Dosage for Doxycycline

[niteowl]

So now I am on Doxycycline 50 mg MWF. Things went well the first two weeks but now I am having a recurrence of herx/ flares.
Should I reduce the dose?
Or should I abstain from this med for a week and then reduce dose?
Any advice would be welcome.

Diagnosed with RA in 2012
Fifth Disease in '03
Lyme? in 2000?
Had radioactive ablation of hyperactive thyroid in 1997
autoimmune thrombocytopenia resolved
Anemia resolved with treatment of RA with Minocycline
Blood type: B neg

Meds:
Minocycline 50mg once a week
Levothyroxine .88mg
Liothyronine 5mg
Methotrexate 20 mg once a week

Folic acid
B12
B6
Vit D
Biotin
Biosil
Cbd balm
Flexaril as needed
Aspirin
Benedryl
Ventolin inhaler
Lactibiane probiotic

[niteowl]

I’m guessing no one has an answer for this?

Diagnosed with RA in 2012
Fifth Disease in '03
Lyme? in 2000?
Had radioactive ablation of hyperactive thyroid in 1997
autoimmune thrombocytopenia resolved
Anemia resolved with treatment of RA with Minocycline
Blood type: B neg

Meds:
Minocycline 50mg once a week
Levothyroxine .88mg
Liothyronine 5mg
Methotrexate 20 mg once a week

Folic acid
B12
B6
Vit D
Biotin
Biosil
Cbd balm
Flexaril as needed
Aspirin
Benedryl
Ventolin inhaler
Lactibiane probiotic

[Maz]

Hi Niteowl,

Can you share when you switched from minocycline and why? This might help with responses. Also, in your signature, it says you were taking 30mg of mino every other day…did you mean 50mg? What is your liothyronine dose? Had your thyroid levels checked recently (TSH, free T3, free T4, Reverse T3)?

[niteowl]

Hi Maz!
Thanks for your response! I had been on Minocycline since 2012. Initially, I did not have a Roadback Physician, just a Rheumatologist who put me on the Marshall Protocol of 100mg twice a day! A month later I herxed so bad that I couldn’t walk. As per the advice I got here, I took a vacation before resuming to a lower dose of 100mg every other day. This worked pretty well until I started having some hip issues. So my Rheumy gave me some steroid injections into my hip(twice total). Then I came into contact with poison ivy, went on a Medrol dose pack (titrated dosage of steroids) and everytime I tried to stop the steroids, I would get a rebound of RA symptoms. I finally got off steroids after a year and a half. I started seeing a Roadback physician and we did an elimination diet and started on a much lower dose of Mino at 10mg Watson (compounded), M-W-F. It wasn’t making a big difference in my RA symptoms. So slowly over the next 2 years, he increased my dose to 50mg of Mino M-W-F. I couldn’t tolerate that very well as I began getting chills severe pain in an RA way. It took about 2-3 hours after each dose to feel a bit better. My Husband and I thought the Roadback physician wanted me to be at 100mg everyday. So the only way I could acheive that was by taking 50mg in AM and 50mg at nite. Still having 2-3 hours of chills, pain and stiffness to the point my shoulders were so painful, they woke me up 3 hours after going to bed and I could only finish sleeping by sitting up.
A little backstory: We have lots of American dog ticks in our yard but I don’t recall seeing deer ticks and I may have had a case of body lice from a pediatric patient back in 99, although I had all the symptoms of Lyme, except I had saucer sized hives and no Bullseye rash. If it was lice, no one in my family got them. I had Parvovirus aka Fifth Disease in 2003 and had some symptoms like RA, especially in my knees and hands.
The physician who saw me in the ER in 99, did not do any bloodwork at the time as he thought it was lice, who knows?

Current day. I felt really good the first week on Doxycycline, but then I started having an increase in symptoms. So I stopped the dosage last week to detoxify. I now get chills at night with a low grade fever. My shoulders have not come back since last fall. I can’t lift my arms much above my head, yikes!
My AP Roadback physician is retiring from AP patients – maybe I scared him?! So I will need another recommendation for another one.
I switched to Doxy after discussing my reaction to Mino here under the “Help” header in general discussion. I don’t have an ANA result for this year but it was negative in 2012. My Thyroid levels were good according to my Endocrinologist.
So now I am wondering if I should try Doxy 50mg once a week for awhile?
Sorry this is so lengthy! And thanks!

