Anybody self-medicating with Minocin?

[itok]

Hi:

New member here.

The Mino protocol seems pretty straight forward. Take one pill Monday, Wednesday, Friday. Low dose pulsing.

Is anybody buying their Minocin online and self-administering?

It does not seem totally necessary to have a doctor to be the “gatekeeper” on this protocol.

[Cheryl F]

While the use of a trained medical professional would always be recommended, there are some countries where the tretracyclines are sold over the counter.  One thing that I would think important would be to have your Liver enzymes (BUN) monitored.  Many experience problems in this area.  One way or another you need to keep tabs on that. 

Also, I would be leary of the online pharmacies that do not require an RX.  I did buy Minocin from Canada, but the pharmacy was very particular about the prescription and documenting who I was and why we were using it. 

Cheryl Ferguson

[lynnie_sydney]

Welcome itok!
I have been taking minocin for 4.5 years presecribed my my GP, who does not know anything about AP, but who judged that I had educated myself and that mino is a relatively benign drug (usually presecribed for acne).  That is one way you could do it. It is good to have annual bloodwork done at least to keep an eye on anything that may need addressing. And you would need to expect a possible worsening of  key blood markers as a normal part of the herxheimer response – and not let yourself or your doc panic about that. It's only temporary.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Goodwife]

My hubby does not have an AP doc, uses our GP  who was openminded to trying this (based on the info and research we gave him).  He does all the routine bloodwork, and hubby has checkup once a year, but other than that we are on our own.   This was not a preference for us, but at the time of dx, we were desperate to get abx started, and the rheumy he was seeing was no help and never responded to our requests for info about AP.  So we took matters into our own hands.  It is difficult to do, however, when you have questions, concerns, or doubts, but we have managed almost 15 mo nths on AP at this point and things are going well.

 

Good Luck

L (hubby SD) – AP 14 months

[richie]

Hi

Hope this is the question on self medicating —-I would think a doctor is needed -to do the following monitor kidneys and liver enzymes —while its true if everything goes real smooth guess a doctor isnt needed –but how many folks have had a completely smooth sailing without any complications or new symtoms etc –not many I,d bet –having a doctor to see perhaps every six months or so sounds like a good investment to me –Guess you arent too sick that you are contemplating going doctorless

richie

[itok]

Some more background.

I'm posting for my wife who has Lyme disease. We believe she got bitten by a tick in spring 2007. After some misdiagnoses she finally tested in late summer and it came back positive.

She was on various antibiotics for 6 months with some improvement. Over the course of treatment she took Amoxicillin, Doxycycline, Mepron, Zithromax. She was never able to tolerate full dose of any of the above – she would herx too much. The “full dose” in Lyme treatment is typically much higher than in RA treatment. Most Lyme specialists like to go very aggressive. I don't know if that's the solution for everybody, as there can be collateral damage and leave the body weakened from excessive herxing.

Then we decided to go the herbal route through a local Naturopath. So currently she is on a herbal protocol consisting of Cat's Claw, Teasel, Goldenseal, Smilax, and Andrographis. The herbs contain compounds that

[Cheryl F]

itok,

I sent you a Personal Message.

Cheryl Ferguson

[Maz]

[user=140]itok[/user] wrote:

Some more background.

Right now her main symptoms are fatigue (I guess she could be termed CFS) and some tightness around the ribs.

Hi Itok,

Just a thought…has your wife been tested for coinfections of Lyme? I am just a Lyme patient, but I understand chest tightness and air hunger can be the result of a babesia coinfection. If this is the case, an anti-protozoal would be needed in addition to antibiotics or any herbals she's using. Not sure your average AP doc could help with this, unless Lyme Literate.

I can equate with the massive herxing your wife experienced on high doses. I'm doing much better on pulsed mino now, athough my Lyme doc is also covering the corners on possible coinfections.

Do hope you find a good doc soon.

Peace, Maz

[Maz]

[user=140]itok[/user] wrote:

Some more background.

Right now her main symptoms are fatigue (I guess she could be termed CFS) and some tightness around the ribs.

