Home Forums General Discussion ***UPDATE*** Improved labs, but I feel horrible!

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  • #307711
    Woods1977
    Participant

    Minocin or no Minocin… That is the question!?

    I thought this topic was noteworthy of it’s own post… I had a visit with my AP doctor today and received the suprise of my life in relation to my lab work:

    Rheumatoid Factor:
    May, 2013: 62.9
    Today: 40.7
    CCP Antibody IGG:
    May, 2013: 5.19
    Today: 3.59

    ***Please note, both sets of labs were performed by the same lab***

    I’ve read, and re-read certain sections of “The Road Back”, and I remember reading the section of the book that discusses how labs sometimes improve before the patient, but my personal road has been nothing short of bizzare! I’d like to note that when I initially responded to AP and feeling well, my labs NEVER IMPROVED… Infact my RA factor and CCP continued to climb higher and higher each time I was tested, regardless if I was feeling well or not. Now I feel like death, and my labs are improving… Unfortunately my sed rate is high- higher than it’s ever been, which is no suprise given I’m feeling the way I do.

    Although my AP doctor was happy about my labs, he’s more concerned with how I’m feeling… but, he still doesn’t want to take me off the Mino. At this point, the plan is to back me down to 10 mg/week of Minocycline. Additionally, he’s going to set me up with a compounding pharmacist to ensure it’s done properly. He thinks I should be able to tollerate 10 mg/week… (at least it shouldn’t put me in bed)… and if not, then we’ll consider moving over to doxy.

    Just my own hypothesis… I’m thinking that when I increased my dose back in June from 50/50/50 to 100/50/50, it really started to “hit the source” so to speak, but killed off too many “critters” as my AP doctor likes to call them, for my body to handle.

    The next plan of action is to try 10mg/wk of Mino and if I can tollerate it. If it works I’ll continue my ramp up very much the way Phil C. did with his increase of Doxy. My AP doc told me I should probably expect a minor flare at the 10 mg/wk when I begin, but it absolutely should not get me sick to the point where I’m in bed. Finally, he put me through the ringer about taking enough anti-inflammatory medicine right now. I generally use Aleve- it works well for me. He basically wants me to keep using the Aleve, but I need to take the prescription dose, not the OTC dose right now. Once I begin feeling better I can taper it down… I’m extremely nervous about this- each time I take one I think “my poor stomach, poor kidneys, poor liver”… but I also know that taking Anti-inflammatory medicine is important right now as well, as I believe it helps the Minocin to hit it’s target.

    I REALLY wish I would have started detoxing sooner. I’m going to turn into a detox junkie! I’m so worried about my internal organs… I want to be as kind to my body as possible right now!

    As for the LDN I recently started, I think I’m going to discontinue using it at this time. If my labs are infact a sign of good things to come, I don’t want anything to potentially intefere with getting better.

    Comments/feedback welcome!

    #369279
    PhilC
    Participant

    @Woods1977 wrote:

    I’ve read, and re-read certain sections of “The Road Back”, and I remember reading the section of the book that discusses how labs sometimes improve before the patient, but my personal road has been nothing short of bizzare! I’d like to note that when I initially responded to AP and feeling well, my labs NEVER IMPROVED… Infact my RA factor and CCP continued to climb higher and higher each time I was tested, regardless if I was feeling well or not. Now I feel like death, and my labs are improving… Unfortunately my sed rate is high- higher than it’s ever been, which is no suprise given I’m feeling the way I do.

    The improvement in your lab test results may be due to the LDN you recently started taking and not minocycline.

    @Woods1977 wrote:

    Although my AP doctor was happy about my labs, he’s more concerned with how I’m feeling… but, he still doesn’t want to take me off the Mino. At this point, the plan is to back me down to 10 mg/week of Minocycline. Additionally, he’s going to set me up with a compounding pharmacist to ensure it’s done properly. He thinks I should be able to tollerate 10 mg/week… (at least it shouldn’t put me in bed)… and if not, then we’ll consider moving over to doxy.

    I never heard of anyone taking such a low dose of minocycline. It’s a very low dose, so low that I wonder if it will do any good.

    Before you spend (and possibly waste) your money on that compounded mino, you might want to do a simple test. You could dump out the contents of a 50 mg capsule onto a small piece of aluminum foil and then transfer about one-fifth of the powder into an empty capsule or back into the original capsule. How you react to that should be a good indication of how you’ll react to a 10-mg dose.

