This is topic Herx or Harm? in forum Medical Questions at LymeNet Flash.


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Posted by ESG (Member # 4816) on :
 
I have done 3 trials of Minocin. The first lasted about a month, the second lasted 2 days, and the third lasted 2 weeks even though I really wanted Mino to work for me & really wanted to give it a few more weeks.
I started Mino after 2 years of intense combo treatments & previous to that many years of being provided with enough Doxy to keep me "functioning" by a nice psychiatrist. Meaning: those spirochetes have been under attack for a long time already.
Basically the Mino negatives for me have been a constipation that was not due to fiber or hard stools but due to a nervous sytem shut-down, as far as I could tell (I tried lots of approaches!). I also had tingling and numbness in my extremities, which got worse & spread up arms & legs with time; every night my arms would be totally numb if I wasn't careful how I placed them. I had intense but brief attacks of pain in various body joints, joints that have never hurt before.
Then came violent nightmares and incredibly bizarre dreams, in which I was always about to be killed due to some attack (machine guns, etc.) and there is no basis for this as I do not watch TV and am a stay-at-home mom in a quiet small town.
Then came an all-over malaise, a creepy-crawly feeling that I had to get something bad out of my body & brain. And there was a bearable but worrisome sense of depression and anger.

What does make me feel better & seems to keep me on an even keel is the combo of Doxy and Tindamax.

After so many combo trials with Dr. H. and so many good & not-so-good reactions to meds, some downright scary, and now this series of trials with Minocin (and yes I did start with a low dose, once a day only or every other day, in the third trial)I am left with the nagging question of how do we sort out what is a Herx and what is actual harm to ourselves? I have found that even the docs do not know - I believe we have to trust our own instinct, listen to our bodies and yes, research research research. Despite living in a state of brain fog ...

Yesterday I simply could not make myself swallow another Minocin; the day before I had had 50 mg in the AM only. I went back to the Doxy/Tinda. By late afternoon yesterday I felt this amazing shift in mood/personality: I was no longer feeling anxiety; I was not feeling on edge and disjointed (mentally & physically uncoordinated); I was feeling calm and so much happier. Then came a feeling of incredible fatigue: mental, emotional, physical. Like I had had just done something very stressful.

On the other hand, the first time I took Diflucan I felt so bad I swore to never take it again; 2 years later I had to take it again (200mg): miracle of miracles, I suddenly felt so much better I couldn't believe it. So there was something that scared me the first time and had me celebrating.

I am not looking for answers here or advice (I do diet & vitamin & probiotics, lemon water, pulsing, slow intro of new meds,etc.); I just thought others might want to share their ideas so the ones who are newer at this medication trial lifestyle will understand that 1. they are not alone and 2. it is very difficult for both the patient and the doctor to know where to go with treatment. If you have a doctor who confuses you with choices, you just might be in the right place, frustrating as it might be!

ESG
 

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Posted by Aniek (Member # 5374) on :
 
I had similar dreams every night I took Vioxx. Maybe it's one of the ways our bodies tell us we are harming ourselves?
 

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Posted by humanbeing (Member # 8572) on :
 
I also wonder if I should just fight through the pain or give it a break already.

When I take abx, I am quite sick and have terrible neuropathic pain. I just assume that "no pain, no gain" is the lyme mantra.

I really can't function too well unless I go off abx.

But now that I am 13 months into treatment, how can you stop when you are so symptomatic?

Also, Dr. J said in a recent lecture that if the lyme pt isn't herxing, the drug combo needs to be changed cause it's not working any more....

I often want to listen to my body, but maybe the spiroketes trick it into hurtin so bad it wants me to stop the meds so it can propagate...

I understnd where you are coming from... (do you see doc p?) I am in CT too.

Best,
Kim
 

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Posted by luvs2ride (Member # 8090) on :
 
This is a great post!

I take low dose minocycline, 100mg Mon,Wed,Fri which is a RA protocol targeting mycoplasmas. I have been on this protocol now for 11 mths.

