posted
Hi Paul. I took Doxy for quite a while then went to mino. I had to stop the mino due to GI issues(diarrhea) sorry. Maybe TMI. Mino is a good drug though. My husband has had improvement on it.
Posts: 383 | From Ar | Registered: May 2007
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yea I guess according to what I read 50 to 70 percent of women have side effects from it..
hopefully I will tollerate it... we shall see. thanks for the input
anyone else?
Paul
Posts: 925 | From Connecticut | Registered: Aug 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Take good liver support and B-6 to help prevent inner ear side-effects. Have Ginger capsules on hand to offset possible vertigo that can come with the inner ear (vestibular) side-effects of mino.
More about all that here:
Specifically for LYME patients - lots of details about ears and what can help:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
=========================
Here is the range of side-effects that mino can cause. It's also the same range of inner ear effects that lyme and other tick-borne infections can cause. -------------
Antimicrob Agents Chemother. 1975 October; 8(4): 453-456 Copyright � 1975 American Society for Microbiology.
Vestibular Reactions Associated with Minocycline Jay A. Jacobson* and Brenda Daniel
* Bureau of Epidemiology, Center for Disease Control, Atlanta, Georgia 30333_Doctors Hospital, Tucker, Georgia 30084
ABSTRACT
Several recent reports have indicated that minocycline, a drug effective for meningococcal disease prophylaxis, is associated with a high incidence of vestibular side effects.
. . . Vestibular toxicity is by far the most common significant adverse reaction reported for minocycline.
In our study, patients receiving doxycycline experienced significantly more adverse drug reactions than did those who were randomized to receive minocycline.
Although 30% of patients receiving minocycline, 100 mg at bedtime, did report adverse drug reactions, almost all were related to gastrointestinal upset and were mild.
Only four women reported mild vestibular toxicity.
We therefore think that the administration of a single 100-mg capsule of minocycline at bedtime largely overcomes the vestibular toxicity historically associated with this drug. . . .
ANTIVERTIGINOUS ACTION OF B-6 ON EXPERIMENTAL MINOCYLINE-INDUCED VERTIGO IN MAN
[Article in German]
Claussen CF, Claussen E. Neurootologie, Universit�ts-HNO-Klinik W�rzburg.
By means of a former investigation it has been proved equilibriometrically that the application of 7 X 100 mg minocycline may induce a central equilibrium dysregulation of the brainstem type.
It was the purpose of this study to further assure that the minocycline induced brainstem vertigo is due to a destabilization of a supervisory gamma-aminobutyric acid (GABA)ergic loop from the archeocerebellum upon the pontomedullary vestibular regulating pathways.
As it is pharmacologically known that pyridoxine is essential for the synthesis of GABA, an inhibitory CNS neurotransmitter, 2 separate double blind trials on 20 healthy young persons each were carried out after the intake of 7 X 100 mg minocycline during 3 days with and without 7 X 40 mg pyridoxine simultaneously.
These trials were checked against an additional placebo or initial non drug investigation. In all the 40 test persons it could be proved that the amount of vertigo and nausea symptoms was increased significantly due to the application of minocycline only.
However, when combining minocycline with vitamin B 6, the vertigo and nausea symptoms as well as the nystagmus signs from the monaural and the binaural vestibular ocular tests as well as the vestibular spinal signs from the craniocorpography recordings of the stepping and the standing procedures were remarkably reduced.
There were no statistical differences between the initial or placebo trials versus the trials with a combination of minocycline with vitamin B 6.
The same holds for the vestibular vegetative reactions, measured by the simultaneous electrocardiography during the vestibular tests. All the equilibriometric tests applied showed a significant destabilization under the influence of a pure minocycline loading.
UTPMID: 3382463
============================
In addition to the information about how B-6 can help, the first Tinnitus thread above also has details about how liver support can help.
