Doing Everything Possible (thanks for the quote Kim) But Am I Still Missing Something?

[Mumof3]

Hi,

I am noticing that every month (oddly around the 19th), I have a flare that lasts 4 or 5 days. During the flare, my swallowing becomes an issue (which is scary). I have excess saliva. This month my voice has changed. I sound very hoarse when I talk (I have no idea what this could be). I get a bit of stiffness and muscle cramps. The worst part of it is the muscle pain in my torso. I feel like I've done a thousand sit-ups. I also have a lot of pain around my ribcage. My chest also hurts and I get some palpitations. To describe it, I would say that my whole torso area/chest/lungs feels so inflamed to the point where it hurts to breathe. I'm not one to take drugs for anything but I'm finding I need to take ibuprofen. Then after about 4 or 5 days I am fine again.

The strange thing is when I don't have the flare, I really feel like I am improving. I still have some issues but I have much less fatigue and I feel quite well most days. Joint pain is gone. Heartburn is gone. Bottoms of feet don't hurt any more. Whereas before, I just felt lousy every single day. I realize it is not an overnight cure and a long process. But I just need to understand……is this how AP works? Some good days and still some flares? Should I still be getting flares like this with this intensity? Don't get me wrong, I am so grateful that I am still so well. But the flares right now are very intense and I get scared and wondered if this is normal?

So here's what I am doing:

1) Diet – avoiding all food allergies;
2) Hormones – addressing all imbalances (thyroid, testosterone etc.);
3) SD/Lyme – Mino./clindy I.V's and treating for suspected babesia (using Flagyl, Zithro and soon to be starting Mepron). Will also repeat Lyme tests in New Year and change protocol accordingly;
4) Yeast – upped probiotics and taking Diflucan.
5) Exercise
6) Supplements – on loads (especially enzymes, probiotics) and addressing mineral imbalances.
7) Removed all mercury fillings.
8) Heavy metal toxicity being addressed.

Here's what I need to work on:
1) Strep titre – still high. Will be upping zithro to daily to knock this down;
2) Stress – have lots! Needs work!
3) Getting back into regular saunas.
4) Balancing pH (and definitely eating more veggies)

So I guess my questions are:
1) Is this just how AP works? Is it normal to still get these intense flares?
2) Could it be herxing?
3) Do I entertain the thought of being on other meds in the short term? I know the first couple of years are the most crucial in terms of organ damage. Should I be adding Plaquenil or something else right now to get over the hump?
4) Am I missing something that needs to be addressed?

Sorry for the long winded post. But I am wracking my brain trying to figure out what else I could be doing. I am very proactive and determined and doing whatever it takes so I just want to make sure I haven't missed something along the way. Thank you kindly for your time. I am very grateful for your valued opinions!

[nspiker]

Hi Mumof3,

I love your pic!  Sounds like we are the same protocol track, even though our diagnosis is different.  Soon, I will be adding mepron too. 

Mino./clindy I.V's and treating for suspected babesia (using Flagyl, Zithro and soon to be starting Mepron).

I have read that lyme cycles, and that symptoms can be exacerbated on a monthly basis.   As far as the muscle/torso pain, I have found that the places  that were sore or achey before, are more pronounced with treatment.  For me , it feels like the drugs are hitting the bug, and causing a reaction (herx).  That said, I have only been on the mino/zith/tini combo for less than a week, and that is how I've felt.

nancy

PS:  Are you taking diflucan daily, and how much?  I know it is hard on the liver, and have been hesitant to take so much.  I am now starting nystatin, three times a day, since it is easier on the liver.

[Maz]

[user=869]Mumof3[/user] wrote:

I am noticing that every month (oddly around the 19th), I have a flare that lasts 4 or 5 days.

So I guess my questions are:
1) Is this just how AP works? Is it normal to still get these intense flares?
2) Could it be herxing?
3) Do I entertain the thought of being on other meds in the short term? I know the first couple of years are the most crucial in terms of organ damage. Should I be adding Plaquenil or something else right now to get over the hump?
4) Am I missing something that needs to be addressed?

