Questions?

[charli]

I have been trying to use Minocin on and off for a year now. I seem to feel so much worse when I take it. I do not have an ap doc or a rheumatologist. I use my primary pc to rx it for me. The problem is I don’t know whether I feel so much worse due to the herx reaction or yeast. I know I have a problem with yeast but have never had tests to confirm this. Is it possible for a herx to be almost instant after taking the minocin or does it instantly send my already yeasty system overboard and thats what I’m feeling? Also, when you talk about a herx being a temporary worsening of symptoms, would that cause more tightening of my mouth? Do I push ahead and still try and get in 50mg of minocin on MWF and do my best on fighting the yeast? I know 50 mg is not alot for scleroderma and most weeks I don’t even get the 3 doses in. I don’t know what to do. I am always in pain which I think I am just getting used to but I cannot get used to my mouth symptoms, swelling nose and face stuff! 🙁

Thanks and God Bless,

Charli

[Maz]

@charli wrote:

I have been trying to use Minocin on and off for a year now. I seem to feel so much worse when I take it. I do not have an ap doc or a rheumatologist. I use my primary pc to rx it for me. The problem is I don’t know whether I feel so much worse due to the herx reaction or yeast. I know I have a problem with yeast but have never had tests to confirm this. Is it possible for a herx to be almost instant after taking the minocin or does it instantly send my already yeasty system overboard and thats what I’m feeling? Also, when you talk about a herx being a temporary worsening of symptoms, would that cause more tightening of my mouth? Do I push ahead and still try and get in 50mg of minocin on MWF and do my best on fighting the yeast? I know 50 mg is not alot for scleroderma and most weeks I don’t even get the 3 doses in. I don’t know what to do. I am always in pain which I think I am just getting used to but I cannot get used to my mouth symptoms, swelling nose and face stuff! 🙁

Hi Charli,

When you say you feel “worse almost immediately,” in what way do you feel worse? Are you thinking you might be experiencing an allergic reaction? What exactly are your symptoms when you take your mino and how quickly do these symptoms kick in?

Mouth tightening is a SD disease symptom and would be a sign of progression. In the early months of using AP, SD can be a bit of a freight train and it can take a while to slow down that progression before symptoms, like skin softening start to kick in.

For SD the 50mg MWF dose is rather small and most AP docs will take a more aggressive approach, using the Harvard Protocol (100mg mino twice daily) and sometimes also monthly IV clindamycin.

If yeast is a problem, docs will treat it at the same time as taking minocycline with a systemic, like Diflucan. In fact, some of the experienced AP docs will pulse in Diflucan as a matter of course with a person’s AP protocol. It’s quite a heavy drug and can be hard on the liver, so usually regular LFTs will be run, if taking it for a long period in higher doses (as some Lymies do with the Shardt Protocol, which is twice a day Diflucan for months at a time). An alternative to Diflucan that is sometimes used is a wash-thru, like Nizoral that can also be pulsed in.

Yeast can be really hard to eradicate when it sets in, without a some type of anti-fungal medication….do you also use a daily probiotic?

Charli, as you’re not working with an AP doc, would it help to get in touch with Dr. S. to ask him about your protocol? He is very kind about answering patients who are struggling and also physicians who are wanting to learn about Brown’s protocols. I’m just wondering if he might suggest that you switch out to a different tetracycline for a trial to see if you do better than on minocycline. Some people are sensitive to minocycline and do better on doxycycline or even tetracycline. If you’d like to check in with Dr. S, I’d be happy to send you his contact info.

[charli]

Maz-

Thank you for your reply. It is hard to describe how I feel, I would say that the reaction to the minocin is not instant but I start feeling worse the same day I take it. I have never broke out in a rash or have a feeling of my throat swelling or anything like that, I just think that I am very sensitive to it. I also know my mouth feels tighter and a more “drawn in” feeling sometimes when I take it. I was wondering since my mouth is such an issue with me, could it be killing bugs in this area or something??
I have also been able to get diflucan from my pc but I don’t think it works very well for me. Nystatin seems to help some but my doctor usually only rx’s a small bottle of it when he does give it to me. I know I need an aggressive approach to the yeast, maybe find something that works better for me than the diflucan, better diet, etc. I have been taking pearl probiotics but I usually don’t take more than 1 a day and I know that probably is not enough.

