Beaver gets Lymed. (Trimethoprim, Plaquenil?)

[beaverfury]

That would be 25+ years for me to recover then, since I've had it for over 20 years now without treatment

Admittedly, I'll be pretty happy if I can just get healthy enough to fully care for myself without struggling. And it'd be awesome if I recover enough to have a kid some day!

I really hope you do!

I've passed on the child option. It's never been a desire of mine so i don't suffer for the decision. Rather, the thought of having a child while having me/cfs makes me suffer.

 

[PDXhausted]

@beaverfury or anyone else on long term antibiotics-- have you had any problems with your gut?

After about 2 months of low dose oral amoxicillin, my gut got so bad I could barely digest any food anymore. I quit taking them for two months and have been careful with diet and taking lots of probiotics, but I can still no longer eat sugar, dairy, most grains, and I broke out in hives on strawberries recently. I didn't have any problems with food prior to antibiotics.

It stinks too, because I felt so much better otherwise while taking the abx. I'm just trying to figure out how other people manage for years on them?

Anyway, I'm just starting on cat's claw now in hopes I get some effect from it until I can figure out my gut situation.

 

[Ema]

That would be 25+ years for me to recover then, since I've had it for over 20 years now without treatment

Admittedly, I'll be pretty happy if I can just get healthy enough to fully care for myself without struggling. And it'd be awesome if I recover enough to have a kid some day!

Full recovery and feeling mostly normal are two different things...And there are lots of exceptions to general rules of thumb. I hope it takes much less time for you to get all the things you want from life.

And maybe we will get some new treatments that will shorten the marathon too. Things change every day.

 

[Valentijn]

It stinks too, because I felt so much better otherwise while taking the abx. I'm just trying to figure out how other people manage for years on them?

Maybe it's better when the antibiotics are IV, since they aren't hitting the gut directly?

 

[Valentijn]

Full recovery and feeling mostly normal are two different things...And there are lots of exceptions to general rules of thumb. I hope it takes much less time for you to get all the things you want from life.

And maybe we will get some new treatments that will shorten the marathon too. Things change every day.

I've also got one of the best doctors in the world, when it comes to treating ME/CFS and Lyme, especially in combination. I'm already seeing noticeable gains just on the pre-treatment protocol.

 

[Ema]

Maybe it's better when the antibiotics are IV, since they aren't hitting the gut directly?

I wondered this too...but ultimately they end up in the gut anyway. Might be worth a shot though...

Maybe histamine blockers too? It sounds allergic in nature.

 

[Sushi]

Maybe it's better when the antibiotics are IV, since they aren't hitting the gut directly?

Some abx for Lyme definitely seem to work better and have fewer gut side-effects when given IV. My doc is rotating Lyme patients between courses orally and courses by IV--that is if they are able to get the IV infusions.

Sushi

 

[beaverfury]

@beaverfury or anyone else on long term antibiotics-- have you had any problems with your gut?

No, my gut actually improved fairly quickly after antibiotics. I've had minimal problems for the last year if i stick to a sensible diet. I guess it's a lottery.

Supposedly, narrower spectrum abx should be more selective and not do a slash and burn in your intestines.
I'm only taking one broad spectrum abx (as far as i know). Ampicillin. This may have helped an enterococcus overgrowth i had. I'm taking NAC to counter any mitochondrial damage that ampicillin might do.
I'm also taking probiotics, kefir and aloe vera to protect my gut lining.

Before i got ill i used to have a cast iron gut, so i think this is to my advantage now.

I hope you find some solutions, PDXhausted

 

[sianrecovery]

Hi Beaver

Great to get an update. I have spent most of the last few years on abx, and they have made a huge if transient, difference. But their effects where off when I stop or I become resistant when on then. Have done doxy, mino and tinadazole you mention you are going to try. If you do doxy, make sure you eat with the dose, sit upright for 30 mins after (or at least don't lie down) and stay out of the sun or where sunblock.
I have needed abx, but there is a long term price to pay in terms of gut immunity I think. I share your frustration. But I'm grateful for any chinks of light really. The other big player for me has been T3, and I have concluded I needed to raise my metabolic rate before I could start fighting chronic infection.
Good luck xxxx

 

[k-AUS]

@Sushi @Ema 3-5 years, huh? Far out.

I wonder what sort of a person i will have turned into by then. Probably only have fur, feather or fins friends left.

@k-AUS I'm liking that puppy. Seriously cute. What is it?
I typed 'marmalute' into wiki and it come up with 'marmalade'. It's not a fruit preserve, so i guess it's some sort of husky?

I am on oral antibiotics k-AUS. Azithromycin, plaquenil, trimethoprim, ampicillin at the moment.
Due for a change soon.

I'm also trying to incorporate more Buhner herbs. Cat's claw, resveratrol, andrographis etc.

@beaverfury

Thats my puppy Koda, he is a Samoyed. It's his first birthday on Saturday.