Hi Mum,

I'd second Nancy's comment about the cyclical herxing with Lyme. My LLMD told me that monthly flares are common amongst Lymies and the theory is that the organisms are more susceptible at certain points in their life cycles. To be honest, I haven't yet been able to wrap my head around how this works, because I can't make any practical sense from the theory being that all the spirochetes are moving through their life cycles at the same pace and susceptible at the same time! 😕 Unless, of course, this has more to do with bio-film communities being more susceptible at certain times.

What does make more sense to me is that women, especially, move through hormone cycles and, during those dips in hormones, some natural immune suppression is lost. It makes more sense to me that it's during these times that the organisms become more susceptible…and/or we are just feeling it more without the steroidal hormone support. So, is it herxing? Well, in this context, it might be akin to post-partum flares….and, while on antibiotics, there is die-off, which equals herxing.

Just out of interest, what dosing regimen are you on for the flagyl and zith? It might be that a dosage adjustment is something that needs some considering. The thing about LLMDs is that they tend to “hit 'em hard.” Canada is in dire need of LLMDs – have you considered getting a second opinion from an LLMD down here in the US?  

Another consideration is that, while on antibiotic therapy, it's not that flares won't continue to occur. I've personally found that they do and will continue for some time. They should, however, over time, be decreasing in intensity and duration, as well as frequency (longer periods of being flare-free). It's the longterm trend that is important in this context.

Seasons greetings, Mum, and hope you manage to get to the bottom of this and get some relief to enjoy your holidays! 

Peace, Maz 

[Conniel7777]

Maz,

 

 You were a doctor and a research scientist in a former life.

I just thought I would tell you that in case you didn't already know. 😉

 

Connie

[Mumof3]

Hi Nancy,

Thanks for the response. I have heard that lyme cycles and you can feel lousy every month which is pretty much what is happening with me. In between those times I am fine.

I take 100 mg of Diflucan daily. I have also heard that it is hard on the liver. I get my liver enzymes checked every 3 weeks.

[Mumof3]

Hi Maz,

Thanks for your response. Yes I'm not sure if its the Lyme cyclical thing or hormones that are affecting me. Whatever it is I feel lousy each month for a few days. Then I bounce back and feel almost normal.

The dose I am on is 200 mg of mino daily, clindy IVs (1,200 mg weekly and 5 days in a row every 6 weeks), 250 mg of Flagyl three times a week, 250 mg of zithromax once a week (but I will be taking it daily shortly). I will also be taking Mepron (1 teaspoon twice daily) starting next week.

My doctor is pretty much treating me for Lyme (or suspected Babesia). Are the doses even higher than this for Lyme? I can't really afford to go to a doctor in the States right now but I have a lot of faith in her and know she is willing to experiment. Do you have any suggestions at all?

Thanks again for your help. Hope you have a great Christmas!

[JBJBJB]

[user=1441]Conniel7777[/user] wrote:

Maz,

 

 You were a doctor and a research scientist in a former life.

I just thought I would tell you that in case you didn't already know. 😉

 

Connie

Ha ha ha…. Connie, we all thought the same thing. If you believe there is a past life, for Maz, she must have been:

1. a doctor

2. a medical research scientist

3. a scientific writer

4. a pastor

5. a psychological counselor

6. the mother of Ann Landers

 

Love ya, Maz!!!

:roll-laugh::roll-laugh::roll-laugh:

……….

[Randy]

Hi Mum,

Just a couple of thoughts.

You can certainly feel bad (herx) regularly as a result of your clindy IV's – at least I do.  (And I typically don't have fluctuating monthly women hormones….yes, us guys have it sooooo easy!….)

Second, the clindy IV's can make you susceptible to (leg) cramps. I regularly have intense and incredibly painful calf and hamstring (those are the worst!) cramps during the week of my IV's, and a couple of days following.  I must take a 1200mg calcium/400mgmagnessium combo mid day away from the mino to keep the cramps from devastating me. (yes, Dr. F. wants me to continue taking the mino during the IV's)

Dr. F. told me that DMARDS slow down AP.  Also, while I was on Plaquenel I had swallowing issues, my appetite was gone, and I lost almost 30 lbs.  When I stopped the Plaquenel the swallowing issues went away, my appetite returned and I started gaining weight again.  Coincidence?