Hi Itok,

Just a thought…has your wife been tested for coinfections of Lyme? I am just a Lyme patient, but I understand chest tightness and air hunger can be the result of a babesia coinfection. If this is the case, an anti-protozoal would be needed in addition to antibiotics or any herbals she's using. Not sure your average AP doc could help with this, unless Lyme Literate.

I can equate with the massive herxing your wife experienced on high doses. I'm doing much better on pulsed mino now, athough my Lyme doc is also covering the corners on possible coinfections.

Do hope you find a good doc soon.

Peace, Maz

[itok]

Hi Maz:

Yes my wife tested positive for babesia and bartonella at the start of treatment. After several months on abx, including Mepron/Zith she tested negative for all coinfections.

But we suspect the Babesia is still lingering despite the negative reading. I believe her naturopath is going to add Artemisia to her protocol in a couple of weeks.

What are you taking for your coinfections? I think Mino has effect against Bartonella?

[Maz]

[user=140]itok[/user] wrote:

Hi Maz:

But we suspect the Babesia is still lingering despite the negative reading. I believe her naturopath is going to add Artemisia to her protocol in a couple of weeks.

What are you taking for your coinfections? I think Mino has effect against Bartonella?

Hi Itok,

So far, I've been on the following in different combos:

First, doxy alone prescribed by PCP (too little too late). Then, tetracycline, biaxin, plaquenil (anti-protozoal and cyst buster) and weekly bicillin IM shots prescribed by LLMD. Currently, I'm on mino, biaxin and rifampin.

As far as I know, the tetracyclines have bacteriostatic properties rather than bacteriocidal properties (like the penicillins). The bacteriocidals kill bacteria outright, whereas the bacteriostatics work by penetrating the pathogen and messing with its chemical makeup (described in good detail in the New Arthritis Breakthrough).

You might find this study interesting, as it is a study that sought to illustrate which of the abx worked best on bartonella. It seems that doxy was the least effective. I would think this would mean that mino wouldn't be as effective for this particular coinfection. Although, believe me…I'm no expert…just trying to decipher this study myself. 😉

http://jac.oxfordjournals.org/cgi/content/full/46/5/811

Mepron is an anti-protozoal, but it's possible she needed longer on it. These coinfections are stealth pathogens that are more vulnerable at different points in their life cycles than at others, much like the spirochete, and I would think that testing might even be abrogated once therapy is begun.

Sorry I can't be more specific, Itok. I'm learning as I go, myself.

Does your insurance cover your naturopathic doctor? Amazing if so!!! 😯

Really hope your wife gets some relief soon. This truly is an enigmatic disease and it can feel like one battle after another looking for the ideal mix of meds to kick it. She'll get there, though, and she's one very fortunate woman to have you by her side, supporting her through this.

Peace, Maz

[Dena]

I recommend seeing a doctor on an annual basis and getting blood work to make sure everything is okay.  I found a rheumatologist, called him and asked if he would write the script without going through a lot of testing.  He agreed as the minocycline is not very harmful.  He was not optimistic, but I got the script.  After that, I started following the protocol and eventually found a neurologist who was so impressed with the results that he just keeps writing the script.  However, the RH factor has zoomed back up in the last year, so we are trying to figure out what to do now.  I wouldn't buy minocycline over the counter. Besides, it is cheap, compared to other drugs, so get a script, get a reputable pharmacist to dispense it, and see a doctor annually.

[itok]

Maz:

Thanks for the info. My insurance does not cover the Naturopathic treatment. But he's not too costly compared to the Lyme specialist who does not take insurance either.

Dena:

I agree. I checked around the internet for non-script Wyeth/Lederle Minocin. I ended up at some dubious websites – no idea as to where or how the meds might have originated. I'm have my wife call around a few docs to see if they can give Mino scripts without having to go see them every month.

[Dena]

I believe a doctor needs to be involved, if for nothing other than to order blood tests periodically to make sure everything is going well and to track improvement.

[Dena]

Didn't realize I had already responded.  I see my doctor annually for scripts and analysis of blood work.  If you are at the beginning of treatment, perhaps quarterly would be a good idea for awhile.

[Author]

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