I'm on oral abx as well. Plaquenil - I just stopped Azith as it gave me diarrhoea. Will be trialling another abx soon. Just started ldn 4.5mg with no good or bad side effects. I was querying the IV abx because so many people seem to be on them, however my dr. says its a fairly serious route (picc line) and the herxes can cause a lot of damage to the body. i.e.. level of kidney function required to remove the toxins. What I am hearing is that there is no short cut, that going slowly is better and more importantly severe herxing needs to be avoided.

I seem to hear of so many people convulsing and having serious issues during treatment. I wonder if they are going too hard with the abx???? Food for thought only.

 

[PDXhausted]

Thanks for your guys' replies to my question-- @beaverfury I'm glad to hear your gut handled them ok, so now I'm kind of glad I stopped them to repair my gut first, since I am suspecting my reaction was probably not good. Actually thinking on @Ema 's comment, I probably have developed a leaky gut.. So things that never gave me issues before are now getting into places where they are not recognized and causing issues. I have several of the Crohn's gene mutations, so perhaps that factored into it. Anyway, I think I'll be trying glutamine and some of the other leaky gut treatments and see if that helps.

Beaver- I'll be curious to hear if the Buhner herbs do anything for you as well.

 

[beaverfury]

Hi Beaver

Great to get an update. I have spent most of the last few years on abx, and they have made a huge if transient, difference. But their effects where off when I stop or I become resistant when on then. Have done doxy, mino and tinadazole you mention you are going to try. If you do doxy, make sure you eat with the dose, sit upright for 30 mins after (or at least don't lie down) and stay out of the sun or where sunblock.
I have needed abx, but there is a long term price to pay in terms of gut immunity I think. I share your frustration. But I'm grateful for any chinks of light really. The other big player for me has been T3, and I have concluded I needed to raise my metabolic rate before I could start fighting chronic infection.
Good luck xxxx

Hi Sianrecovery

How did you go on the minocycline? Any noticable neurological effects? I've heard there are more side effects because it gets into the central nervous system

Does raising your T3 give you an increase in physical or mental energy ?

 

[beaverfury]

@k-AUS I like him. H-B for tomorrow, Koda

I get direly rear ended on Azithromycin too, so will be happy to cease.


@PDXhausted . Have you tried the GAPS diet ? I can recommend it for gut problems.

 

[sianrecovery]

Hi BeaverF

I was ok on mino. If you read it's wiki entry, it clearly has an interesting diversity of effects - esp on women, esp on immunity. My friend got the dizzy thing.

T3 - maybe it's all a bit Dorian Grey, and there may be a big bill in terms of physical effects down the road - but it has made me functional again.

X

 

[beaverfury]

I must say, my functioning has gone up after two weeks on minocycline.

I noticed some improvement on the buhner herbs, with less pain and a clearer head. Now that i have added minocycline i am getting less PEM also, and i feel a little stronger.

I went for a 5 kilometre walk and had no PEM a few days ago. I've done quite a bit today and am still going ok.
Pain has disappeared for the time being.
I add the usual rejoinder that it could be a fluke.

My doctor has given me a new regime of minocycline+ tinidazole+ azithromycin+ trimethoprim+plaquenil for the next six months!!
Now that.. has to kill something!

 

[heapsreal]

just a thought, have u considered bactrim? as its a combination abx of trimethoprim and sulphamethoxazole, apparently less isues with abx resistance maybe broader range of effects??

 

[beaverfury]

just a thought, have u considered bactrim? as its a combination abx of trimethoprim and sulphamethoxazole, apparently less isues with abx resistance maybe broader range of effects??

I'm not game to try bactrim. It certainly kills stuff, but apparently has more side effects than trimethoprim alone, and trimethoprim is my major bugbear in the whole regime.
I've just sneakily halved my trimethoprim dosage today so i might catch up on some sleep tonight.
That and the minocycline leave me in a shallow sleep all night.

I can't find anything that aids deep, slow wave sleep. If anyone knows of anything please let me know.
I take magnesium glycinate and mag threonate, motherwort (melatonin), glycine and sometimes some temazepam.

 

[RustyJ]

I'm not game to try bactrim. It certainly kills stuff, but apparently has more side effects than trimethoprim alone, and trimethoprim is my major bugbear in the whole regime.
I've just sneakily halved my trimethoprim dosage today so i might catch up on some sleep tonight.
That and the minocycline leave me in a shallow sleep all night.

I can't find anything that aids deep, slow wave sleep. If anyone knows of anything please let me know.
I take magnesium glycinate and mag threonate, motherwort (melatonin), glycine and sometimes some temazepam.

Bactrim has a bit of a rep. Sent me to emergency 3 times. It is banned in most of UK : http://briandeer.com/bactrim-septra.htm

The sulfa part is the problem, and is mostly ineffective. Trimeth is ok.

 

[sianrecovery]

Bactrim caused a pretty severe reaction for me, not your usual herx - all joints red hot and swollen, rash, felt like death. That was years ago, after being treated with it several times. Doc then next reaction might be anaphylactic, so obviously avoided since.
Please keep us updated BF - I did well recently on metrodanizole and augmentin, but my approach is self-guided and haphazard. It helps to follow others progress x

 

[heapsreal]

I used the bactrim for sinusitis. Worked well. Augmentin also works well for sinusitis.
I guess it depends on what infections and what allergies people have???