Home Forums General Discussion Daily or pulsing minocycline

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  • #464621
    Carol
    Participant

    I am new to this forum. I have read much of the information. I have a question. I am on antibiotics, but my functional / traditional doctor lets me determined dosage and time frame. I don’t want the antibiotics to become resistant to the bacterium, but I feel better taking a daily dose of 100 mg of Minocycline. I can’t take tetracycline or doxycycline as it burns my face. I can only take the Minocycline. Does anyone have any experience with dosing daily at 100mg? Thank you for any help. This form has been a godsend during the darkest days. I haven’t been diagnosed, it’s a long story, but I have symptoms of sjogrens…. dry eyes, dry mouth, but additional symptoms of burning in the stomach, right foot numb. I have been on a Lyme’s antibiotic treatment for two and a half years, and I’ve just recently started on just Minocycline. My other symptoms which were extensive, hair loss, heart palpitations, muscle waste, joint swelling, vascular issues, have seemed to diminish. I’m only left with the burning in the stomach..and burning mouth.and dryness in my mouth and eyes. I would appreciate any feedback from anyone. My doctor is very willing to treat, but I feel like the Lone Ranger and I don’t want to make any mistakes. I don’t want to become resistant. Does anyone have any suggestions?

    #464623
    Carol
    Participant

    I additionally wanted to ask if anyone had any success with sjogrens on daily minocycline? I’m even contemplating taking it twice per day, as it seems on some days I do better twice per day. As indicated, I am new to all of this AP therapy. Previous to this I was in the mindset of Lyme’s disease. I’ve been to a rheumatologist twice, had a high ANA but months later it came down. Rheumatologist was waiting for more symptoms….but I was in excruciating pain with the dryness and burning in my stomach and mouth…. along with the other things that were happening. It just felt like things were continually going wrong and I couldn’t wait any longer. So my doctor treated me based on symptoms, for Lyme’s. The treatment was working great for two and a half years, but as indicated up above, the dryness and burning mouth seemed to continue. So now I’m wondering whether it’s Lyme’s or a Rheumatic issue. I guess it doesn’t really matter because I am being treated with antibiotics, but just wanted some advice on what others have found useful for sjogrens. Thank you for any advice you can give me, desperate to get better!

    #464636
    Maz
    Keymaster

    Hi Carol,

    Nice to see you here!

    Quick questions:

    Have ever been tested for H. Pylori?

    Do you recall what results you had on your ANA re: pattern?

    Ever tried bovine colostrum and/or chewing on non-denatured whey protein?

    #464637
    Carol
    Participant

    Thank you Maz for responding. Back when all of this started, January of 2015, following an animal bite which landed me in the hospital in December of 2014. (Three IV antibiotic treatments) , sent home with a week’s worth of amoxicillin.. My arm was swollen from the hand up to the armpit….. I started with the stomach issues. My primary care physician at the time kept giving me antacids, proton pump inhibitors, he tried everything for my stomach issues. I kept mentioning h-pylori, as I had done research. He just mumbled something about that probably wasn’t going to be the issue. He was so set on myself having reflux and issues of that nature. I did go through an upper Endoscopy in which case they found nothing, they just told me to keep on taking what I was prescribed, the antacids. Maybe that’s something now I can have tested with my new functional / traditional Dr. After my stomach issues it escalated into burning into the mouth nose and stomach and then I had extreme dryness. From there it escalated into many other symptoms. Date of blood work from an ENT was 3-19-2016. ANA titer >1:640 speckled pattern detected. I subsequently went to a rheumatologist and they collected blood on 5-24-2016 which showed ANA of 1:320 speckled with a negative CCP and RF and normal SPEP. my IgG subclass was normal other than slightly reduced IgG2. My iron level was a little low at 40, with an iron saturation of 13%. I returned on 6 – 6 – 16 and had additional Labs which revealed normal C3 and C4 with a negative dsDNA and normal SPEP. I then began developing numbness in my feet which was getting worse. I had pain in my joints and occasional pain in the wrist and Ankle. I did not have a minor salivary gland biopsy, in which I will not do, based on information from an acquaintance who had subsequent further dryness after the gland biopsy. The rheumatologist didn’t seem to know what to do anyway. So that’s when I started my route on antibiotics for Lyme’s treatment. And as indicated above it did help tremendously. Thank you again for your response. I hope this makes sense.

    #464638
    Carol
    Participant

    MAZ…I forgot to mention I’ve never heard of bovine colostrum and/or chewing on non-denatured whey protein….. but I’m willing to try anything! I will have to research that, thank you for the suggestion.

    #464640
    Maz
    Keymaster

    Did they determine what infection (or toxin, if snake or other animal) you had from the animal bite? Which animal?

    Yes, good idea to ask your functional med doc about H. Pylori testing and which method would be best in your case (breath, serum, stool as each method has upsides and limitations). It’s just something that might be worthwhile ruling in/out.

    Without knowing which antibiotics you did for Lyme and in what combination, it would be hard to know if that treatment may have worked for H. Pylori. There are specific protocols for each, and although both are spirochetal infections that in some instances can be challenging to treat, there are nuances to the protocols that are specific to each infection (see The Helicobacter Foundation).

