a tougher time with herxes and flares, so what happened with me probably would not be the same with you. We need some more information from people who have more experience than I do.

[lynnie_sydney]

m. – you've been on this protocol for a little over 2 months. It seems to be working just fine. Given this, why change now? More is not always better in AP – in fact often the opposite. In any event, give it some time. In a new protocol that seems to be eliciting a beneficial response and that doesnt cause bad herxing, the 6 month mark would be the earliest I'd consider a change.Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[orchid]

M –

Did you start on 50mg MWF from day one? I've yet to start and early diagnosed like you (mild) so I had planned on starting low and slow and building up. I always thought the “goal” was to get up to 100mg 2x/day MWF but I didn't realize that if this “lower” dose was working for some, that you could stay there.

Sorry, I can't help you YET!

Linda – what are you currently on? If the increase made you sick, couldn't you go back on it eventually? How does that work?

M and I are sort of in the same boat so her posts have been helping me a lot.

[m.]

Thanks for the responses.

Good idea Lynnie. Maybe I'll set up a date in the future, and review how I'm doing then.

Yes, Orchid, I started out at 50 mg MWF.

I could try to take better notes. I was in quite a bit of pain yesterday, but today? I felt quite good when I woke up. I think the ups and downs have caught me by surprise.

I don't take very good notes either, so it's more difficult to see any sort of pattern.

I don't take anything for the pain, and I've been trying Wobenzyme for inflammation. Trying to keep up with basic supplements and good eating habits too. Exercise seems to help boost my mood.

Thank you again,

Michelle

[Maz]

[user=515]orchid[/user] wrote:

I've yet to start and early diagnosed like you (mild) so I had planned on starting low and slow and building up. I always thought the “goal” was to get up to 100mg 2x/day MWF but I didn't realize that if this “lower” dose was working for some, that you could stay there.

Hi Orchid,

The purpose of building up slowly is to figure out which dose is the ideal dose for the individual. In other words, when you get to a dose that elicits herxing that is just tolerable, then you'd stop there. To increase the dose would only increase the degree of herxing and, while some herxing is a good sign that the protocol is working, you wouldn't want to push on to a higher dose that may be intolerable. I've been there with heavy Lyme dosing for a year and it isn't pretty. :crying:

In my own case, mino 100mg twice a day on MWF has worked for me. It produces tolerable herxing and I am seeing gradual improvements. For another person, they may reach 50mg once a day on MWF and find that is their level. The idea is to kill pathogens but not the patient, as is often repeated here, because everyone's body mass, pain reaction, tissue hypersensitivity levels, etc are quite unique.  

The ideal is to work out a beginning dosing plan with your doctor. If the doc isn't AP Literate, this can be harder to gauge, but generally speaking the idea is to go low and slow until one's own ideal dose is acheived.

Some who have been unwell for years and are on other DMARDs or a biologic, for instance, may be started out on mino 100mg twice a day, daily, because they will be needing the immunomodulatory effects if their plan is to wean off the other drugs. For another person, who may have had explosive onset RA, their tissues may already be hypersensitive and, as Michele has shared, she was unable to tolerate even miniscule amounts of mino and had to work down from the dose her AP doc prescribed.

So, as you will understand, there is a wide difference between patient responses and a no one-size-fits-all.

Peace, Maz   

[orchid]

Thanks – Maz,

I just don't want to make a mistake. I'm being VERY careful if you can tell. Making myself loony. 😛 I'm pretty small so I don't want to start too high and end up in too much pain.

I guess I'm trying to figure out what tolerable herxing is…does that mean slightly increased pain in your joints? Also – if I take it on a Monday and a Friday, when can I expect to herx? It seem like John McDonald herxed exactly 48 hours after he took the meds. On average, does this seem to be what happens – and how long should I expect to herx? So, some days are good and some are bad?

I guess I'm just confused about the whole herxing thing, which is why I haven't started meds yet. I've read herxing is good, but what if I take the meds and don't herx at all? Does that mean it's not working? And if I do herx, how long will this last, does it eventually stop — and when do you know when to increase?

I'm so mild now, I guess I just don't know how to gauge my progress.

Confused…:headbang: !!!!

[John McDonald]

Michelle,

My take is a little different. I always liked to decrease my dose just before I saw my doc (in the early days) so I could honestly say “Doc, it is working, I feel great”. Too many docs get uncomfortable if you get worse before you get better. They worry that they are doing something wrong no matter what you tell them. So I thought of it as doctor management. I never lied. I just made my herx and hence my story comfortable for doc. What doc would want to take you off if you say “This is great, I am responding”.

-john (runs with scissors too).;)

[Maz]

[user=515]orchid[/user] wrote:

I'm so mild now, I guess I just don't know how to gauge my progress.

Hi Orchid,

I understand your confusion, but try not to make yourself looney over this…it truly is a different experience for everyone. The only way you know how you're going to react is to begin the protocol and figure it out from there.

