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Update on symptoms: Would you begin MINO or wait?

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Posted 10/8/2016 1:32 PM (GMT 0)
Right now I don't have a lot of pain at all. Only twinges in hands and as of last week the very mild long bone pain on shins and heavy feeling in legs. Better today. I think because I have learned a bit on this board, and had sensations in bottom of feet, I figured 'co-infection'. LLMD only prescribed mino. as of right now. I'm a little hesitant to start it as I don't do well with abx. He also only did it based on an email I sent him with new symptoms. I am seeing him in person in a few weeks to go over recent CBC and IgenX (which isn't in yet).

I may try and wait. I am actually away for weekend, outside of Manhattan, and feel much better today.

My questions:
1. Could this pain be change in seasons? Or do you definitely think it's Bart?
2. Would you start Mino today and just try and kill this or do herbs? [I'm so slow on herbs but prefer not to put abx in my body].

Thanks and sorry for asking the same question more than once.
Posted 10/8/2016 1:57 PM (GMT 0)
Huddie,
The choice has to be yours.

However, if you choose to use the Mino (which crosses the blood-brain barrier well, by the way), I would encourage to at least wait until you are back home. No one can say you will herx for sure, but no one likes to start herxing when away for the weekend.
Posted 10/8/2016 2:01 PM (GMT 0)
Trav,

Thank you. Very good advice. Especially since I feel so good today. No pain at all and even said to my husband "Let's go into town and see a movie and have lunch while I feel so good." It could change tomorrow. I'm leaning towards waiting until all my tests are in and I'm seeing him in person. Unless you experts think that is not a good idea. So far I have no neuro issues that I know of. So when you say crosses blood/brain barrier are you saying that toxins from brain are released as well? Are all parts of lyme automatically in our brain (meaning Lyme plus all cos.)?

What did you do for bart? I know you have never taken herbs. I want to be like you.

As always, thank you.
Posted 10/8/2016 2:03 PM (GMT 0)
Trav,

I just noticed that you had Asymptomatic Babs/Bart. First of all you are SO LUCKY! Second, how did you ever figure out that you have/had them?
Posted 10/8/2016 2:09 PM (GMT 0)
no offense meant, but i wouldnt say "you are so lucky" to someone like Trav who has had this disease for sooooo long....
Posted 10/8/2016 2:16 PM (GMT 0)
DB,

I apologize. To Trav, and to everyone else. I didn't choose my words carefully. I would never intentionally offend anyone. I try to be positive and encouraging with my words. I was trying to say that if you have to have Babs/Bart, better to not have the symptoms. It came out wrong. Very sorry.
Posted 10/8/2016 2:57 PM (GMT 0)
Awwww Huddie,

I know in my heart that Traveler read between the lines. You were only expressing out loud how you wished that your condition was asymptomatic. It is scary and confusing out there in this parallel universe that we now live in. What makes it even more difficult is the occasional glimpse at what life was BL(Before Lyme).

You are trying so hard to find the right path to wellness. Wishing you continued positivity.

Traveller notices how people respond in situations such as what you just experienced. I'm sure you passed with flying colours. Mean and inconsiderate is not part of your makeup. You are an honest and kind person. It is written all over your posts.

Right from the start, I noticed how so very important Traveler is to this Community. She is our Great Pumbaa, the fiercest of all warriors, our protector, our guide. She keeps us safe and leads us towards the healing light. We are soooo lucky that Traveler is willing to Share her time and experience with us. And we are sooooo lucky to feel comfortable enough to express our thoughts without judgement.

Huddie, may I echo Travelers thoughts in saying:"Rejoice in having a good day, go see that movie, enjoy the restaurant and have a great weekend." When you come back, you can look at everything again with a clear mind and a rested brain.

You will know what to do.

Family time my friend.

Love to you and yours xo

Buzz🙋🏻
Posted 10/8/2016 3:11 PM (GMT 0)
Huddie, my personal opinion is to give a protocol some time. I would stay on a plan for 6 months to see how I felt. Nothing gets better fast with lyme. And you really have to give all the protocols, whether abx or herbs or combo some time to work.

