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» LymeNet Flash » Questions and Discussion » Medical Questions » Starting Minocycline- any tips?

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Author Topic: Starting Minocycline- any tips?
VV
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Any advice out there from Mino experience?

I shouldn't take with calcium/calcium rich foods, correct?

Anything else to watch out for?

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GretaM
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Hi VV [Smile]

Yay! Mino! One of my faves.

Yes, be sure to take 4 hours away from calcium foods or supps, magnesium food or supps. Basically any mineral or vitamin supps. This includes antacids and iron supps.

I took my mino on an empty stomach. Found it to be very gentle, and it gave me comfort knowing I was getting maximum absorption.

Others need it with food. You'll find your groove.

Has side effect: Dizziness vertigo hearing loss. If you have this, it is not likely a herx, but a side effect. Must stop mino if you have this side effect. The damage can be perm if you keep going.

Good luck!

Also, I noticed increase in full body twitching and spasms about day three to day four.

Seriously gets into the cns.

Also during flare. We seem similar is our lyme symptoms...you may have the full body twitching/body waves around day 3-4 also.

Just something to watch for. Mine lasted about and hour to maybe three hours each time and it was like being in the twilight zone. No control no speaking.

But worth it. Clarity will come!

Best [Smile]

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VV
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Thanks Greta [Smile]

I'm starting slow (50mg every other day) and taking it with food (looking out for cal/mag etc). Thanks for pointing out no iron too, as I do take chlorella (which is quite high in iron).

I will work up to 100mg 2x a day.

I'm being very careful about herxing as I have had somewhat catastrophic reactions in the past.

2 different LLMDS have suggested the slow route so I'm going with it.

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GretaM
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Yes awesome plan, VV.

Yes, forgot to mention chlorella and activated charcoal within 4 hours of abx are no no also.

Recently found out from my doc that chlorella and activated charcoal isn't good with probiotics either, as they bind to them to pull them from the body.

The things we learn on this journey...geesh.

Yes, slow is probably better, especially as your neurolyme mimics ALS and MS like me.

Glad you've got some good LL's in your corner. [Smile]

Take care. Keep me posted. I am fascinated to know if it helps you.

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Abxnomore
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Will you be taking a cyst buster such as tindamax/tinidazole or flagyl with it? It's generally recommended.
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VV
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I'll be using plaquenil after being on the mino for a bit. If I can handle it, I would move on to Tinidazole in the future as from what I have read that sounds like one of the best drugs for Lyme (hits all forms).
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VV
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I'm also on some herbs and essential oils, so hopefully they may have some action against cysts (keeping my fingers crossed).
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LuluBelle
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I sent you a PM about a clinic in Colorado.

Have you visited them ?

Did they start you on this protocol ?

--------------------
You won't know how sick I was until you see me when I'm well !

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VV
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No, I haven't been to Colorado. I live on the east coast, but wanted to keep my options open in case I need to take a leap into something. I've felt like I've been on my last legs before.
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Sammi
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Mino does not cause the horrible sun-sensitivity that Doxy does for me. Use extreme caution in the sun until you know how it affects you.

It can cause dizziness. I had this side effect, but it went away in a couple of weeks.

Good luck!

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VV
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So, I'm up to 100mg a day. This is my 3rd week on the mino.

I don't seem to notice any effect yet above and beyond the usual Lyme fluctuations.

Any advice?

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OtterJ
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Make sure you take your probiotic.
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GretaM
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VV-are you going to 200 day?
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VV
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Greta, that's my goal.
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Marnie
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Be careful...very...with what you add...herbs, essential oils, etc.

There can be more interplay than you maybe aware of.

Please run ALL your supplements by your doctor and pharmacist.

***NOTE...IF you need to...skip to the LAST sentences in this post beginning with "so it appears"***

A number of autoimmune diseases are thought to be triggered by infections, but

certain antibiotics used to treat those infections

may also contribute to that trigger (autoimmune).

There maybe genetic predispositions that come into play if Mino/other abx. trigger autoimmunity.

"Clinical and epidemiologic evidence as well as data from experimental animals demonstrate that a

*tendency* to develop autoimmune disease is inherited.

This tendency may be large or small depending on the disease

but, in general, close relatives are more likely to develop the same or a related autoimmune disease.

A number or genes have been implicated in causing autoimmune disease, primarily genes related to the human major histocompatibility complex called HLA."

http://autoimmune.pathology.jhmi.edu/faqs.cfm

"The other aspect we have been interested in is

***why only certain individuals

develop lupus

while on minocycline.***

We have been able to start studying the genetic factors that put those individuals at risk.

So far we have found that there are associations with certain genes that regulate immunity called HLA antigens.

Antigens = proteins.

All individuals with lupus on minocycline had a particular pattern of HLA antigens.

