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scared that im not feeling better (not enough abx) my story.. please help

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Posted 9/11/2016 10:59 PM (GMT 0)
ive been feeling so depressed the last few months and could really use your feedback. when i found out i had lyme i didn't know anything about it, but id read it could be cured with abx so came into this a little overly optimistic about recovery. now i know its so much more then that. its been a rollercoaster.

i had 4 weeks of abx IV treatment (in april) and within 4 days i lost around 50% of my symptoms (not permanently, but over all amazing difference, and i started walking again, just like that!) . i went on to feel great until it finished. in short for the last 6 months since ive not been on a high enough dose of abx to prevent my lyme from returning, but its kept me stable (as in i can still walk) aside from some bad crashes and new symptoms that have started up lately) im now only on 4 x amoxiline a day and feeling new symptoms starting which is not great for trying to be positive .(my lyme doctor wants me on lots of different abx but i cannot tolerate them, i had allergic reactions that landed me in A and E) im starting to worry il never get better. does anyone else feel this way? its a year this month since i got really sick but i had issues a year before that, when i think i was biten.

does anyone know any other tips to make amox last longer or be stronger that doesn't include other abx?
i plan to go back to IV treatment for a month soon but can only afford 4 weeks, i also found out i have EBV which my lyme doctor thinks is not helping me and wants me to do more ivs for.

sometimes i think - i dont have lyme and its something else! due to the dismissive things my non lyme doctor has said to me that come into my head at these moments.

could really use any words of encouragement.
Posted 9/11/2016 11:09 PM (GMT 0)
You can add Probenecid to the Amoxy. Probenecid isn't actually another antibiotic - it's an old gout medication.

I took it with the amoxy and never had any side effects.

What was your amoxy dose?

It needs to be minimum 3000 mg daily - up to 6,000 mg.

/www.drugs.com/pro/probenecid.html

www.webmd.com/drugs/2/drug-8697/probenecid-oral/details

What IV abx will you be on?

You really should be on two abx at a time...not just one. Hopefully the IV antibiotic will go well with the Amoxy.


You also have the option of doing an herbal protocol. have you thought about that?

Hang in there...it's a long road...but you'll get there.
Posted 9/11/2016 11:28 PM (GMT 0)
Waterbee, I can so relate with your frustration! I have been treating since March and although many of my symptoms have improved, I still am not totally well. I haven't been able to walk yet. But I have not done the abx. I have only done herbs. As Girlie said you could add in the herbs if you can't do multiple abx. Many do that.

I do know that this can be a long journey. There are some who have treated for a couple years.

Hang in there! You have improved quite a bit already. You will get well.

Don't be fooled into thinking you don't have Lyme, either. If you tested positive for Lyme or had the rash you have it and need to treat. It is so important not to give up. yeah
Posted 9/11/2016 11:40 PM (GMT 0)
Sharing the same nightmare with you....
Posted 9/12/2016 6:07 AM (GMT 0)
You could try penicillian shots ...mexico has them cheep they last 2 to 3 days ...also for anybody doubting lume you can see the spirochets plain as day with a regular microscope at 1600x in a drop if blood ..if you dont then crush the rbc and they will come pouring out ...cant deny when you see them
Posted 9/12/2016 2:20 PM (GMT 0)
i've been sick for 2 years and treating with heavy combo antibiotics for 18 months and i'm maybe 50% better. main (and most debilitating) symptoms are still there. no one wants to think they're going to have this the rest of their lives as there's no hope in that but unfortunately i think most of us will always have some type of symptoms. there just isn't enough knowledge in this field (and not enough money being spent) to change this statistic.

even with that said we need to keep trying, mixing things up, doing whatever we can to help our body best deal with the invaders and give ourselves the best fighting chance at as much of a normal life as we can. depression sets in often but it doesn't have to be the norm.
Posted 9/12/2016 2:50 PM (GMT 0)
Hi waterbee,

As you start your treatment you also need to pay attention to Detox, and read up on herxing. New symptoms on abx could be mild herxing which are toxins from dying bacteria.

Treatment does have it's ups and downs. Don't give up, it may come with some hard times but you will get better.

Caramba
Posted 9/13/2016 10:27 PM (GMT 0)
thanks for your kind words everyone i really needed to hear this :)
Posted 9/13/2016 10:49 PM (GMT 0)
listening and caring! I didn't go the anti-biotic route (wasn't an option for me). From other people's stories it seems like they work for some, and don't for others, and it seems like the Dr.'s that know the most about this think that anti-biotics alone aren't enough. You might want to talk to your LLMD about what herbs to begin integrating. so sorry for your pain and suffering and aggravation. Sending a healing ray of sunshine your way.
Posted 9/14/2016 12:06 AM (GMT 0)

Girlie said...
You can add Probenecid to the Amoxy. Probenecid isn't actually another antibiotic - it's an old gout medication.