You are so new on your protocol and I remember being in a frantic learning position and wanting to be well. But this can't be rushed.

Slow and steady beats this disease!!

Also, lyme, babs and bart have a lot of overlapping symptoms. I have no idea if those feelings of glass in the bottom of my feet was bart or lyme. I do know that it went away as I got further into my lyme treatment.

My feet feeling like there was glass in them -- did not arrive before I took herbs. It came in the middle of my treatment. So, just because you are on treatment does not mean you won't get a new symptom.

I always thought that while I was treating with herbs that I was killing communities of lyme. As I killed them some would escape and try and find a new hiding place. That was why I would get a new symptom I had never had before. I just kept on killing until they had no more places to hide.

Give your lyme treatment some time to work and see if you don't get better.

Post Edited (PeteZa) : 10/8/2016 9:14:34 AM (GMT-6)

Posted 10/8/2016 3:20 PM (GMT 0)
Ha ha ha, well I wasn't so lucky because of having asymptomatic infections because they were allowed to continue on doing their thing, getting further entrenched in my body while I was happily think I was so lucky to only have Lyme.

And that was only when I was reinfected. The first time (40 years worth) I had most of the symptoms listed for most of the tick borne infections.

I also wanted to point out the typo - you said I've never done herbs. Lol. I healed with herbs only for those that don't already know, and I did use abx (Mino actually) and ended up A LOT worse than I was before I started treatment, which is why I determined abx was not the way for me to go.

But, I also want to clarify, even though I did horrible with Mino, it surely doesn't mean it's not a good abx for these infections.
Posted 10/8/2016 3:22 PM (GMT 0)
Buzz,

Giant heartfelt hug to you my friend. Thank you for the kind words and the understanding. I am with you 100% on Trav being our Grand Poobah, Lyme expert, and in house counsel; all while being kind, supportive and non-judgemental. Not sure where I would be without Trav or any of you. I do try to be kind with everyone, as I know all of you do too. I will heed the advice and enjoy the weekend.

Daisies and Peteza,

Thank you. I know you have tried it both ways. My body and soul want to do herbs only. Because I'm so slow I was thinking I may have to do abx. Now that I have read what you and Peteza have to say I think I'll wait. I am definitely still learning and had no idea that lyme/cos can have similar symptoms and I didn't know that more symptoms can come out with herbs. Had no idea. My belief was that the more you do the LESS symptoms you have and that all symptoms then go away. This is very helpful you guys.

Slow and steady. I will become the tortoise!
Posted 10/8/2016 3:24 PM (GMT 0)

PeteZa said...


.............llYou are so new on your protocol and I remember being in a frantic learning position and wanting to be well. But this can't be rushed.

Slow and steady beats this disease!! .........ll

.


Frantic learning position. I like that. So true. It can't be rushed. And it does get better.
Posted 10/8/2016 3:29 PM (GMT 0)
Trav,

Sorry for the typo. I know you do herbs only. I didn't know you tried mino. Good to know.

I also know you have been through hell and back with all these infections. I'm so sorry for that. It is said that the best healers had to heal. I think it is why you have helped change the lives of so many and never give up on us. I am so grateful for all that you do.

Yes love 'frantic learning position' - I'll try to stay out of FLP mode Peteza!

Thanks everyone and hope you have a good weekend.
Posted 10/8/2016 3:31 PM (GMT 0)
Sorry, I was held up by our housemate - he's having the roughest week since his wife passed away. Her birthday was 2 days ago, and she passed one year ago tomorrow and he needed to talk. I knew you would have good support on here, Huddie, so I made a choice to talk with him for a bit. And I can see that you had the good support that I know this community is capable of giving!!

And yes, I most definitely understand - and I thought the same way before I experienced it myself. I thought, well at least they were asymptomatic when the symptoms did hit me (during Lyme treatment, as usual) - but it wasn't until I tried starting treatment for Bart that I realized that those dirty little buggers were inside doing their dirty deeds anyway!!
Posted 10/8/2016 3:33 PM (GMT 0)
New and odd symptoms came out on me all the time. A twinge here, a pain there, do I have a fever? All annoying symptoms and it literally became a joke in our house.

What is lyme doing to me now?