Some do fine on mino, some do fantastic. But, since some don't, it helps to have support measures on board. If needed, have a Plan B.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- So, to have on hand:
* Liver support
* Sublingual B-6
* GINGER CAPSULES
* Someone to drive you if you get dizzy. Be careful walking, too. Avoid overly stimulating situations or environments.
* Hearing protection as ears are more sensitive to damage from lower sounds when on antibiotics. Avoid in-the-ear "pods" -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Paul
Posts: 925 | From Connecticut | Registered: Aug 2010
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Keebler
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posted
- I don't mean to be critical here but just want to cut to the chase. I also am no kind of health professional and I'm sure far from well myself. Still, from what I've studied, from my failures and minor spurts of success I simply offer my opinion.
I would wait until you return from the cruise before beginning anything new. Or - try out mino before - and be able to cancel or postpone your cruise if it causes vertigo. There is a good chance it will. Now, you may be one of the lucky ones but the very real possibility is that it will increase inner ear issues that a cruise will make worse.
For me, mino literally flipped my whole visual field. It also lowered the seizure threshold and the slightest sound would send me flying and grunting. So, I'm more cautious. I tried it several times, with time in between and it always made me bed-ridden.
I would never suggest starting this just before taking a cruise. But also know that I am very sensitive to many drugs, even tiny amounts. Also, with your being a guy, you may have a better chance but some men still get hit hard with mino. (Zithromax can also have a similar effect.)
However, as you still have time to cancel your plans, you could go ahead, get on liver support, start the mino slowly, and see how it goes.
But- if you are treating an early lyme - I would cancel the cruise and stay home doing aggressive treatment. If this is chronic lyme, I would make a different decision with the cruise in mind.
You could take Olive Leaf Extract for the next few weeks and during the cruise. Colloidal Silver would also offer you some protection without the risk of vestibular involvement that could ruin the cruise.
I've done fairly well with just OLE at times.
A very good brand of Colloidal Silver also kept me out of a wheel chair when I could not walk or talk. It saved my life.
--------
About support. Sorry - Nothing you are on constitutes the kind of liver support necessary to have on board BEFORE you begin minocycline.
I also don't see a separate magnesium supplement - the amount is pretty low in the multi-vitamin/mineral combo. You could need up to 1,000 mg a day (to bowel tolerance and then back down).
Where's the Fish Oil ? OmegaBrite is a good one.
I see no mention of Probiotics.
Is your ND lyme literate? Seems very conservative and has not addressed liver support at all. Be sure the ND is ILADS-educated and lyme literate. From the supplements listed, it does not appear as if this is intended for a lyme patient at all.
===========================
Specifically for LYME patients - lots of details about ears and what can help.
3/4 of the way down page one, lots of LIVER SUPPORT LINKS:
** Nutritional Supplements in Disseminated Lyme Disease **
======================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum. Liver support details are included.
A synergistic formula of 6 rainforest botanicals which are traditionally used in South America for syphilis (a type of spirochete bacteria) and other bacterial conditions.* This product was featured in an article by the Health Sciences Institute (see page 4).
=========================
Buhner's book, "Healing Lyme" is also very good.
But, as you need something sure NOW and for your cruise, I would think about Olive Leaf Extract. I've done very well with that.
Even if you take it with antibiotics, it can be very helpful, especially in keeping candida away.
Oh - and for your cruise - you can arrange gluten-free meals, most likely. That will help your endurance.
I do hope you can go on the cruise and that it is wonderful. Take several bottles of GINGER capsules - one for every bag in case you have some lost luggage.
Ginger works better than the Rx for motion comfort (and the Rx options are very toxic to the liver and, oddly, also to the ears).
BOIRON Homeopathics of Tabacum 30 c AND also Cocculus Indicus 6 c -- are also very helpful to keep the inner ear happy in rocky times.