    Phil

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

    #369280
    Woods1977
    Participant

    Thanks for your post Phil!

    To your point, my first dose of LDN was taken on Thursday, July 25th (1.5 mg). A 2nd dose was taken on Friday, July 26th (1.5 mg). My most recent blood draw was completed the morning of Saturday, July 27th. Therefore, it

    #369281
    A Friend
    Participant

    @Woods1977 wrote:

    Minocin or no Minocin… That is the question!?

    I thought this topic was noteworthy of it’s own post… I had a visit with my AP doctor today and received the suprise of my life in relation to my lab work:

    Rheumatoid Factor:
    May, 2013: 62.9
    Today: 40.7
    CCP Antibody IGG:
    May, 2013: 5.19
    Today: 3.59

    ***Please note, both sets of labs were performed by the same lab***

    I’ve read, and re-read certain sections of “The Road Back”, and I remember reading the section of the book that discusses how labs sometimes improve before the patient, but my personal road has been nothing short of bizzare! I’d like to note that when I initially responded to AP and feeling well, my labs NEVER IMPROVED… Infact my RA factor and CCP continued to climb higher and higher each time I was tested, regardless if I was feeling well or not. Now I feel like death, and my labs are improving… Unfortunately my sed rate is high- higher than it’s ever been, which is no suprise given I’m feeling the way I do.

    Although my AP doctor was happy about my labs, he’s more concerned with how I’m feeling… but, he still doesn’t want to take me off the Mino. At this point, the plan is to back me down to 10 mg/week of Minocycline. Additionally, he’s going to set me up with a compounding pharmacist to ensure it’s done properly. He thinks I should be able to tollerate 10 mg/week… (at least it shouldn’t put me in bed)… and if not, then we’ll consider moving over to doxy.

    Just my own hypothesis… I’m thinking that when I increased my dose back in June from 50/50/50 to 100/50/50, it really started to “hit the source” so to speak, but killed off too many “critters” as my AP doctor likes to call them, for my body to handle.

    The next plan of action is to try 10mg/wk of Mino and if I can tollerate it. If it works I’ll continue my ramp up very much the way Phil C. did with his increase of Doxy. My AP doc told me I should probably expect a minor flare at the 10 mg/wk when I begin, but it absolutely should not get me sick to the point where I’m in bed. Finally, he put me through the ringer about taking enough anti-inflammatory medicine right now. I generally use Aleve- it works well for me. He basically wants me to keep using the Aleve, but I need to take the prescription dose, not the OTC dose right now. Once I begin feeling better I can taper it down… I’m extremely nervous about this- each time I take one I think “my poor stomach, poor kidneys, poor liver”… but I also know that taking Anti-inflammatory medicine is important right now as well, as I believe it helps the Minocin to hit it’s target.

    I REALLY wish I would have started detoxing sooner. I’m going to turn into a detox junkie! I’m so worried about my internal organs… I want to be as kind to my body as possible right now!

    As for the LDN I recently started, I think I’m going to discontinue using it at this time. If my labs are infact a sign of good things to come, I don’t want anything to potentially intefere with getting better.

    Comments/feedback welcome!

    Woods,
    What are you doing to help detoxify the acidic wastes that your body is detoxing? Am thinking you probably have a good bit of it going on. Since you feel terrible, you might benefit from trying some of the easier-to-do ones, i.e. the whole lemon/olive oil drink, Far Infrared Sauna, or coffee enemas (not easy, but excellent for the liver). When I was feeling in terrible pain in the middle of the night one time was when I tried the first coffee enema. Amazing relief of the pain.
    AF

    #369282
    Woods1977
    Participant

    Hello A Friend..
    I agree with you 155% about the need for some serious detoxing right now. I’m actually going to the health food store after work to get some veggies. Additionally, I have been doing the Olive Oil/Lemon Juice, but I’d like to switch it up a bit as well…. Thank for your feedback!

    #369283
    Valsmum
    Participant

    I agree with AFriend with the coffee enema, they have helped my pain too. Hope you feel better

    #369284
    Woods1977
    Participant

    ***UPDATE***
    August 15, 2013
    Either someone is looking out for me or I’m just really lucky- I’ll let you be the judge.

