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[flossymaud]

hi, could someone give me some advice, i was diagnosed nearly 3yrs ago withMCTD , i have been reading up on the antibiotic therapy,and went to my rheumy to see if they were happy to prescribe the minocin for me. Even though they dont do antibiotic therapy he agreed for me to try it, but because they dont know anything about it ive had to tell them what dose to take and i asked for 100mg x3 weekly, as that was my understanding from the book. All the threads ive read on here seem to be taking higher doses!!! am i doing it correctly. HELP IM CONFUSED!!

JULIEX

[Maz]

@flossymaud wrote:

hi, could someone give me some advice, i was diagnosed nearly 3yrs ago withMCTD , i have been reading up on the antibiotic therapy,and went to my rheumy to see if they were happy to prescribe the minocin for me. Even though they dont do antibiotic therapy he agreed for me to try it, but because they dont know anything about it ive had to tell them what dose to take and i asked for 100mg x3 weekly, as that was my understanding from the book. All the threads ive read on here seem to be taking higher doses!!! am i doing it correctly. HELP IM CONFUSED!!

Hi Julie,

I know all the different abx protocols that people are on here can be confusing at first. When just starting out, the dose you are beginning on is just fine. 🙂 Dr.Brown did start his patients out “low and slow” on AP (antibiotic protocols), because he found that those with more inflammation tended to herx badly. Starting on a low dose and seeing how you respond is a good way to go, at first. Many people do very well on this dose, but important to remain aware that it could be a good 6 to 8 months before you notice any significant positive steps forward in progress. If by that time, you haven’t improved, at all, it’s probably then time to go back to the drawing board and figure out what dose might suit you better (e.g. I did really well on mino 100mg taken twice daily on MWF and others do better on daily dosing) or if you may have complicating coinfections going on. Lots of MCTD patients here find out later that Lyme and Co are factors in their disease state and this means seeking out a Lyme treating physician who would then assess for tickborne infections and introduce a combination abx protocol.

How are you doing thus far on this dose? Any herxing yet? Are you taking any other rheumatic drugs? Sometimes when folk find AP, they are already on conventional immune-suppressants, so it just makes sense to start on a higher daily dosing schedule to get as much immune-modulation from mino as possible in that sort of scenario…then, when symptoms level out, the other drugs can be gradually weaned with the doc’s help, one at a time.

[flossymaud]

thanks for your advice, so far ive noticed that my breathing has got slightly worse and my fingers are more painful, but its hard to know if its a result of the antibiotic or if it would have happened anyway! Ialso take plaquenil and prednisolone 5mg. So far have not been able to drop prednisolone below 5mg due to breathing problems, hoping the antibiotics work so i can come off them. At the beginning, when i first became ill i asked my GP if lyme could be a possibility but he said no because we dont have it in britain(dont know if this is true or not, any ideas?) i really appreciate your advice, thankyou 😀

[Maz]

@flossymaud wrote:

thanks for your advice, so far ive noticed that my breathing has got slightly worse and my fingers are more painful, but its hard to know if its a result of the antibiotic or if it would have happened anyway! Ialso take plaquenil and prednisolone 5mg. So far have not been able to drop prednisolone below 5mg due to breathing problems, hoping the antibiotics work so i can come off them. At the beginning, when i first became ill i asked my GP if lyme could be a possibility but he said no because we dont have it in britain(dont know if this is true or not, any ideas?) i really appreciate your advice, thankyou 😀

Hi FlossyMaud,

Oh dear…seems your GP is behind the times! Even the NHS admits to Lyme being in UK. My mother-in-law is in Kent and she’s constantly sending me info on news she has heard re: Lyme in UK.

http://www.nhs.uk/conditions/Lyme-disease/Pages/Introduction.aspx

Unfortunately, as much as the mainstream medical world wants to ignore this pandemic, Lyme is everywhere now and even strains that were only thought to be in certain locations of the world are being found here in the UK and in Europe….now even as far as Australia. Ticks are carried on the backs of migrating birds, but also just the fact that folk are traveling all over the world for business and vacations means that docs can no longer say that “England is an island unto itself” and quarantined.

Most folk try to get stabilized on their antibiotic therapy for a few months before trying to wean from their immune-suppressing drugs. Plaquenil isn’t an awful DMARD to be on and even Lyme docs are using it, because it’s an anti-malaria (treats protozoan infections) and has some nice anti-inflam properties. Prednisone is likely to be more harmful in the longer run, causing osteoporosis, diabetes, cataracts and leaving one open to infections…just to name a few, but not to worry you. The adrenal glands are said to manufacture about 5mg of natural cortisone per day and Dr.Brown felt it was okay to use this amount for short periods of time to help patients over the worst of herxing/flaring. However, it’s not a drug anyone wants to be on for years if at all possible. Those last 5mg of pred can be very hard to wean from, because the adrenals tend to stop manufacturing their own cortisone after a while. In fact,it can be dangerous to try to stop prednisone cold turkey for this reason, so very careful weaning needs to be done with the help of your doc, if poss.