TURMERIC / CURCUMIN is also something very helpful for many reasons. It will help decrease inflammation all around and also help to minimize a herx and also calm the stress response and support adrenal function. -
[ 08-29-2010, 05:32 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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-------------- An Olive Leaf formula (that contains Terminalia chebula):
My ND (naturopathic doctor) recommended MYROLEA B. Most naturopathic doctors and acupuncturists know about the Seven Forest formulas. As this is a combination formula, there are ingredients included to help the body with "clearing heat" and metabolizing toxins.
Myrolea-B (White Tiger) is a simple formulation of highly concentrated extracts from four Chinese herbs and one Western herb.
The Chinese herbs include forsythia and lonicera, two of the key ingredients of Ilex 15 (and the main antiviral ingredients of Yin Qiao Jie Du Pian), thus boosting the dosage of these essential ingredients.
Myrolea-B also contains the antiviral agents scute (huangqin) and terminalia (hezi). The Western herb in this formulation is olive leaf, which is one of the primary anti-viral herbs derived from the European tradition.
SHUANGHUANGLIAN: Potent Anti-Infection Combination of Lonicera, Forsythia, and Scute - by Subhuti Dharmananda, Ph.D., Director, Institute for Traditional Medicine - 2003
Shuanghuanglian (SHL for short) is a modern formula that was devised in the 1960s to treat a variety of infections. It is comprised of the alcohol-water extracts of three herbs: lonicera (shuanghua, often called jinyinhua), scute (huangqin), and forsythia (lianqiao). . . .
. . . One of the early preparations of the SHL was a tablet made of equal proportions of the extracts of each herb. This was used to treat leptospirosis, a disorder caused by a spirochete bacteria, related to the organism that causes Lyme disease.
Leptospirosis causes initial symptoms of fever and chills, headache, and muscle ache (especially in the shoulders); these are consistent with "flu-like" symptoms described for the onset of many acute infections.
In a 1971 report, the formula was described as being made in 500 mg tablets derived from 3.7 grams of the crude herbs, and being administered in doses of 10-15 tablets (thus, equivalent to the extract of 37-55 grams of herbs) every 6 hours (1), a very high dosage.
. . . Recently, Shuanghuanglian has been applied successfully to treatment of Coxsackie B3,
. . . The general indications for SHL . . . are "relieving the exterior syndrome, clearing away heat and toxic material," and its indications are "treatment of fever, cough, and sore throat that arise from wind-heat syndrome."
It is said to have "a good action in treating upper respiratory tract infection, tonsillitis, laryngopharyngitis, pneumonia, acute enteritis, viral dysentery, etc., when caused by virus or bacterial infection."
- full article at link above.
===================
Detail from two of the most reputable sources of OLE:
Die-off effects -- Olive leaf use causes the death of microbes. The liver, kidneys, intestines and skin are therefore tested to their limits, to deal with, and remove them. This causes Herxheimers Reaction, which can have a variety of symptoms, but basically makes one feel ill or under the weather due to a treatment's effect upon the body.
Thus, "die-off," referred to in medicine as the "Herxheimer reaction," occurs when the olive leaf components kills large numbers of harmful germs rather quickly. Then, the patient's membranes absorb toxic products from these dead microorganisms. . . .
See details at link for:
* Safety Precautions and * Known Drug Interactions
SEAGATE Olive Leaf Extract - also see their menu for all their OLE products, including nasal spray, personal spray, etc.
Excerpt:
Side Effects: Olive leaves have been used safely for thousands of years. The only known side-effect is the possibility of a Herxheimer reaction, an allergic response caused by the rapid die-off of fungi that release toxins which may temporarily cause a brief allergic reaction, lasting for several days.
============================
PROBIOTICS are still needed with OLE - but take several hours away from both OLE and from Rx. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- In above posts, I did not touch on the Hydroxychloroquine. So, you are obviously treating for Babesia. I assume you are not on mepron or you might have said. But, if so (or when so) liver support has to be done a little differently when on mepron.