It may be possible that there are even closer associations with linked genes that we are interested in studying further, as this may shed light on the type of genes likely to be involved in SLE in general."

http://www.lupus-support.org.uk/Mino.htm


More specificially...HLA-DR4...

DRB1*04:01 is linked to lyme disease.

http://en.wikipedia.org/wiki/HLA-DR4

See full specific list of subsets of HLA-DR4 in above link.

http://www.ncbi.nlm.nih.gov/pubmed/9685265 Pay close attention to the last sentence.

OspA contains tryptophan which reacts with the above.

Since Mino looks to downregulate HLA-DR4, theoretically it should help.

HLA-DR4 (DR4) is an HLA-DR serotype that recognizes the DRB1*04 gene products.

"It was reported a few years ago, that certain constellations of the Human Leucocytes Antigen (HLA) i.e. certain immunologic markers on all those body cells containing nuclei,

can lead to a resistance to the usual antibiotic therapy against Borrelia spirochetes

or even to a lack of specific antibody production.

With the presence of the HLA-DR (B)-1 Subtype *0101,*0102,*0104, *0105

the production of antibodies against Borrelia spirochetes would be prevented

and with the presence of HLA-DR B1 *0101, *1501,

*0401

and *0402 a ***resistance to antibiotics*** would result.

On the other hand, still other HLA-subtypes (HLA-DR B1 *0701, *0703, *0704) can cause an especially strong immune reaction towards Borrelia surface protein antigens.

However, newer studies have moderated these assertions and called for more scientific research.

Nevertheless, these above-mentioned genetic parameters can still give an indication of

possible

reasons for

therapy resistance

or for a total lack of antibodies,
as well as

for an extreme build-up of antibodies against Borrelia spirochete."

http://www.borreliose-nachrichten.de/wp-content/uploads/2012/03/Chronic_persistent_Lyme-Disease_or_chronic_Borreliosis.pdf


So, it appears...

HLA-DR B1 0401 = resistance to antibiotics to clear lyme.

If you have that specific gene type, you might need to look at alternative therapies.

If you DON'T have that gene type, Mino maybe very effective - esp. when combined with Diflucan/tini.

To the best of my ability.

[ 04-14-2014, 08:19 PM: Message edited by: Marnie ]

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Nancy L
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My LLMD said not to take mino with dairy, minerals or antioxidants (like C). I asked her about my regular supplements including knotweed, and she said they were all ok except chlorella. Must take it far far away from mino.

She said the bottle will have instruction to take away from food, but to disregard that and take with food.

The Rite-Aid prescription sheet said that nausea, lightheadedness, and dizziness are common side effects, but to notify your doctor if these continue or worsen.

Just read the cautions, there are side effects that are more dangerous that you need to stop treatment and get help for (they say rare).

I get lightheaded and mentally spacy if I take mino in the morning. I have to take in the evening, tho not lie down for at least 10 min after taking, it says.

In the evening I am fine to take it, and in the late morning ok if I do not have to walk around much or drive the first few hours after taking.

I hope the spacy feeling & lightheadedness in the morning will get better, just been taking a few days now.

Mino crosses the blood-brain barrier and makes you less sun-sensitive than doxy the doc said, and you can take fewer mg than doxy for it to work.

From my reading, it does cause (like doxy) Bb to throw off some blebs, so you need to take or pulse a bleb killer like tinidazole or artemisinin with mino.

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VV
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So,

I'm up to 200mg but I don't see any clear indicators, positive or negative (herx, improvement, side effects etc.).

What is the highest dose for this med?
Does anyone go higher than 200mg?

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Abxnomore
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200 two times a day is usually used along with a cyst buster and another abx.
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VV
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I have Plaquenil but I haven't taken any.

I asked for Tinidazole but no-one wants to give me that yet.

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GretaM
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Tinidazole: the one abx I feel great on. Lyme-great, not healthy-person great.

3 days into my tindi pulses, I feel unburdened.

Hope when you try tindi, it feels good for you too VV.

[group hug]

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Abxnomore
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Is plaquenil still being widely used? Haven't heard it being used in years. Have they told you about the side effects and are you getting your eyes checked?

If your LLMD won't give you Tini or flagyl, it might be time to find a new one.

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VV
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Plaquenil is still common as a cyst buster and anti-malarial. I think it is some kind of anti-inflammatory too.
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GretaM
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Hi VV,

Is the mino helping you?

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VV
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I'm not sure. I suppose I'll give it at least 3 months to see if it makes a dent in anything.
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VV
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I went back down to 50mg 2x a day.

I've heard some people say they get improvement with low and slow.

Has anyone made progress on this dose?

Scared of herxing given my already poor state.

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VV
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Feeling pretty terrible.

How long does one continue on an antibiotic without symptom improvement (only worsening)?

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