I did email Dr S. a long time ago and complained of these same symptoms and he told me to keep taking the minocin and not to worry about the yeast but its hard when you are trying to still work full time and that. I also do not have a very strong support system. Since I do not have a clear dx of scleroderma from a doctor, family and friends do not understand. I also don’t have the money to get a bunch of tests, supplements, etc all the time.

Its just so hard to know what to do. Maybe I should email Dr S again and see what he says about switching to the Doxy.

Maz, thank you so much for being here. I appreciate everyone on this board. Even though I’m not doing the greatest, everyone here gives me hope.

Thanks,

Charli

[Valsmum]

I have RA and when I take mino, I usually feel bad the same day too. I just thought I would tell you my experience. My herx reaction is basically more stiffness and soreness, and in the joints that are usually the most bothersome to me on a regular basis. I’m new to AP, but I just thought I’d chime in becasue I get a little stiffer as the day goes on after I take mino.
Take care!

[Maz]

@charli wrote:

I was wondering since my mouth is such an issue with me, could it be killing bugs in this area or something??

I have been taking pearl probiotics but I usually don’t take more than 1 a day and I know that probably is not enough.

Its just so hard to know what to do. Maybe I should email Dr S again and see what he says about switching to the Doxy.

Hi Charli,

Well, doesn’t sound like you have an allergy going on, not that I’m an expert or anything 😉 , but true allergy would in all likelihood show up with more serious consequences and an elevated esoinophil count. Like Valsmum mentioned, I also used to know it when I took my mino, as I always felt worse on the day on and better on the day off. Some folk are just the opposite and feel worse on their day off…I guess we’re all unique in this.

A lot of SDers find their don’t actually herx, so it might just be that you are a little more hypersensitive. Only a fellow patient suggestion, but perhaps you could ask Dr. S is if you could remain on your current mino dose, but add in doxy and gradually increase it so you’re basically taking the equivalent of the Harvard Protocol? They’re both tetracyclines, so you could still get the benefits of being on the higher dose (for greater immune modulation) and you might also find you’re less reactive to doxy than to mino so that you could increase your dose without too much hypersensitivity. You might also ask about the addition of a second abx, like azithromycin, just for an added boost?

Re: mouth tightening, it’s possible it’s a herx, but with SD (even seronegative SD), I think I’d personally be reluctant to just put it down to herxing and would be more inclined to find a way to treat the disease more aggressively. This is just my personal opinion, though.

As for probiotics, I actually take 4 or 5 times the recommended dosage on my PB8 bottle and haven’t experienced any ill effects from doing so…I also haven’t had any overt yeast issues in the 4 years I’ve been on aggressive Lyme protocols (though, in all fairness, I have been on Diflucan at intervals, which is known as the Shardt Protocol for Lyme). Probiotics can prevent yeast overgrowth, but really can’t turn it around once it sets in. Diet is pretty important in this context, too, cutting out all simple sugars.

Just an additional thought, Charli, but have you been tested for Lyme disease? Lymies, in general, do tend to be a bit more reactive and, quite often, wind up with diseases that ‘look’ to all intents and purposes like an AI disease. Lyme is known as the “second great imitator,” and, if there is any possibility that you do have Lyme, it could serve you well to get tested thru IGeneX, just to have a look for any significant antibody bands that could point to this possibility. Treatments for Lyme vary significantly from low dose AP and, without adequate treatment, progress could be hindered.

[Kim]

Hi Charli,

I was just speaking with another board friend who has symptoms almost identical to yours…..SD, incredible jaw pain, unbelievably hypersensitive to all meds, etc. After much pleading with her to be tested for Lyme (through Igenex) she came back with a big-time, I mean big-time, positive Lyme test. Although this now sets the course for her, it’s going to be tough because she’s in bad shape and the large doses of different antibiotics will be a challenge. She’s going to see an excellent LLMD who will have to tailor a program she can handle, but they are used to seeing people who are very sick.