It's really not a fair comparison to share my experience of Lyme herxing, as it was a completely different protocol and massive herxing is expected and even looked for by Lyme docs…the more herxing the better! :sick:

However, I can share my experience of beginning AP (minocycline). My initial intent was to go as quickly as possible to the 100mg twice a day (Harvard) protocol, as I wanted to get the palliative relief that mino promised as quickly as possible. So, had a week's washout from my Lyme protocol and then began on 100mg per day the first week (felt pretty good with fewer symptoms) and then upped to 100mg twice a day the second week. BIG MISTAKE! My herx was pretty bad (crashing fatigue, painful joints, increased swelling, general malaise, etc) and it felt like I had battery acid flowing through my veins. Ugh. But, you know, I learned my lesson well and it soon became clear that having been on a year of heavy abx for Lyme, my hypersensitivity levels had ramped up and tissue reactivity pretty extreme. So, I lowered my dose to 100mg (bid) MWF and the following week I began to feel better quite quickly. Of course, the herxing continued, but it was much more bearable and I just stuck with this dose.

In my case, I felt worse on mino days – within hours of taking a dose – and better on my off days. This continued for about 6 months until the herxing lessened to such a degree that my on and off days melded into one. Now I only herx briefly, once or twice a month, usually when hormones take a dip and are running on low.

For others who pulse, they report feeling better on their mino days and worse on their off days. So, this is different for everyone.

Degree of herxing and how it manifests varies for everyone, too…some might breeze through and experience no discernable herxing. For others, it can result in what feels like a flare in symptoms, which can be quite unnerving, questioning whether the therapy is working at all. Herxing might manifest in increased joint pain, sore throats, raised glands, rashes, gut issues, low grade fever, headaches, light sensitivity, night sweats…really the list is endless. It can be impossible to tell what is a transient herx and what is a flare with the myriad of symptoms that may occur and often it's only possible to say it was a herx, in retrospect. For this reason, if you experience any symptom that is concerning, to report it to your doc. In general, herxes tend to be shorter in duration than a flare and, after it's over, little improvements gradually begin to become more noticeable. In the beginning, though, it can be almost impossible to distinguish herx from flare and, for some (usually more severe cases), worsening occurs for several months or more until improvements start to be noticed.

So, what I'm really trying to say is you won't know how you will respond till you begin the protocol. You just have to plunge in and manage your symptoms as you go. You are so early and so mild in your disease, your herxing experience shouldn't be as bad as most.

Also, it's not really about making mistakes…because it's easy enough to adjust things as you go when starting out low and slow….and “tolerable herxing” is really what is comfortable for you, personally, to handle. I have a pretty high pain threshold, so I have to be aware of not going overboard with herxing, as this can increase inflammation and prevent the abx from working. For others, their pain threshold might be much lower or they may need to be able to function to run around after kids, look after an elderly parent, or get out to work. So, the long and the short of it is that you will know what you can handle when the time comes.

So, while there are no hard and fast rules, generally speaking, expect to herx and that this herxing will vary from day to day and month to month, until you reach a point where herxing starts to become imperceptible. Expect your bloodmarkers to worsen in the early months, but that these should also improve as you start to turn the corner. If you don't herx, then consider yourself one of the fortunate ones!

You'll know when to lower or increase your pulsed dose when you begin herxing. If it's a doozy, you just back off for a while or stay at that low dose until things stabilize. If you don't herx, then this doesn't mean it's not working. It may just mean you can raise the dose.

Really, the only way to figure this out for yourself is to start and see how you go. Taking minocycline is no biggy…teenagers with acne do it every day at the 100mg twice a day dose. 😉 This is the safest treatment out there for rheumatic disease…thank goodness.

Peace, Maz

 

[Maz]

PS All of the above is just to give you an idea…really, any unusual symptoms or dosing adjustments should be discussed with your physician. 😉

[orchid]

Sorry – M,

Didn't mean to hijack your thread. :blush: I hope some of the other responses are able to help you with your own issue. We really do have a lot of similarities so I've been learning A LOT from watching your progress.

Maz –

You made it so much clearer for me and hopefully M as well. I heard about herxing but you really explained it well. I thought I'd go on mino, end up having this horribly severe herx that last 2 months straight or something, freaking out and well, you know!! Now I get it.

Thanks for explaining it clearly for me. I'm still debating about mycplasma testing. I just want to get tested, not spend a lot on it (hoping inusrance would cover some) and start mino. Ugh. Wish my rheumy was an AP doc, too!

[orchid]

Maz –

The problem is I'm not really familiar with flares so it's going to be difficult for me to discern a herx from a flare.

Also — you mentioned I could possible breeze through with no discernable herx. Isn't that bad – NOT to herx at all? I would think that would mean it's not working since they talk about herxing in the book and how it means it's killing the bugs or whatever.

That is the confusing part, I guess. To herx or not herx and what does that mean – that is the question!!!!!

