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» LymeNet Flash » Questions and Discussion » Medical Questions » So far so good on Mino

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Author Topic: So far so good on Mino
Paul Mall
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Dont wanna ginx it but so far the switch from doxy to mino has been with minimal side effects

only on the second day though so who knows. not thinking I will have any side effects

Paul

Posts: 925 | From Connecticut | Registered: Aug 2010  |  IP: Logged | Report this post to a Moderator
Paul Mall
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brain fog has been pretty steady. I think I am better when I first wake up and then brain fog sets in the longer I am awake

[Smile]

Paul

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Lymetoo
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Day Four is the typical herx day for a new drug. Hope it continues to do well for you. If you herx, that is good too!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Paul Mall
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if I feel slight pressure in the ear but nothing too noticable is this a warning sign? because I got a bit of this with the doxy too...

but I figure if it was an issue it would at least become a little more uncomfortable?

and yea the herx would be ok as long as I can recognize it as a herx.

thats why this site is great because you can bet I will be asking everyone everytime something new happens [Wink]

Paul

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TxLymie
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I've been on mino for 5 months now and it has helped me tremendously!

What dose are you on? They wanted me on 200mg/day but I did have terrible nausea on that so I went down to 100mg per day. It seems to be working.

I tried to get off abx for about a week and started feeling bad again so I'm back on.

--------------------
TxLymie
IgG-Negative
IgM - Postive bands 23 and 41

Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori

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bcaring
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I noticed balance isssues right away and didn't think I would be able to continue. Made it through what I think was a herx (I never have really felt confident about saying that I have had a herx). I am almost at my 1 month point and feel is is helping. I am also taking Doryx and Tindamax.
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Mariski
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Lymetoo,

Thank you for your comment about herx's on the fourth day.

I am on my fourth day of mino and am completely exhausted and dizzy.

The first three days I felt good in the morning and then collapsed with exhaustion around 2:00 p.m. Today I have been collapsed since the morning.

It is a strange feeling. I am not just tired. I feel like I have been hit on the top of the head with a large hammer. There is some sort of vibration or agitation inside my body that I don't normally have.

On the positive side, however, my incredibly painful headaches are greatly diminished.

I am hoping that it will be all good from here!!

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Paul Mall
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I am taking 100 mg twice a day with Hyroxychloroquine

first 3 days have been ok.. with brain fog and like MARISKI I am good in the morning then crash with exhaustion later in the day...

day 4 is tomorrow so lets see how that goes

Paul

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sixgoofykids
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Agreed, day 4 is the big day!

--------------------
sixgoofykids.blogspot.com

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Keebler
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-
Don't allow your body to crash, if at all possible. Get horizontal as soon as you get a drift of the need. Better yet, schedule rest periods to avert energy problems.

Be sure your adrenal support is on board, as well as keeping up with liver support and sublingual B-6 to help tolerate the mino. Glad to hear you are doing well with it, overall. Rest not just when your body tells you to do so, but in advance, even on a schedule.
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Paul Mall
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@Keebler... I been taking naps in the afternoon when I get real tired and it makes me feel a lot better.

I am definitely not stressing myself

I think you should right a book on lyme treatment Keeb

Paul

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Keebler
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-
Words are so hard to interpret.

When you said: " . . . crash with exhaustion later in the day..."

I interpret deep fatigue.

When you say: " . . . I am definitely not stressing myself." I get a different message.

So "crashing" and "exhaustion" are clearly relative. Glad to hear that you are not stressing yourself, though.

As for a book, hey, I just try to help others NOT land where I am. I am not a success but have learned from failures so that much can help others. Everything I pass along is something from another source. I just recycle.

I am so very glad mino is working for you. I so wanted that in my case. Someday we may know why some do great with it so that all can.

I hope you are looking forward to your cruise. Still, be sure to get those GINGER Capsules. I'd get several bottles. Once out on open seas, you'll be able to make big bucks with any extra.

And remember to protect you ears from even moderate sounds as ears are more susceptible to damage when on antibiotics.
-

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Paul Mall
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poor choice of words

I kind of went with what MARISKI was saying about feeling fine in the morning but tired in the afternoon

I think I kind of over did it by saying crash with exhaustion but just feel really tired for no aparent reason...

thanks for pointing that out KEEB

I will look into getting some GINGER Capsules for the cruise

Paul


Paul

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Mariski
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It is always difficult to know what to expect with a new ABX combo.