If you’ve followed this board for very long you’ll know that there are so many SD people that also have Lyme and, in my case, I’m almost positive that the my Lyme infection induced the SD. Treating the Lyme has improved all my SD symptoms and I would not have gotten this well on Minocin alone. You really do need to know the enemy here because the Lyme treatment and AP treatment are very different.

Take care…..kim

[charli]

Maz and Kim, Thank you both. I have always wondered about Lyme. I have tested negative before but not through Igenex. I do not remember ever being bitten by a tick but sometimes I think it does fit my symptoms. I can remember not feeling well for years and about 6 years ago my neck started becoming stiff and would last a week or so at a time until it began to always hurt. Then about 5 years ago I had to get a total hysterectomy and about 6 months after that all hell broke loose. I have not been well since. I guess I am going to have to try and come up with the money and get tested. Is the initial cost around $200.00?

Do you guys think I should still try and take the minocin? When I first started taking it a year ago. I took 100mg daily for about two weeks and in that short period of time, I actually felt better. My energy, depression, and overall sense of well being was better. Then I started feeling bad again. Herx, yeast, sensitivity, whatever. Ever since then I cannot get myself to take it right. I took a short break and re-introdudced it at 50mg on MWF but sometimes I can’t even get that in. I also got Zithromax to take once a week and sometimes I feel better when I take it (it helps the swelling in my legs, is that weird?) I have also got Diflucan to take here and there and that can really make me feel like crap and doesn’t seem to help the yeast. I just can’t get myself on any kind of schedule with this stuff. Ugh! Its just a vicious cycle and in the mean time, I’m probably getting worse.

As far as the yeast, how do I get aggressive treatment for this? Do I need to get tested for this? Have any of you ever tried a candida cleanse? I know there are some things I can do. My diet is terrible. I pretty much eat whatever. I am going to work on this.

A BIG thank you again for listening! God Bless!

Charli

[Maz]

@charli wrote:

I have always wondered about Lyme. I have tested negative before but not through Igenex. I do not remember ever being bitten by a tick but sometimes I think it does fit my symptoms. I can remember not feeling well for years and about 6 years ago my neck started becoming stiff and would last a week or so at a time until it began to always hurt. Then about 5 years ago I had to get a total hysterectomy and about 6 months after that all hell broke loose. I have not been well since. I guess I am going to have to try and come up with the money and get tested. Is the initial cost around $200.00?

Do you guys think I should still try and take the minocin?

I also got Zithromax to take once a week and sometimes I feel better when I take it (it helps the swelling in my legs, is that weird?) I have also got Diflucan to take here and there and that can really make me feel like crap and doesn’t seem to help the yeast. I just can’t get myself on any kind of schedule with this stuff. Ugh! Its just a vicious cycle and in the mean time, I’m probably getting worse.

As far as the yeast, how do I get aggressive treatment for this? Do I need to get tested for this? Have any of you ever tried a candida cleanse? I know there are some things I can do. My diet is terrible. I pretty much eat whatever. I am going to work on this.