Diagnosed with RA in 2012
Fifth Disease in '03
Lyme? in 2000?
Had radioactive ablation of hyperactive thyroid in 1997
autoimmune thrombocytopenia resolved
Anemia resolved with treatment of RA with Minocycline
Blood type: B neg

Meds:
Minocycline 50mg once a week
Levothyroxine .88mg
Liothyronine 5mg
Methotrexate 20 mg once a week

Folic acid
B12
B6
Vit D
Biotin
Biosil
Cbd balm
Flexaril as needed
Aspirin
Benedryl
Ventolin inhaler
Lactibiane probiotic

[Maz]

Hi Niteowl,

niteowl wrote:

Hi Maz!
Thanks for your response! I had been on Minocycline since 2012. Initially, I did not have a Roadback Physician, just a Rheumatologist who put me on the Marshall Protocol of 100mg twice a day! A month later I herxed so bad that I couldn’t walk.

This is so surprising – (a) that a rheumy would use Marshall Protocol for starters, but (b) that such a high dose of minocycline was used in the Marshall Protocol. Did he also put you on high dose Benicar? Is this Dr. F. in CA, by any chance, or another AP rheumy?

As per the advice I got here, I took a vacation before resuming to a lower dose of 100mg every other day. This worked pretty well until I started having some hip issues. So my Rheumy gave me some steroid injections into my hip(twice total). Then I came into contact with poison ivy, went on a Medrol dose pack (titrated dosage of steroids) and everytime I tried to stop the steroids, I would get a rebound of RA symptoms. I finally got off steroids after a year and a half. I started seeing a Roadback physician and we did an elimination diet and started on a much lower dose of Mino at 10mg Watson (compounded), M-W-F. It wasn’t making a big difference in my RA symptoms. So slowly over the next 2 years, he increased my dose to 50mg of Mino M-W-F. I couldn’t tolerate that very well as I began getting chills severe pain in an RA way. It took about 2-3 hours after each dose to feel a bit better. My Husband and I thought the Roadback physician wanted me to be at 100mg everyday. So the only way I could acheive that was by taking 50mg in AM and 50mg at nite. Still having 2-3 hours of chills, pain and stiffness to the point my shoulders were so painful, they woke me up 3 hours after going to bed and I could only finish sleeping by sitting up.

I’m just seeing that you also had autoimmune thrombocytopenia – presumably ITP (idiopathic thrombocytopenic purpura)? You mentioned having a negative ANA in 2012, but it might be a good idea to have this lab re-run and also some new rheumatic labs to check for any other anomalies. I’m just wondering if what you’re experiencing is a lupus overlap or drug-induced lupus….or a severe hypersensitivity reaction to tetracyclines. Your AP rheumy should be able to check you for this (ANA, anti-histone ABs, plus double- and single-stranded anti-DNA). What you’re describing sounds like drug-induced lupus erythematosus aka DILE (which I unfortunately get from a number of different types of drugs, including mino and beta blockers). However, as you also have autoimmune thrombocytopenia, I’m wondering if your rheumy may have ever suspected an overlap with real lupus?

I’m feeling your pain, because without a thyroid, I’ve been through similar when I got DILE from the beta blocker last year (needed due to toxic goiter prior to my thyroidectomy and while they were stabilizing my thyroid replacement meds). The inflammation from the DILE led to an inability to convert my T4 med to the active hormone T3 and I started getting tendinitis, boggy swelling, and bicep pain so bad I couldn’t raise my arms…yet my thyroid labs (at least the ones the endo checks) were normal on paper! I’ve since learned the value of checking these primary thyroid labs in rheumatic disease: TSH, Free T4 and Free T3, along with Reverse T3. When I stopped the beta blocker and the doc added in an extra 5mcg of liothyronine, it made a huge difference within weeks, both in my pain levels and RA labs…and I dropped a ton of water weight from the boggy myxedema-like swelling. I’m not saying this is what is happening for you, but just thought to mention it in case it resonates in some way and it might provide some ideas for discussing with your doc.