    Sjogren’s has been associated with gut dysbiosis and an imbalanced microbiome, just as other rheumatic diseases have been found to have the same association.

    Sjögren syndrome and Helicobacter pylori infection

    Altered Mucosal Microbiome Diversity and Disease Severity in Sjögren Syndrome

    So, one infection can trip off overgrowths of other infections that might become opportunistic, too. E.g., Lyme escapes immune detection by suppressing immunity, so other infections may reactivate. This is why “Lyme” (named after the town of Lyme, CT) is now called MSIDs (mixed systemic infectious diseases syndrome), because folks with suppressed immunity from Lyme and other tickborne coinfections, might be subject to all kinds of overgrowths (viral, fungal, and bacterial…not to mention susceptibilities to environmental toxins, like mold).

    As for speckled ANA, it usually shows up in Sjogren syndrome, scleroderma, polymyositis, rheumatoid arthritis or mixed connective tissue disease, and sometimes lupus. Presumably, you tested negative on these with further testing? Just asking as wondering if it might be Primary or Secondary Sjogren’s? The fact that you responded so well to Lyme protocols is a good sign that whatever is driving all this for you is responding to treatment. So, narrowing the infection field down at this stage might prove helpful in terms of determining a more targeted protocol? Maybe some things to discuss with your doc?

    Is your integrative functional med doc on the RBF doc list, do you know? Would you very kindly PM me with his/her info, Carol? Just click on my user ID (Maz) by my pic and select “private message.” Thanks!

    #464641
    Carol
    Participant

    Maz, thank you for the invaluable information. Somehow I feel you are right on Target because it all started in my stomach. I will print this information and ask my doctor, I have an appointment soon. Could you let me know whether you received my private message? I’m not sure still how to navigate through this website. As far as the rheumatologist, I never went back because he was waiting for more symptoms to appear and I wasn’t willing to wait that long. He never diagnosed me with anything. He said my symptoms would have to be a little bit more prominent before he could diagnose me so I don’t know whether its primary or secondary sjogrens…I then went to my doctor and she started me on antibiotics for multiple chronic infectious disease. I have a combination of antibiotics that I have used over a span of two and a half years. I didn’t know if you wanted me to list those or not? Thank you again for this information it is so helpful.

    #464642
    Carol
    Participant

    I forgot to indicate what animal bite, it was a cat bite. It was my cat, but a stray cat that I took off the streets several years prior to the bite. It was a pretty deep bite in the back of my hand, not at the fault of the cat just from Fear of being brushed. I do know that cats can carry Bartonella.

    #464656
    PhilC
    Participant

    Hi Carol,

    I am on antibiotics, but my functional / traditional doctor lets me determined dosage and time frame. I don’t want the antibiotics to become resistant to the bacterium, but I feel better taking a daily dose of 100 mg of Minocycline.

    That’s fine. The risk of bacteria becoming resistant to minocycline is higher if you take a dose that is too low, so you don’t need to worry about taking it every day.

    I additionally wanted to ask if anyone had any success with sjogrens on daily minocycline? I’m even contemplating taking it twice per day, as it seems on some days I do better twice per day.

    That’s not a problem. In fact, taking 100 mg of mino twice a day is likely to be more effective.

    Does anyone have any experience with dosing daily at 100mg?

    I’ve been taking doxycycline or minocycline every day for over seven years. I don’t have Sjögren’s Syndrome, but I had a problem with my left eye being drier than normal for many years. That problem now seems to be gone.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #464658
    Maz
    Keymaster

    I do know that cats can carry Bartonella.

    Yes, and toxoplasmosis.

    Hope you got my replies to your PMs okay, Carol? Also hope your doc appt went well yesterday.

    Regarding Pulsed vs. Daily dosing, much has to do with how well minocycline is tolerated. Degree of pre-existing inflammation can have a lot to do with degree of herxing. It’s far easier to slowly dial the dose up than have to dial it down when in the midst of a big herx.

    This is described in FAQ #15 on site and also a chapter in the Scammell book on titrating the dose to tolerance.

    #464661
    Carol
    Participant

    Phil and Maz thank you so much for the valuable information! The information really does help. It is such a God send to get a second opinion from someone with experience. You just don’t know how much it means to me! I am so thankful for this site!

    #464663
    Maz
    Keymaster

    MAZ…I forgot to mention I’ve never heard of bovine colostrum and/or chewing on non-denatured whey protein….. but I’m willing to try anything! I will have to research that, thank you for the suggestion.

    These might help you get started in your studies, Carol:

    Oral findings in patients with primary Sjögren’s syndrome and oral lichen planus–a preliminary study on the effects of bovine colostrum-containing oral hygiene products.

    Polyvalent immunoglobulins with vitamin D3 and vitamin B12 in the treatment of Sjogren’s syndrome in a vegetarian with stomatitis, glossodynia, xerostomia, and elevated antinuclear antibodies: Case report
.

    Quality matters with bovine colostrum and my doc recommended looking for one that was produced from grass-fed cattle and where colostrum was collected within hrs of calving.

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