Thanks :roll-laugh:

M – I sent you a private message.

[Maz]

[user=515]orchid[/user] wrote:

The problem is I'm not really familiar with flares so it's going to be difficult for me to discern a herx from a flare.

Also — you mentioned I could possible breeze through with no discernable herx. Isn't that bad – NOT to herx at all? I would think that would mean it's not working since they talk about herxing in the book and how it means it's killing the bugs or whatever.

Hi Orchid….I had to smile when you asked this question, because for pretty much everyone on AP (with mild or severe disease), it's very difficult to discern a herx from a flare, especially in the beginning. In fact, I found myself (and still do) question if I'm having a herx or a flare on my bad days. I found I could only tell the difference after the event, because it tended to be shorter lived than a flare and I felt slightly improved when it faded. Flares tend to be longer in duration and are harbingers of worsening. It really is a treatment that takes a lot of courage and trust on our parts that it's going to work and to push through the rough days and stick with it. it might be that after a few months, you will look back and the lightbulb will go on and you'll think to yourself, “Ahhh…so that was herxing!” You'll know, because you are improving.

I don't know if it will be the case for you that you breeze through. It might be or it might not be the case. For people with very mild, early disease, herxing can be relatively mild….or it can make you wonder why you started AP when your symptoms were mild to start with! In other words, you might wonder, “Why am I putting myself through this when I was getting by okay before AP?” I gather from your posts, though, that you wouldn't be here and questioning starting AP, if you weren't concerned about getting on top of things early to avoid later worsening?

Really, no one can predict the course of these diseases. Some people with mild disease know something is going on for months, but may go into remission for 5 years and then have it return with avengence. For others, it creeps up like a thief in the night until it can't be denied that something is going on and needs addressing. For others it can come on swiftly and aggressively.  

All I can say is that if your doc has done a thorough assessment and thinks you are a candidate for AP (and you agree with your diagnosis), then it is best to start early, because the earlier one starts, the better the prognosis, according to Dr Brown's findings. If this is the case, you truly are in a very fortunate position! Some people have been sick for many years on some very hard drugs and when they do eventually find AP, it can be a much bigger challenge to turn things around. People with severe disease do turn things around, too, but it generally takes longer, they might need IVs, need adjunct therapies for pain while balancing powerful pain meds, gut issues, special diets, etc.

I have spoken to a few people who say they haven't herxed to their knowledge. One lady was put on mino 100mg twice a day and had been unwell with RA for many years. She had been on a number of very heavy pain meds and DMARDs and they weren't doing much good. Basically, she felt pretty crappy all the time. When she started mino, it was just one more med to add to her daily routine. She told me by phone that she couldn't tell if she'd herxed or not…however, she confirmed that after several months she no longer had morning stiffness, her depression had lifted and her pain levels were greatly decreased. So, she may well have herxed in the beginning, but felt so rough anyway that she couldn't tell the difference. Or, it might just be that her other meds were palliating things when she began AP enough to keep the herx to imperceptible levels. Also, steady, daily dosing tends to be a bit more immune-modulatory, unlike pulsing, the intent of which is to keep blood serum levels of mino rising and falling for the purpose of less immune-modulation and more, it is believed, more pathogen killing by the immune system.

Really, in truth, all anyone can do is provide possible scenarios for what may occur. There is no hard and fast rule for how anyone will do when they begin AP. This is a really common question, Orchid, and it's good that you brought it up, as no doubt it's on everyone's mind – mine included – when they begin AP and have read the material.

For people who have more moderate or severe disease, there really is no choice…we have to do something to help our disease and the choice is between heavier drugs or AP. So we plunge in and take things from there. For someone with more mild disease or possibly just in the beginning stages, I can see why you'd be ambivalent about starting. All I can say to really help you is that, once you've read the material and understand it, you then have to make a personal choice as to what to do…to wait and see if things worsen on their own or to just dive in and avert things early.

Hope this helps a bit, Orchid. As you know, we're just patients like you and really only have our own experiences to go by or what we have gleaned from our own research and listening to others. I understand your predicament and would love to just be wise enough or smart enough to predict how things will go for you, but alas it's really only possible to give possible scenarios, because everyone is so unique and different in their responses to AP. 😉 All I can tell you with any certainty is that Dr Brown felt it was optimal in rhematic disease to catch things early and treat early.

All the best in your decision-making!

Peace, Maz

PS Really, same goes for whether you choose to get tested or not. Some people do and some people don't bother….some docs require it and some don't. It's expensive, like Lyme testing, so it's really whether you can afford it and want something in writing.

[m.]

Maz, thank you for taking the time to type out your last reply to Orchid. I got a lot out of your post.

Michelle

[Maz]

Thanks for your thanks, Michelle! 😉 I felt like I was running around in circles in my head while writing that, so glad it made some kind of sense. Much appreciated.

Peace, Maz

[Author]

Posts