The goal is 200mg MWF. Whenever I ramp up to 150 mg, after about 1 week, I develop a rash in my scalp. Also my once-thick hair is thinning on top rapidly. I am female.

The first time I ramped up my dose, I also developed a rash on my face that was almost the butterfly rash of Lupus. YIKES!

This is my only abx and it is scaring me to death.

Luv
 

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Posted by Lisianthus (Member # 6631) on :
 
Hi,

I have been on Mino for 2 years now. I started at 50mg a week. I am now on 200mg a week. I have been doing very well on those doses and have been progressing steadily.


In the beginning I had some simular pains and numbness, but it slowly got better. I don't herx nearly as bad as I used to and I will probably up my dose again soon.


Mino may not be the best choice for you. Everyone is different and some abx work better for some people. You have to find what works best for you.


BTW- I cannot function without abx


Good luck,
Lisi
 

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Posted by Lymied (Member # 6704) on :
 
I have friends who love Mino...personally doxycycline has helped me tons more...think it is strain related.

I had nasty nightmares but they seemed to get a lot better when I was treated for babesia.
 

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Posted by Katcon (Member # 9812) on :
 
I ask myself these questions all the time. I have refused to take some abx after a few days of treatment.

I know for myself how I feel when I herx, and when I drug is just plain toxic for me.

My llmd is also changing things up on me, and I am terrified because currently I am taking Adoxa and I love it. I will be switching to Tindamax only.

I just hope I don't fall apart next week.

I feel your pain and confusion.

I am glad to hear you liked Tindamax.
 

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Posted by Cate (Member # 8787) on :
 
I agree - this is a great thread. This is exactly my dilemma with trials of several low-dose abx over the last year. I have a clinical diagnosis from a LLMD but no clear lab tests confirming tick-transmitted infection. So most of the abx tried (variously, bactrim full dose, rifampin 75 mg, minocycline 10 mg every other day and zithromax 250 mg every other day) are in part, to see my response to them.

I have stayed on most only 2-4 weeks, because I get intolerable side effects, and as a person who is sick but still able to work full time, I don't want to go over the edge into total disability.

For my doc, these symptoms indicate infection. But I'm not convinced -- when I get side effects like muscle pain, insomnia, fatigue or headache, I have no idea if the abx is a "productive" herx or simply toxic for me. Most of my life I've avoided pharmaceuticals and tend to react strongly to them.

However, when I get lymph congestion from a low-dose abx, it seems much more clearly that it is doing some good. Wondering if others of you make such distinctions? What are the symptoms tell you something is working?
 

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Posted by Lisianthus (Member # 6631) on :
 
Cate,

I am not a doctor but from what my LLMD has told me and from having family members who have been going through this for many years.... I kinda of expected to feel horrible after taking abx, and I did. Increased headaches, muscule twitching, fatigue...etc.


The very first dose of doxy I took, I just wanted to die. I called my LLMD and told him this. Then he started me on a very low dose of Mino (and I was scared) but I took it, and I had pain and felt like I was run over by a truck.


But eventually I began to feel better. It was like a graph or chart.... First you see the line going down(after you take abx) then you get a spike in the chart, where your moving up. Like one step back and two steps forward. But it takes awhile before it starts to move up.


It also depends on the person, how sick they are, how long they've been sick and how many co-infections they have. Everyone is different.


I do know for me that I have been steadily improving since being on abx. And when I go off abx I get worse.... brain fog, cognitive problems, reading, understanding what people are saying, neck pain, TMJ, just pain in general.

I can understand why you would think the abx are toxic to you, I know I felt like that in the beginning. But you really do have to detox from the abx because they producing toxins when they kill off the bacteria in your body. That is an important part of getting well.

Also you may want to ask your doctor to start you on a very low dose and ramp up so you can work. My husband does this so that he can continue to work also.

You just have to get over the hump, and it will start getting better.