It’s very important to think about ways to help your body detox while on AP, because it is the toxins from dying bugs that create all the symptoms. The body can become overwhelmed with toxins, causing existing symptoms to worsen for a while and sometimes new symptoms arising. There are some easy things anyone can do, like drink lots of fresh pure water, make sure bowels are moving regularly and eating a clean, fresh diet. Glutathione is the body’s master detoxifier and the lungs are a rich repository of glutathione (produced in the liver), but depleted when we are chronically ill. This is why folk around here will use supps like NAC (N-acetylcysteine), which is used to help those with lung fibrosis.

It’s all a lot to take in at the beginning, Flossy, but if you hang around here and read posts daily (also use the search box at the top of the General Discussion threads) to look for topics that you have questions on, you will be an expert in no time at all. 🙂

If you need insight on your current dose, I can supply you with the contact info of Dr. S. here in the US who is very kind to answer phone/email inquiries from patients and physicians new to the therapy. Just let me now.

[flossymaud]

thank you so much, your a godsend, if you could give the contact details of that dr. that would be great, once again, thankyou.

[Maz]

@flossymaud wrote:

if you could give the contact details of that dr. that would be great, once again, thankyou.

Hi Flossy,

Will send you a PM (private message) with this doc’s contact info. To retrieve your PM,just look to the top of this page and click where it says (1 new message), right beside your User Control Panel. This doc is currently on vacation for a couple weeks, so you may need to wait for a bit for a response. 😉

[Lisabuf]

Flossymaud,
Hi – I know what you mean…all the information can be overwhelming. And sometimes you feel like your whole life is consumed with your disease: living with it, medicating it, eating for it, supplementing for it, etc. I have also had some doubts about my mino dose for RA, because my rheum. doc prescribed it (at my request) for daily use as an immune system modulator. So I’m taking the 100 mg 2X day on MWF because of what I’ve read here…and I’m hoping that dose is right for me. So far my disease continues to progress with new knots forming and growing bigger on my fingers. I am just now trying to explore diet modification as a way to handle my symptoms, but again, the information is overwhelming and what works for one individual doesn’t always work for another. So I guess I’m just saying, “you’re not alone” and we have to help each other hang in there. I wish you success in your journey.
Lisa

[flossymaud]

thankyou so much lisa, for your words of support. how long have you been on the antibiotic protocol ?

[Patricia.Ann]

Hi Flossymaud

A fellow Uker here!! 🙂 I am in exactly the same situation as you are. My rheumatologist has prescribed the minocycline for me but I am having to take ‘the lead’ with it. How lucky are we though having a rheumy who will work with us 😀 😀

I am also taking 100mg x 3 weekly and am onto my second week. Having said that my RA is so inflammatory (although no RA Factor or Anti CCP) that I am taking it very slowly at 50mg twice weekly then working my way up. Seems like we must give it a bit of time to see if the minocyline does it’s job. Dr S in Iowa is absolutely brilliant. I sent him an email and less than a week later came a reply so I would definitely do that Flossy.

Maz’s welcome and information are invaluable. The support I have been given from the very caring people on this forum is nothing short of amazing. You will be helped enormously. I guess it is just one step at a time otherwise it becomes so overwhelming we may well want to give up.

I absolutely believe this protocol will work and that we just have to give it a little time, perhaps tweaking as we go. There is plenty of help available on here, with Dr S and also an AP Doc in Surrey, who is very kindly and patient apparently, if you want a ‘second opinion’. I haven’t been to see him yet but will if I need more help than the normal 100mg x 3. Then of course there is diet and supplements – but I think we have to get ourselves in the routine of taking the antibiotics (and don’t forget the probiotics) then add in diet etc. We are the best judge of how we feel and will know without a doubt when the changes start. Won’t it be good to feel better?? It just takes time 🙄

Take care.

Patricia x

[Lisabuf]

Flossymaud – I started Minocin in August of this year. The only other med I had taken was Plaquenil, which definitely helped calm all my symptoms (I almost forgot I had RA); but after 3 months of Plaquenil I had severe stomach cramping after taking it. My doc said I probably don’t metabolize it efficiently enough and it just took a while for it to build up enough to cause the symptoms. She then suggested methotrexate, which I declined. I came off Plaquenil completely for about a month to get rid of the cramps, flared terribly and then started taking 1/2 Plaq daily. About a month after starting mino I try to take the Plaq only on the days I don’t take mino…but as I said in the previous post I can see and feel my symptoms progressing. I’m trying to be patient and stay hopeful the antibiotics will work, but it is hard when you see the effects of the disease. I would take Plaq more often, but I have terrible nightmares with it!