And, frankly, I didn't expect much of a reaction from minocycline since I have taken it before.

However, apparently things are different when one has lyme!!

I feel better today, at least so far. But at least now I will not be surprised if I feel intense exhaustion in the afternoon.

Paul - how are you doing on day 4?

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Keebler
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-
The thing to remember is to alway be kind to the liver, support it, care for it as much as possible. Then, whatever you are doing has a better chance. Same with adrenals. Support helps ensure success.

It's far easier to have support in place to help prevent problems but once they occur, it's much harder to get back to a good place.

While it's good to know what to guard against, from there, once that support and guardianship is steady, it's good to visualize success, feeing its possibility in every cell. Rather than say "this or that is not happening yet" - it's best to say to one's self: balance feels good today.

In fact, when it's going well, I'd even stay off the computer. I'd avoid all educational materials and focus as much as possible on setting a new routine, savoring the positive points and recogonizing the "need to rest" resting (rather than "crashing").

Our brains pick up on the words we use as if that is what we want. Our brains do NOT hear the NOT but see the pictures of the words and eagerly try to make that happen.

I walk with style and grace (and, well, when I don't, "oops") but if I keep telling myself that I trip all the time, it sort of helps to perpetuate that. I'm not saying to lie or try to fake things being better but, when possible, to use positive words.

I'm not doing so great today but the work "great" is not one that my brain is going to use to clobber me. "Crash" is. In fact, that is a word that I never want my brain to hear. Our brains are very literal. On the other hand, exhaustion is a state but no so much a directive term. Still, it's tricky being honest in how we acknowledge were we are without that being a directive to our brain.

With side-effect that are common for a fairly large population but a few lucky ones aren't touched, once the protective measures are in place, if it's going well, I'd just keep shoulders straight and move along. Like a normal person. Trying to instill as much muscle and brain memory into this for what it feels like to be normal, grab those good moments and instill them into your muscle memory.

I wish I could be precise and concise. With a leaf blower going full force outside, my brain will now feel better going to take a rest.

Here's to experiences being as strong and good as possible. Pre-cruise program going just fine, I hope.
-

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Paul Mall
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@Mariski had trouble getting to sleep last night but after waking up today I feel really good... it seems to hit me harder in the afternoon after being up for a while... after sleep I usually feel a lot better

day 4 is good as of now... I may need to update this later today

I did notice back pain flare up in the spine. I sometimes had lower back pain but I feel this back pain could be a herx of some sort. it is different from the normal back pain I sometimes experience... eyes and ears seem to be tollerating it

Paul

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LymeAware
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Keebler -- what a wise and loving suggestion. I appreciate your thoughts, and I find them really helpful. Thank you. I think too often we get caught in the "what symptoms am I having now" without appreciating the moments of peace and the wellness that is in us, despite and through this disease.

Paul: I don't have anything to add, as I'm not taking Mino, but wanted to say that I've enjoyed reading your process, as I'm considering taking it for a few weeks soon. I wish you luck and hope it continues to help!

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Keebler
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-
Paul,

What is your adrenal support? That should help with afternoon endurance (along with a planned nap, rest session, &/or yoga, Tai Chi or meditation session).

Adaptocrine by Apex is the best adrenal formula I've found. A few place on the web carry it but so do many NDs (naturopathic physicians).

I have a long list of adrenal links for more information if you want but, just getting on good adrenal support may be the key for now.

================

http://www.naturalhealthyconcepts.com/adaptocrine-k2-p-endocrine-system.html

Adaptocrine
-

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Paul Mall
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@Keebler I just contacted my ND for the liver support , the Adrenal support and asked him about the B for the nervous system too

I will let you know what he recommends for me.

all I have been doing for the first 3 weeks is Therolac at bedtime and a tall lemon water detox at lunch.. with multi nutrient etc..

thanks

Paul

Posts: 925 | From Connecticut | Registered: Aug 2010  |  IP: Logged | Report this post to a Moderator
   

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