Good luck,
Lisi

[ 15. January 2007, 02:35 PM: Message edited by: Lisianthus ]
 

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Posted by Cate (Member # 8787) on :
 
Thanks Lisianthus. Yes, low dose and ramping up seems to be the only way I can do it. Plus, herbal and supplement supports do help a great deal and don't seem to make life as miserable. Whether it will be enough in the long run, I'll have to wait and see.
 

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Posted by ESG (Member # 4816) on :
 
this is interesting - I actually posted the original 'letter' in early January, then it disappeared ... and here it is again, with replies.

One problem I have with reacting strongly to meds is that I am a single mom with 2 teens at home, one of whom is autistic; I have to drive one teen to work 3 days a week and support the other in her own LD recovery process.

I have a hard time dealing with major setbacks after coming along so far after 2 years of intensive LLMD treatments. I also wonder about my reaction to Minocin being a Herx after 2 years of multi-meds treatment. I may give Mino another try; just had to take a break & feel able to cope with daily life - luckily I had Doxy and Tinda on hand.

I have a very sensitive body - the LLMDs we went to in NY overwhelmed me over and over again. I have learned to watch out for myself as I only I know what it feels like to be me.

And I decided to look into Buhner's book/protocol as a support to meds, not as a replacement. His book is fascinating - the best I have ever read for an overview of spirochetes.

Interesting to me that if Doxy and Mino are somewhat the same, so they say, then why do I get such a huge reaction to a small every-other-day dose of Mino after lengthy treatment on high doses of Doxy? I am still thinking on that one.

I have to say that Lyme is an intellectual challenge as well as a health challenge! Wish my brain worked better!

ESG
 

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Posted by lyme4 (Member # 10723) on :
 
Hi,

I could not due mino, my brain felt like it swelled up and I couldn't see and focus on anything. I tried it for a week and thought I was going to die.

I am on doxy, 3 100 a day and feels better than mino plus mepron. I want to add in tindimax, pulsing it.

Lisianthus,

What due you use for detox? I never have used one, only when I was off abx and it was for stools.

What product and due you detox while taking abx?

Please help?

Thanks lyme4
 

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Posted by ESG (Member # 4816) on :
 
I was going to try Mino one more time today .... had the pill out at the table, picked it up, and then absolutely could not make myself take it! This never happened to me before - not even with disgusting Mepron. I do believe my body is telling me something ...

ESG
 

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Posted by Boomerang (Member # 7979) on :
 
It is so interesting to read the different responses each person has to ABX. My hubby started mino about a month ago....and he is really doing great on it. It has helped him a lot.

He's also started ramping up his flagyl pulses, and it all seems to be working well. Keep in mind, he has been on ABX since Oct 05.....

From what we've learned, you can't be too agressive with the ABX. Do slow dose, let your body heal and rest a bit......

That's been the big battle for my husband, he wants to take too much, cause he wants to be done with all of this.

take care all.
 

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Posted by bettyg (Member # 6147) on :
 
esg,

please go to your top post and break it up into paragrahs please for the neuro lymies who can't read/comprehend SOLID BLOCKS OF TEXT like you posted.

click on PENCIL ICON,

now go to topic line and add MINO at beginning of what you showed for topic; you'll get MORE MINO folks this way!

i suggest you EDIT your post and do the following please:


now go to your TEXT part and break up your entire SOLID blocks of text into short paragraphs; see how folks answered you for guidance ok!


so break it up into sentences; if you're really wordy like me; 1-2 sentences MAX per paragraph.

then hit the enter key twice for EACH PARAGRAPH until you have done this on your entire post.

go to bottom left, mark the box SEND ALL REPLIES TO ME,

hit the EDIT SEND button when you are done!

keep these instructions handy....


please post only in short paragraphs on ALL POSTS/REPLIES since majority of us have NEURO lyme and can't read/comprehend how you typed the solid blocks of lyme. THANKS!
 

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Posted by Lymetoo (Member # 743) on :
 

quote:

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Originally posted by lyme4:

I could not due mino, my brain felt like it swelled up and I couldn't see and focus on anything. I tried it for a week and thought I was going to die.

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