[Patricia.Ann]

Hi Lisabuf 🙂

Just a thought – Have you tried emailing Dr S in Iowa to see what he feels about your dosing and continued symptoms?? Might just ‘put your mind at rest’. It is difficult but I feel that at least we have our rhumtologists ‘on side’. Let’s just hope that the antibiotics kick in for all three of us very soon. That would make us 😀

Take care.

Patricia x

[jbower79]

Hi Everyone,
This is my first post although I have talked via email and phone to a couple of wonderful people from The Road Back Foundation. My daughter who just turned 17 has suffered with health problems for over 2 years now maybe longer and we just didn’t see it. Anyway, she was diagnosed with Scleroderma at the end of June and was also clinically diagnosed with Lyme in August. We did take my daughter to Dr. S in Iowa for the IV treatment. She tolerated it very well (which of course I don’t know if that was good or bad because she didn’t feel any better either so I guess I would rather have seen herxing to nothing) and then was prescribed Minocycline 100mg 2xday. That mino dose made her herx so she was told to do the 100mg MWF dosing. For the Lyme (saw a doc in MO), she was prescribed 4000 mg Amoxi with 875mg of Augmentin. Before I could build the dose of Amoxi to 4000 (got to 3000mg) and no augmentin yet, she started feeling so badly the Lyme doc recommended stopping the abx for 5-7 days and then restarting very slowly. So we stopped (except left the mino 3x week dose) for 6 days and then started again slowly. I have her on 500 mg Amoxi/200mg Augmentin 2 x day. So far she is coping with that but overall she is terrible! The fatigue just keeps getting worse and she is in so much pain. Nothing seems to be getting better but getting worse constantly. It is so hard to decide if she is herxing or if it is the disease because when she goes off the medication, she doesn’t notice any difference really. Some of the dizziness and brain fog the the drugs may cause gets a little better. She has had such a terrible high school experience and is a senior now trying to apply to colleges etc. I so hoped this treatment would give her back at least part of her senior year. She used to dance ballet 20 hours a week and now can’t even keep up with the school dance team that practices once a week. She has hormonal imbalance, gluten and dairy sensitivity so has removed those from her diet. We just in the last few days have her removing the ‘night shade’ foods to see if that has an impact. Removing dairy and gluten (has been almost 3 months) has not resulted in any noticable improvement. We also got her an infrared sauna which she uses 3-4 times a week and will tolerate anywhere between 20-40 minutes at a time. She drinks about 3 liters of water a day. Most recently we wondered if anyone has had experience with high doses of vit c making scleroderma worse? We were doing high dose vit c and magnesium for constipation and detox but have taken away vit c to see if that was causing scleroderma flare.
Sorry for long post, have been reading this site for so long and finally decided to join in.

[Maz]

@jbower79 wrote:

That mino dose made her herx so she was told to do the 100mg MWF dosing. For the Lyme (saw a doc in MO), she was prescribed 4000 mg Amoxi with 875mg of Augmentin. Before I could build the dose of Amoxi to 4000 (got to 3000mg) and no augmentin yet, she started feeling so badly the Lyme doc recommended stopping the abx for 5-7 days and then restarting very slowly. So we stopped (except left the mino 3x week dose) for 6 days and then started again slowly. I have her on 500 mg Amoxi/200mg Augmentin 2 x day. So far she is coping with that but overall she is terrible! The fatigue just keeps getting worse and she is in so much pain. Nothing seems to be getting better but getting worse constantly. It is so hard to decide if she is herxing or if it is the disease because when she goes off the medication, she doesn’t notice any difference really. Some of the dizziness and brain fog the the drugs may cause gets a little better.

Hi JBower79,

Very nice of you to join us and welcome! 🙂

Just a suggestion, but it might help to get more responses if you start a brand new discussion thread with its own subject line. Also, if you can add a signature line with your daughter’s diagnosis, date of diagnosis, and any meds/supps she is on, this can also help folk to answer from their own personal experience of a disease or meds being discussed. We’re just fellow patients here and no medical people, so what you will receive in the shape of responses will be just a sharing of personal experience or what someone has read that may be of value. To add a signature line which will appear each time you post and can be edited at any time, just click on the user control panel above, then click “Profile” and then click the “Edit signature” tab.

It sounds like what has happened here is the mixing of two different approaches to treat SD. Dr. Brown’s low dose protocols for rheumatic diseases is very different from the approaches used for the treatment of chronic Lyme disease, as the abx and their combos/doses are very different.