A little backstory: We have lots of American dog ticks in our yard but I don’t recall seeing deer ticks and I may have had a case of body lice from a pediatric patient back in 99, although I had all the symptoms of Lyme, except I had saucer sized hives and no Bullseye rash. If it was lice, no one in my family got them. I had Parvovirus aka Fifth Disease in 2003 and had some symptoms like RA, especially in my knees and hands. The physician who saw me in the ER in 99, did not do any bloodwork at the time as he thought it was lice, who knows?

Gee, we could be relatives! Parvo affected me similarly in my early 30s when my daughters got it when they were small. Horrid joint pain and swelling for months. Well, dog ticks primarily pass Rocky Mountain spotted fever and tularemia, which you likely already know. However, with autoimmune thrombocytopenia, I’m wondering if anyone ever tested you for babesiosis. Here in the northeast US, babesia microti is common, but on the west coast, babesia WA1/duncani are more common. Some of the LLMDs in this area are correlating babesiosis with low platelet counts, so this is why I’m mentioning this. These infections all suck, and I have no doubt that old viruses are able to reactivate when some other infection occurs and disables immunity.

Current day. I felt really good the first week on Doxycycline, but then I started having an increase in symptoms. So I stopped the dosage last week to detoxify. I now get chills at night with a low grade fever. My shoulders have not come back since last fall. I can’t lift my arms much above my head, yikes!

Things I’d get checked are DILE, but also have some fresh rheumatic labs drawn. Rheumatic diseases can morph over time and early rheumatic disease can present as being seronegative, but then labs can become positive over time. It’s just routine to check these, so nothing to worry about, but it may provide clues about why you’re experiencing this degree of hypersensitivity to tetracyclines. It could be a herx, but in this type of scenario, after being on mino for a number of years, it’s just worth checking for differentials. The definition of insanity is doing the same thing over and over and expecting a different result, so the saying goes. So, in your case, you may do better altogether on a different class of antibiotic and possibly adding in some other supports, like LDN and getting checked for heavy metals. Interestingly, one other lady here with RA (Michele) had a similar time of it and later discovered she had both Lyme and babesiosis, but also a heavy metal load. Heavy metals can cause extreme hypersensitivity issues in some folk. Once she addressed her mercury load, she was able to tolerate minocycline and she also had to treat her babesia WA-1 (unusual on the east coast).

My AP Roadback physician is retiring from AP patients – maybe I scared him?! So I will need another recommendation for another one.

If you can manage to get a really thorough rheumatic work-up and also check for DILE before he retires, this would give you a good working baseline to take to either a LLMD or new AP doc (most of whom aren’t rheumies). I’m more intrigued now that your AP rheumy is retiring…is he on our AP doc list? If so, we haven’t been informed yet of his retirement. Would you kindly PM me with his name and location? Thanks, Niteowl.

I switched to Doxy after discussing my reaction to Mino here under the “Help” header in general discussion. I don’t have an ANA result for this year but it was negative in 2012. My Thyroid levels were good according to my Endocrinologist.
So now I am wondering if I should try Doxy 50mg once a week for awhile?
Sorry this is so lengthy! And thanks!

Hope the above helps a bit, Niteowl. Hard to know what is going on as there seem to be some variables here that could be influencing things – the ITP, the tick bites, the specific reactions you’re experiencing and also your ablated thyroid. A really good integrative AP doc or LLMD should be able to help you. If you need a new AP doc list, you can write to apdoctorlists@roadback.org, including”

1. Your geographic area – country, state, city or region
2. A phone number at which you can be reached (US patients only)
3. The disease you are dealing with
4. Whether you would consider traveling and would also like a list of the most experienced doctors
Note: check your SPAM inbox for replies. If you have SPAM filter software, please add apdoctorlists@roadback.org to your contacts to ensure you receive the response.

If you need a new LLMD, send same info to llmdlists@roadback.org and I’ll reply to you there.

Would be a good idea to hop on this soon, as your current AP doc is retiring in the near future. Some of these docs have long wait-lists for new patients.

Wishing you the best and come let us know when you have some more info to share and we’ll try to provide some peer-insight for you.

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