Hi Charli,

It’s a pretty common story…i.e. not ever seeing an offending tick or classic rash, but having a strange mix of symptoms for years and then some trauma (accident, injury, illness, shock/stressor) setting off the latent infection(s). Similar thing happened to me, though I had dug out a tick from my scalp about 12 years ago and had weird, unrelated symptoms for years…migraines, palps, hormonal imbalances, muscle twitches, tingling and pin-pricking sensations…it was really weird and I really thought it was just all hormone-related. Boy, was I wrong! When I got really sick over Labor Day weekend, we were in Cape Cod for a wedding and I thought the motel bed we were sleeping in had given me neck-ache…but then my daughter saw the rashes….one on my back and one around my waist, under my breast. I sort of thought to myself…well, if it’s Lyme, then it’s okay as it only takes a couple weeks of doxy to sort it out…I’ll be fine. The drive home was horrendous, however, and I couldn’t turn my neck to even look in the mirror and had to get my hubby (who was a little worse for wear after the wedding reception) to take over the wheel. The flu symptoms followed quickly and I felt wrecked when we got home and just slept and slept. I also didn’t get to the doctor to check for Lyme until a couple weeks later when the palindromic RA started…horrendous arthralgias and myalgias, appearing for 24 to 48 hours in one joint – totally debilitating and screaming pain – then disappearing, as if by magic and showing up in a new joint the following day. My GP at the time (now fired) tested me for Lyme and the tests came back equivocal. In spite of seeing my two bulls-eyes, he refused treatment and I didn’t know enough at the time to pursue it. My mother was then diagnosed with aggressive breast cancer and I was driving up and down to Canada…she was gone within 5 weeks of diagnosis and the shock crashed my immune system. Within 2 months, I had all out, very severe RA in all my joints, including my jaw, so that I couldn’t open my mouth to eat or chew. I was bascially unable to do anything for myself and needed help to dress, wash, dry my hair, squeeze toothpaste, turn in bed, lift the sheets, turn off light switches, etc. It was a nightmare. I finally managed to get 2 weeks of doxy out of my GP when I got a heavy chest infection (and then a further 2 weeks of doxy), which I now think was probably babesiosis, a coinfection of Lyme. The herx was montrous and I could do nothing by lie in bed, propped up by pillows in agony. Upon going back to my doc, he ran another Lyme test…again equivocal and he flat out said it couldn’t be Lyme, as I would have recovered with the doxy…WRONG again! I subsequently learned from my LLMD that I was herxing and the reaction I had was absolutely normal and showed I was responding to treatment…it’s just that the treatment wasn’t enough. He ran IGeneX labs on me and I showed up positive on two significant antibody bands for Lyme and the rest is history, really.

Standard tests for Lyme are missing 50% of cases of Lyme, as they are notoriously insensitive. They also exclude some very significant bands that were removed when they were creating the LymeRix vaccine for Lyme, as they didn’t want cross-reactivity, and were never returned to the test! The LymeRix vaccine was subsequently removed from the market as it was causing AI diseases in those were certain genetic HLA haplotyes. This speaks to the highly significant nature of these particular antibody bands (Band #s 31 and 34) as these particular borrelial proteins likely have a lot to do with triggering autoimmunity…or what ‘appears’ to be autoimmunity.

Yes, the basic western blot test, thru IGeneX is approx $200 and is essentially two tests in one…the IgM (present infection) and IgG (past infection) tests.

Yes, again, minocycline is the preferred abx for SD, due to its superior tissue penetration and wonderful immune-modulating properties. In any SD antibiotic protocol, whatever else may be added, mino should be the basis upon which any other abx are added for Lyme treatments. If mino can’t be tolerated, then doxy or tetracycline are alternatives.

Nope, don’t think it sounds weird, at all, that azithromycin is having some effect on your leg swelling. If you do have Lyme and coinfections, this makes all the sense in the world.

Question is, is the Diflucan making you feel crappy because of the yeast die-off or is it also treating underlying Lyme. The Shardt Protocol for Lyme consists of Diflucan twice daily. You can read about how this German doc (who had Lyme himself) found Diflucan to be efficacious in the treatment of Lyme:

http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=550313

So sorry, but not being a medical person, can’t tell you how aggressive you need to be for candida. That’s something a doctor who treats candida could help you unravel. There are natural remedies you could research, however, for the treatment of candida, such as grapefruit seed extract and olive leaf extract. There is also a parasite cleanse, called Humaworm, that includes herbs for the treatment of candida.

Yes, diet is pretty important for many here…with 70% of immune function residing in the gut and quite a few SD patients find they do have gluten intolerance. Some also find dairy to be a problem. Pretty much eliminating foods that contain no nutritional value, too, like simple sugars is really just common sense, as these just feed the microbes and serve no purpose in the body.