With SD, whatever else is added to the minocycline, which should be a staple, should complement it. In this context, does Dr. C. know your daughter is still taking the mino 100mg MWF, because tetracyclines and penicillins are contraindicated for use together and your daughter is on two types of oral penicillin – amoxicillin and augmentin. My best guess is that he is using these two different penicillin together to hit amoxicillin-resistant bacteria that produce ?-lactamase, but tetras reduce the effectiveness of penicillins, so it may not be very helpful taking them together.

Penicillin are used for the cell-walled form of the Lyme spirochete and herxes can be difficult. I was on Moxatag (extended release amoxy 775mg BID) for 8 or 9 months and I herxed like the dickens for 5 weeks. Penicillins drive spirochetes into their cystic forms, so usually some form of cyst-busting med will be used, too (which adds to the fun). My LLMD would always have me on Diflucan at the same time as a penicilin (whether oral or bicillin IM shots) to prevent candida overgrowth, but also because Diflucan has some effect on acting as a P450 blockade that disrupts the bugs’ metabolism, too (Diflucan 100mg BID is called, “The Shardt Protocol” after the German doc who found that this anti-fungal helped to bring his Lyme to remission).

I have to admit, if I had the SD/Lyme mix, I wouldn’t want to compromise being on minocycline 100mg BID as my staple, with the addition of a macrolide (like azithromycin or biaxin) and a cyst-busting med, like flagyl or tinidazole (in pulses). One can’t use a macrolide abx with diflucan (both shut down P450 cytochrome and it’s too hard on the liver), so if candida became a problem, I’d probably ask my LLMD about switching out the macrolide for diflucan in pulses.

Unfortunately, with SD, it can be a bit of a freight train. Starting abx won’t immediately slow that freight train down…it’s slowed very slowly and takes a while for the disease, itself, to stop progressing, halt and then for symptoms to reverse in some folks. This is why I would not want to compromise on the minocycline and would want to be on that as a staple, as it has some amazing immune-modulating effects for SD. Then, whatever else was added for the Lyme, would need to complement the tetracycline.

The strange thing is that lots of SD patients say they have never herxed on mino or clindy IVs. However, when the Lyme and coinfections component his being hit, they do herx. This is only surmise based on patient experience and what it says in the physician packets on the main site, but this may be because those with SD don’t usually have a lot of overt inflammation and it’s inflammation that generally causes so much tissue hypersensitivity with die-off. When the right anti-microbials are targeting certain pathogens, this can create inflammation and, thus herxing. However, if a SD patient isn’t herxing, this isn’t a bad thing…minocycline will and should reduce disease symptoms alone…it’s just that not treating possible Lyme and coinfections can keep patients sick. In a nutshell, adding a Lyme protocol to the Harvard Protocol (minocycline 100mg BID) needs to be a measured approach. In the beginning stages, if I had SD, in other words, I would not want to stop minocycline to use a different abx to hit Lyme spirochetes in their cell-walled forms only. This is because SD is one disease that seems to need the immune-modulation that the tetracyclines afford and, for chronic states of Lyme, it may be less effective to only treat one form of the spirochete. So, I would add to minocycline, but I wouldn’t subtract it at the outset. Maybe later, when SD is well-controlled I would consider switching out to a different abx, but not before.

Also, if it’s hard to tolerate mino in the Harvard Protocol dose, I would start low and slow, but would definitely try to slowly build up to the 100mg BID dose…the more immune-modulation one can get from mino for SD the better, to slow it down as swiftly as possible. Just my humble take, though, but I would probably go back to Dr. C. and ask for the penicillin at this stage to be switched out to minocycline, zith or biaxin and an anti-protozal with cyst-busting props, like tinidazole. And, if herxing was intolerable, I’d just start low and slow and work up the dose. Others here with the SD/Lyme mix may have more insight for you, but just thought to offer this for further discussion with your doc. 😉

Hope something here might help with a possible way to move forward, jbower79! 🙂

[flossymaud]

patricia- thnkyou for your post, it is so nice to talk to someone who understands the difficulties in not having adr. who understands the antibiotic protocol. It is also really nice to know that there is a dr. who does this protocol in surrey, do you know what hospital he is based at? I have messaged Dr. s and am anxiously awaiting his reply(he is on vacation at present).
keep me posted on your progress, i hope and pray this is the answer weve all been looking for.
take care.

[jbower79]

Maz,
Thank you for all the info and I will get myself set up properly with signature line etc. Dr. C does know my daughter (Abby) is taking the mino for scleroderma and agreed that she should stay on it. I am surprised he did not mention the issues with it and amoxi. I will be placing a call today.
Thanks again!

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