    As most of you know I’ve developed an extreme sensitivity to Minocycline. The last three times I’ve taken the medication I’ve experienced flu like symptoms that put me in bed- I honestly don’t remember ever feeling so ill in my life. I don’t know if it’s allergy related, or just a matter of it working “too well”, but regardless, my body just can’t tollerate it anymore.

    When sharing this news with my doctor he still didn’t want to take me off the Minocin, and insisted that I pull back on the dose to 50 mg/wk. I couldn’t even tollerate this dose, once again, flu like symptoms that put me to bed. Went back to doctor again, explained what happened, but was still insistant on me continuing with the Minocin, primarily due to my most recent labs. My June lab results showed a 22 point drop in my RH factor, while my Anti-CCP dropped 1.6 points. Even during the time when I was feeling very well on AP, my labs NEVER improved, infact they just continued to get worse. Unfortunately my once stable inflamation levels are now at a 40, hence why I’m feeling so bad…

    Taking everything into consideration, doc was pleased with my labs, however “more concerned about how the patient is feeling”.. but still wasn’t ready to give up on the Minocin, so he insisted that we go down to 10 mg/wk, then slowly ramp back up. In order to get 10 mg capsules one would need to make their own or go through a compounding pharmacy. Although I was extremely reluctant to try the Minocin again at ANY dose, I agreed… I felt there was nothing else I could do short of getting them illegially, which I really didn’t want to do.

    Three compounding pharmacies later, my doctor gave up on Minocin. Either the pharmacy didn’t carry the Watson brand, or they just didn’t compound Minocin at all! However, as luck would have it, they DO compound Doxycycline! As you can imagine I was very pleased when I receive the phone call from my doctor’s office saying that I would be starting on 10 mg/Doxycycline, and to follow up with the compouding pharmacy with my billing information. Although I’ve somewhat given up hope at this point (I’m really starting to feel like perhaps AP won’t work for me), I’m pleased from the perspective that I’ve heard from several people who can’t tollerate Mino go on to do extremely well with Doxy, and it’s nice that I’m getting them in 10 mg capsules, as I can better control my “ramp up” when the time comes. The compounding pharmacy was extremely helpful- they told me I could choose my fillers (I just told them to use a filler that would not impact the effectiveness of the drug). My next question was who did the powder come from- I believe it’s a company called Midisca…?

    Since I know NOTHING about Doxy, I’m reaching out to all the subject matter experts in this arena… Do I take it the the same way I take Minocin? Is the ramp up process the same based on how I’m feeling? I’m assuming I still take it on an empty stomach (I’ve heard it’s not as strong as Minocin)… Any informatiom about Doxy would be greately appreciated!

    #369285
    JohnnyMax
    Participant

    @Woods1977 wrote:

    ***UPDATE***
    August 15, 2013
    Either someone is looking out for me or I’m just really lucky- I’ll let you be the judge.

    As most of you know I’ve developed an extreme sensitivity to Minocycline. The last three times I’ve taken the medication I’ve experienced flu like symptoms that put me in bed- I honestly don’t remember ever feeling so ill in my life. I don’t know if it’s allergy related, or just a matter of it working “too well”, but regardless, my body just can’t tollerate it anymore.

    When sharing this news with my doctor he still didn’t want to take me off the Minocin, and insisted that I pull back on the dose to 50 mg/wk. I couldn’t even tollerate this dose, once again, flu like symptoms that put me to bed. Went back to doctor again, explained what happened, but was still insistant on me continuing with the Minocin, primarily due to my most recent labs. My June lab results showed a 22 point drop in my RH factor, while my Anti-CCP dropped 1.6 points. Even during the time when I was feeling very well on AP, my labs NEVER improved, infact they just continued to get worse. Unfortunately my once stable inflamation levels are now at a 40, hence why I’m feeling so bad…

    Taking everything into consideration, doc was pleased with my labs, however “more concerned about how the patient is feeling”.. but still wasn’t ready to give up on the Minocin, so he insisted that we go down to 10 mg/wk, then slowly ramp back up. In order to get 10 mg capsules one would need to make their own or go through a compounding pharmacy. Although I was extremely reluctant to try the Minocin again at ANY dose, I agreed… I felt there was nothing else I could do short of getting them illegially, which I really didn’t want to do.