I took it with the amoxy and never had any side effects.

What was your amoxy dose?

It needs to be minimum 3000 mg daily - up to 6,000 mg.

/www.drugs.com/pro/probenecid.html

www.webmd.com/drugs/2/drug-8697/probenecid-oral/details

What IV abx will you be on?

You really should be on two abx at a time...not just one. Hopefully the IV antibiotic will go well with the Amoxy.


You also have the option of doing an herbal protocol. have you thought about that?

Hang in there...it's a long road...but you'll get there.

thanks, i asked my lyme doc about this and he said we could try it but in the uk it would cost 300 pounds per pack so i had to discount it as an idea. however do you think it made a huge difference to your treatment? as if so i may consider it as a one of to try.
i plan to increase my amox also. im on half the dose i should be. i already increased it slightly and had a bad herx for a few days (hence the late reply) it was a neuro herx, so i think it was working.
Posted 9/14/2016 12:09 AM (GMT 0)

Questing (multifacetedme) said...
listening and caring! I didn't go the anti-biotic route (wasn't an option for me). From other people's stories it seems like they work for some, and don't for others, and it seems like the Dr.'s that know the most about this think that anti-biotics alone aren't enough. You might want to talk to your LLMD about what herbs to begin integrating. so sorry for your pain and suffering and aggravation. Sending a healing ray of sunshine your way.

i understand, abx are helping me alot but my body really doesnt like them, amox is all i can cope with.
yes ive chatted to my doc about this, they advice on boivreakers and detox herbs but dont encourage any of the others (allicin ect) but ive been reading up on them and have added some anyway.

which ones did you find the most helpful?
Posted 9/14/2016 1:35 AM (GMT 0)
I would encourage you to try the full protocols. There are few that use partial protocols and still heal.

The problem with using amoxicillin alone is that the bacteria not only can hide when only one abx is used, but amoxicillin doesn't stay in the bloodstream long enough to be effective for these infections.
Posted 9/14/2016 8:54 PM (GMT 0)
do you think amox with something like tinidazole might be effective?
Posted 9/14/2016 9:26 PM (GMT 0)

Traveler said...
I would encourage you to try the full protocols. There are few that use partial protocols and still heal.

The problem with using amoxicillin alone is that the bacteria not only can hide when only one abx is used, but amoxicillin doesn't stay in the bloodstream long enough to be effective for these infections.

Exactly, so you would have to take low dosages frequently. And many people relapse because of biofilms. It is important to disrupt biofilms.
Posted 9/14/2016 9:34 PM (GMT 0)
But disrupt those biofilms carefully!! They contain all kinds of bacteria that have been hiding out. I discovered this the hard way! LOL!
Posted 9/14/2016 10:34 PM (GMT 0)

Traveler said...
But disrupt those biofilms carefully!! They contain all kinds of bacteria that have been hiding out. I discovered this the hard way! LOL!

May I ask what specific anti-biofilm drugs, herbs and/or supps. you use?
Posted 9/14/2016 10:36 PM (GMT 0)
I used Cistus Tea (rock rose tea), and I never made it to the full dose.
Posted 9/16/2016 8:48 PM (GMT 0)
im taking something called NSK-SD by pure caps, two a day. (this is nattokinase 50mg) my lyme doctor sent me (this weekend) Serra Peptase to push things forward a bit after i sent him an email this week saying im not happy with the doses im on. (im actually pretty concerned im not on anywhere near enough abx and herbs so you guys have been amazing, giving me this information.this forum is like pure gold!) my lyme doc also has me on artesnate.

im not on many herbs, just the ones ive put myself on, which are allicin (which is a strong type pf garlic) curcim (which ive had to stop for now as its making my dizzy spells worse) and i add lemon and real ginger to hot water every morning to make a tea with. ALA (alpha acid?) and Glutathione liquid. i also put myself on ubiquinol, and flaxseed and fish oil, iron tablets (as my ferritin is still low) and magnesium.

my lyme doc has told me he thinks i should start taking a multivitamin but ultimately antivirals for my EBV and more IV is the way forward. but i want to do everything i can outside of going to the clinic everyday for IV, i want to take everything i can to stop getting worse, iv cant fix me as i cant be on it forever.

please tell me of anything that helped you :)




thanks so much for your feed back :)

Post Edited (waterbee) : 9/16/2016 2:52:36 PM (GMT-6)

Posted 9/16/2016 8:57 PM (GMT 0)
Bee venom has helped ...lumbrokinase ..andrographis .houttynia and cryptolepsis ..rife helped some too
Posted 9/16/2016 9:33 PM (GMT 0)
Have you tried using lysine for the EBV? It's been very useful for me - just a thought.
Posted 9/24/2016 10:46 PM (GMT 0)
id like to try lysine , could u tell me what do you recommend? also do u know if cat's claw has any effect on it?
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