Symptoms do fall off the list and new ones can arrive. But the new ones may only last a couple of weeks, unlike the symptoms you originally got with lyme.

And to put the icing on this un-cake like walk - we are all different. How and why lyme affected me is not necessarily going to be what happens to you.

I do not think I have seen 2 people with exactly the same symptoms yet.

The healing process of lyme is a great self body experience. You learn about your body. What it likes, what it doesn't and more than likely where your weak spots are - lyme loves those. We end up with this learning process whether we want it or not.....
Posted 10/8/2016 3:36 PM (GMT 0)
Trav,

Now your halo is just leading the way. Who needs electricity with you around? So when you aren't helping all of us you are off helping others in real life. Makes perfect sense and your friend is lucky to seek shelter and comfort from such a wonderful healer. He probably did need to talk. I talk with my mother all the time about my brother and his passing. I feel it helps us heal and keeps his memory alive at the same time. Our culture is odd with death. My mom says no one ever bring him up. They don't know what to say so no one says anything and she likes talking about him. I'm sure your friend will leave with a lighter heart for having spent time with you.
Posted 10/8/2016 3:42 PM (GMT 0)
Peteza,

Thanks for updating me. Feel like I learned something very, very important today. I honestly believed, until your post, that symptoms would decrease not increase. Wishful thinking? LOL'd at "What is lyme doing to me now?" Tis is probably why my LLMD suggested watching it for a few weeks. I was getting frightened by the new symptoms because I have heard you can lose your ability to walk- almost over night. Once it went to my legs I became frightened. I am going to get a little more daring on herbs (but not red sage) and give it several months, or at least until I get more test results.

I will also fret less and bother you guys less. Apology!!!

When my son was a toddler instead of saying sorry, he would blurt out "APOLOGY!" and almost scream it. So that's what we say now.

Have a good, hopefully pain-free weekend everyone.
Posted 10/8/2016 3:52 PM (GMT 0)
LOL, Huddie. I love the story about your son saying "apology!"

I think any new symptoms kind of freak us all out, until we get used to it. My favorite word to say gets censored here! LOL! But a slightly nicer word that I use is POOP!!! When new symptoms show up. I'm just frustrated with it all now, not afraid of it.

And thank you for your kind words. blush I can't help but reach out to him, he's quickly become more like a brother to me than anything and he's in a lot of pain right now. I'm very familiar with the pain of losing people unfortunately, and fully understand that we all grieve in different ways - I don't expect him to do anything, but try to go with the flow of how he feels and only gently suggest that (a) we understand, (b) that it's normal and (c)we aren't going to kick him out because he's not "over it" yet!! I could NEVER do that. Poor guy. He misses his soul mate very badly right now. cry
Posted 10/8/2016 4:52 PM (GMT 0)
Trav,

Sorry you get censored. I call it Lyme-tourettes. When the adrenals get frazzled and we get overwhelmed a little bit of cursing can happen. I never had that before.

My heart goes out to your friend. I can't even imagine losing my husband. While his heart and soul may be broken right now he is fortunate to have you and such a safe haven right now. That is a comfort in the dark storm.
Posted 10/8/2016 4:56 PM (GMT 0)
Huddie you are never a bother!

You remind me of my beginning lyme and I so want to help you through this.

Your questions and reactions are so very similar to what mine were.

You are doing great, and little by little you will get there!
Posted 10/8/2016 4:58 PM (GMT 0)
Well, I can't really blame Lyme for my bad language! LOL! That's been with me for too long now. I used to make sailors blush when they pissed me off too much! I toned down my language tremendously while I was raising kids of course, but some of those words just stuck with me. I'm too ornery to give up ALL of my bad habits, you know! smilewinkgrin

Thank you, that's what we decided when we invited him to come live with us - we don't have much, and we will be eating a lot of beans, but we could be here for him and help him get through this tough time. He doesn't want to be alone while going through this, and I don't blame him for that.
Posted 10/8/2016 10:36 PM (GMT 0)
Huddie - i picked up on the fact that you said you are feeling so much better and that you are away for weekend. I also feel better away from my house - which is why I was looking into mold. Pay attention if you feel worse again when home.
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