I've only done artemisinin for babesia so I can't comment on your babesia treatment.
My concern revolves mostly around minocycline management and how to make your cruise an absolutely magnificent experience.
Mg is anti-inflammatory, anti-histamine and blocks the "cholesterol pathway".
B6 has more functions than any other vitamin. For one...it controls sodium levels. It has to convert to its active form in the liver. If one is missing the enzyme for conversion...problem.
. . .
B6 (sublingual)- is the active form so the liver doesn't have to do the converting, Mg citrate, L-theanine, and OmegaBrite (dramatic help in dealing with the brain inflammation).
. . .
Stay away from artificial colors...read ingredients. Watch annetto! It can trigger inflammation and it gives a "yellow" color to foods.
B6 sublingual is made by Source Naturals and is easy to take (dissolves under the tongue). It only works for a few hours though.
(Marnie) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Even though they are similar meds, you could still herx when you switch.
As Keebler said, I would wait until you get back from your trip to make the change. Unless you are willing to cancel or go feeling sick.
My daughter always feels better on doxy than mino, so clearly, they are doing different things.
Posts: 984 | From US | Registered: Dec 2007
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posted
Hi Paul.....I started on Minocycline (200 mg Per Day)and Cefdinir (600mg Per Day)on July 20th after 7 months on Hydroxychloroquine/Ampicillin/ Clarithromycin....The Minocycline/Cefdinir has been a little more challening than the previous antibiotic combo I was on especially regarding Headaches/Digestive Tract Issues/Dental Pain Issues and Fatique....Everyone reacts a little differently to the meds so it might not be the same for you.....If at all possible, I would consider holding off on starting the Minocycline until after your cruise.....hope this info helps..."Dance, they say....Life is ony for the moment."....
Posts: 59 | From NH, USA | Registered: Oct 2004
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when I was first diagnosed I was only on doxycycline because my PCP was willing to give me 3 weeks worth... my LLDO prefers the MINO in his treatment... so he put me on hydrocychloroquine and said as soon as the doxy is gone switch to the mino...
I have not been on the doxy very long
the only thing is my LLDO feels mino will treat me better than doxy as far as sun exposure.
I do have a chronic case but I am only in the first 2 weeks of treatment
I will discuss this with him again before I go and get his thoughts
I will be able to try the mino for a few weeks prior to leaving to see how I react. I will email the doctor and see what he feels about this new information I have learned
I do not want to give the disease any breaks and I would like to hit it rather aggresively even though it is the chronic form
I have been handling the symptoms rather well
thanks for all the great advise and I will email the doctor now with my concerns.
thanks
Paul
Posts: 925 | From Connecticut | Registered: Aug 2010
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posted
I forgot about the sun issue with doxy. I would not take my daughter on a cruise if she was taking doxy. Too much risk of a bad sunburn.
So, I think the mino is a good choice. Hopefully, you will be one who doesn't herx much or will be back home when it happens.
Posts: 984 | From US | Registered: Dec 2007
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I started my treatments with minocycline and had psych symptoms like depression(different for me). Stopped it within a few days, and within hours the depression resolved. But, everyone is different.
I took doxy afterwards for about 8 months, and had no problems. 14k
Posts: 51 | From Boston, Ma. | Registered: May 2009
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posted
I tried Mino and had allot of difficulty with it. Actually, that is the only drug I couldn't tolerate.
I became very spacey and lightheaded, a very disconnected feeling, but not in a herx type of way (if that makes sense). Either way, I stopped taking it and read about how much difficulty a majority of women seem to have with it.
I wish you luck Paul, I did hear it penetrates the blood brain barrier well.
Posts: 157 | From connecticut | Registered: Feb 2007
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I wish u luck w/mino. I wish I could have stuck w/it Dizziness and balance were intolerable. But at least I could go outside.
Posts: 146 | From Vancouver, BC | Registered: Dec 2009
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