[charli]

Hi Maz…I haven’t been here for awhile so I thought I would check in..Nothing much has changed with me…still do not have a dx of Scleroderma..I still try the antibotics once in awhile but cannot get myself on any real schedule with them..With no real guidence from a doctor, I find myself constantly questioning how I feel when taking them..When I take the minocin I get bad headaches that make me question my blood pressure…so I start..stop..start..question yeast…stop..I am sure I should not do this but its so hard to know what to do..I took some Zithromax last week and think I stirred up something..my neck and shoulders have been killing me..cannot hardly move..fatigue..missed two days of work…all this just sucks..I’m sure I still have yeast too..but I cannot even take the probiotics right..swear I am sensitive to them..I still have not been tested for lyme..have been reading over on the lyme board some and think I am going to get tested..which is kinda the reason I wanted to check in with you..if i get the lyme test, and test positive..are there any llmd’s in Ohio yet? Anyways..Maz…I know I probably sound like a scatter brain…still the same stuff with me and do not follow though with anything right…not dealing with diet, yeast..anything .. so tired..still trying to work full time..feeling so depressed lately. I appreciate you listening, I know you are not a doctor but I am pretty sure you know more than them anyway! How is Kim doing..do you ever hear from her..what about Carrie..does she still check in here? Well take care Maz..I hope all is well with you! Hope everyone here is getting better!

Charlie

[Maz]

@charli wrote:

..are there any llmd’s in Ohio yet? Anyways..Maz…I know I probably sound like a scatter brain…still the same stuff with me and do not follow though with anything right…not dealing with diet, yeast..anything .. so tired..still trying to work full time..feeling so depressed lately. I appreciate you listening, I know you are not a doctor but I am pretty sure you know more than them anyway! How is Kim doing..do you ever hear from her..what about Carrie..does she still check in here?

Hi Charli,

Really nice to see you again, but so sorry to hear you’re still struggling to get on a schedule. I think the thing is that with the possibility of scleroderma, you don’t want to be taking any chances by not being as compliant as you possibly can with your AP. Scleroderma can be pretty hard to diagnose in the early years for some folk, but if there is the slightest chance of having the disease, then the later one waits to treat, the more challenging it can be to slow down progression and turn it around.

Lyme can mimic and trigger everything under the sun and there are a good number of SDers who frequent here who have the Lyme mix of infections. As you seem to be getting a good response from the different classes of abx you’re taking, this could well indicate that a combination protocol would be ideal for you, so a LLMD (Lyme Literate MD) would be an excellent choice of doctor, as these docs usually hit Lyme with multiple abx at once. Unfortunately, the aside to this is that there will be herxing to deal with and it’s just one of those things we all have to work through and learn how to best detox while this is happening. The more engaged you can get in the process, the better and there are lots of folk here who can offer peer support along the way. 🙂 I’m actually going to be away for the better part of this week from Wed, but there will be lots of others here who can chime in if needed. Nancy and Parisa have a lot of Lyme knowledge to share.

As for testing, most of the experienced LLMDs will use testing as a nice confirmation of what they have clinically diagnosed, if positive, but a negative result won’t exclude the possibility of Lyme, because some of the sickest,most immune-compromised folk won’t produce enough antibody to test, anyway. This is why Lyme and its coinfections must be a clinical diagnosis, based on presentation of disease signs/symptoms, patient history, and supportive labs. An IGeneX test could support a diagnosis and make it easier to make the decision to see a LLMD, because if Lyme is suspected, then the best doc to see is an LLMD…and the more experienced, the better, really. 😉

Very sorry to report that we haven’t had any new LLMD listings for Ohio, but there was a new one for Zionsville, IN, if that helps? I can PM this info to you (just click where it will say (1 new message) above, to retrieve your message).

Our dear Kim had to retire from volunteering for personal reasons, but if you needed to contact her, you could probably get in touch by sending her a PM. Carrie checks in now and again…you can read her latest postings here:

viewtopic.php?f=1&t=6373&hilit=carries

Thanks so much for your kind wishes, Charli…doing really well at the moment with only minor bumps in the road occasionally. 🙂

Do hope something above will be of help, Charli. We’ll all be here to support you, if you need it.

[charli]

Maz, Thank you so much!!! I googled the doctor you give me in Indiana and it is only about an hour and a half from me!! Maybe now I can get with a plan.. gives me hope..will be calling them later today!! Will keep in touch!

Thank you so much!! God Bless!

Charli

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