    Three compounding pharmacies later, my doctor gave up on Minocin. Either the pharmacy didn’t carry the Watson brand, or they just didn’t compound Minocin at all! However, as luck would have it, they DO compound Doxycycline! As you can imagine I was very pleased when I receive the phone call from my doctor’s office saying that I would be starting on 10 mg/Doxycycline, and to follow up with the compouding pharmacy with my billing information. Although I’ve somewhat given up hope at this point (I’m really starting to feel like perhaps AP won’t work for me), I’m pleased from the perspective that I’ve heard from several people who can’t tollerate Mino go on to do extremely well with Doxy, and it’s nice that I’m getting them in 10 mg capsules, as I can better control my “ramp up” when the time comes. The compounding pharmacy was extremely helpful- they told me I could choose my fillers (I just told them to use a filler that would not impact the effectiveness of the drug). My next question was who did the powder come from- I believe it’s a company called Midisca…?

    Since I know NOTHING about Doxy, I’m reaching out to all the subject matter experts in this arena… Do I take it the the same way I take Minocin? Is the ramp up process the same based on how I’m feeling? I’m assuming I still take it on an empty stomach (I’ve heard it’s not as strong as Minocin)… Any informatiom about Doxy would be greately appreciated!

    Hi,

    Glad you test are improving, that is the first step to recovery.

    I think it would be best you ask your doctor how to take it, especially considering your past issues with the Minocycline. He should specify that on the script with all the other relevant information. Personally I doubt it will make any difference whichever way you take it, since 10mg is doubtful to have any impact on your RA, that is unless you are allergic to it. I think a better idea would have been to have an allergist/immunologist do a patch test with the mino & doxy, to see if you are susceptible to just the mino or to the entire tetracycline family. 💡

    PS… Has your doctor discussed with you the possibility of doing a series of IV’s, or have you already done that?

    #369286
    Woods1977
    Participant

    Hey there JohnnyMax…

    Since I began AP treatment less than 1 year out from my initial RA diagnosis, he didn

    #369287
    PhilC
    Participant

    Here is something for your consideration…

    Since 25 mg of doxy or mino is the lowest dose Dr. Brown used, I am concerned that using a lower dose may be counterproductive. If you are very unlucky, it could even be harmful (think antibiotic resistance). Now, I am not saying that something bad will definitely happen, only that you may be taking a risk by using a doxycycline dose of 10 mg, one which may be unnecessary. You’ll be deviating significantly from a protocol that has been used on many patients, thereby turning it into an experimental protocol.

    From the “Historical Protocol”:

    If the medication tends to aggravate the condition, it is spaced differently, maybe to once a week or twice a week, and gradually increased to the M-W-F dosage. Some patients are so highly sensitized to drugs that they can only tolerate minocycline or doxycycline 25-50 mg. once every two weeks or even once a month, but with continued titration of the dosage, it is possible to work up to the optimum standard dosage of minocycline or doxycycline 100 mg. once or twice daily, Monday, Wednesday and Friday without flaring the disease.

    See: Severe or Long-standing Disease

    Phil

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

    #369288
    Woods1977
    Participant

    @PhilC wrote:

    Here is something for your consideration…

    Since 25 mg of doxy or mino is the lowest dose Dr. Brown used, I am concerned that using a lower dose may be counterproductive. If you are very unlucky, it could even be harmful (think antibiotic resistance). Now, I am not saying that something bad will definitely happen, only that you may be taking a risk by using a doxycycline dose of 10 mg, one which may be unnecessary. You’ll be deviating significantly from a protocol that has been used on many patients, thereby turning it into an experimental protocol.

    From the “Historical Protocol”:

    If the medication tends to aggravate the condition, it is spaced differently, maybe to once a week or twice a week, and gradually increased to the M-W-F dosage. Some patients are so highly sensitized to drugs that they can only tolerate minocycline or doxycycline 25-50 mg. once every two weeks or even once a month, but with continued titration of the dosage, it is possible to work up to the optimum standard dosage of minocycline or doxycycline 100 mg. once or twice daily, Monday, Wednesday and Friday without flaring the disease.

    See: Severe or Long-standing Disease

    Phil

    Thanks Phil…
    To your point, I was actually considering more than 10 mg of Doxy to begin. I’ll have my script this upcoming Monday, so it will be exactly 2 weeks since I’ve had any antibiotic, which is a nice little wash out period. Since I have 10 mg capsules, I’m going to start with 30 mg of Doxy 1/weekly to see how I do. If I find I can tollerate it, I’ll slowly ramp up the dose from there.

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