In general, I would say you are making good progress with AP – keep it up!

Randy

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[nspiker]

Mumof3 wrote

The dose I am on is 200 mg of mino daily, clindy IVs (1,200 mg weekly and 5 days in a row every 6 weeks), 250 mg of Flagyl three times a week, 250 mg of zithromax once a week (but I will be taking it daily shortly). I will also be taking Mepron (1 teaspoon twice daily) starting next week.

To compare, I also have suspected lyme/babesia.  Currently taking 600 mg. Zithromax, 1000 mg. tindamax (flagyl), 200 mg. Minocin all daily; and Clindamycin IV's 1200 mg. for seven days, every three weeks.

nancy

[Lynne G.SD]

Hey JBJB;
        You sure hit the nail on the head.Maz's next life will be as a guardian angel

[JBJBJB]

[user=31]Lynne G./SD[/user] wrote:

Hey JBJB;
        You sure hit the nail on the head.Maz's next life will be as a guardian angel

Maz is God sent to all of us, Lynne.

JB

[Kim]

[user=266]JBJBJB[/user] wrote:

[user=31]Lynne G./SD[/user] wrote:

Hey JBJB;
        You sure hit the nail on the head.Maz's next life will be as a guardian angel

Maz is God sent to all of us, Lynne.

JB

Well, when the RBF movie is made I think Meryl Streep should play her. 😉

[Mumof3]

Thanks everyone for the responses. I really appreciate it. It is good to know that it is still normal to feel crappy whether it be herxing or flares. I will tough it out and keep plugging away and do whatever it takes!

[Maz]

[user=869]Mumof3[/user] wrote:

The dose I am on is 200 mg of mino daily, clindy IVs (1,200 mg weekly and 5 days in a row every 6 weeks), 250 mg of Flagyl three times a week, 250 mg of zithromax once a week (but I will be taking it daily shortly). I will also be taking Mepron (1 teaspoon twice daily) starting next week.

My doctor is pretty much treating me for Lyme (or suspected Babesia). Are the doses even higher than this for Lyme? I can't really afford to go to a doctor in the States right now but I have a lot of faith in her and know she is willing to experiment. Do you have any suggestions at all?

Hi Mum,

This is quite the combination – mino, flagyl, zith and mepron in addition to clindy IVs! All are certainly used in the treatment of Lyme, but dosings and combinations may vary. 

For instance, an LLMD might prescribe 2 or 3 orals in high daily doses, rather than intermittant pulsing with this large combination all at once. For instance, they would not be likely to use Flagyl 3 times a week, but daily…same for zith (though you mentioned you are soon going to be taking it daily).

The most my LLMD has had me on at once is tetracycline (750mg bid), biaxin (500mg bid), plaquenil and weekly bicillin shots (to bypass gut). Flagyl is very hard on the gut and with everything you are taking, no doubt your doc will be wanting to watch your liver enzymes quite closely. 😉

All this said, there are LLMDs who take a very aggressive approach and I have heard of people on similar combinations. Would just be very careful, though, to watch gut health. An unfortunate aside to the heavy dosings of combination like this is that drug side-effects can be as difficult to differentiate from actual disease symptoms and medication burn-out can occur if treatment is too aggressive. Some Lyme patients find they have to go on antibiotics holidays…so there is a fine balance to keep. If your doc reckons it's okay in your case and you're being regularly monitored with at least monthly labs then this is a plus. 🙂

Would recommend going on to LymeNet to speak with other Lymies about their experienced of this type of combination. You can also do searches there on the experiences people have had of various antibiotics.

All the best, Mum, and have a great Christmas!

Peace, Maz

PS Connie, JB, Lynne, Kim – well, my face is very red now! :blush: You girls are too funny…but thanks for the kind thoughts.

 

[nspiker]

Lynne wrote:

You sure hit the nail on the head.Maz's next life will be as a guardian angel

I think she's an angel to us all in this life…..
xo, nancy

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