Success stories with IV abx?

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kml1997
Regular Member


Date Joined May 2017
Total Posts : 100
   Posted 9/18/2017 7:06 PM (GMT -6)   
I may be starting IV abx in a couple of weeks.. I've had lyme for a little over a year now. My last lingering symptoms are head and eye pressure, and panic attacks (I only get attacks when I drink coffee/caffeine/consume sugar).

Has anyone on here successfully been treated with IV? Has it helped eye and head pressure? I'm also not sure which IV abx treatment I will be having. I'm discussing this option with my LLMD next Saturday.

I want to be sure this is the next step I want to take in treatment because it is more risky than oral abx

[Symptoms began Aug. 2016. Diagnosed Jan. 2017. Doxy from Jan. to May. Zithro June to July. Tested negative for co-infections, but LLMD suspected Babesia. Mepron for 2 weeks (w/ Zithro), got bad heart palps, so stopped Mepron. Stopped Zithro shortly after when PVC's continued. Currently no abx]

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26428
   Posted 9/19/2017 12:27 AM (GMT -6)   
ChickNorris is doing well on IV abx. She posted an update today.
Take a look at this thread:

www.healingwell.com/community/default.aspx?f=30&m=3914422
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26428
   Posted 9/19/2017 12:29 AM (GMT -6)   
Here's couple more threads with members discussing IV abx.


www.healingwell.com/community/default.aspx?f=30&m=3642699
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1352
   Posted 9/19/2017 5:05 AM (GMT -6)   
IV ABX for Lyme should be considered only for the most severe bedridden neuro cases or when the gut cannot tolerate even modest ABX tx.

I was on IV for 16 months between 12/11 and 3/13 and in hindsight the improvements did not justify the effort and cost. Just my 2 cent opinion.

It sounds like you need to find either an ABX, herbal or combination protocol that you can tolerate to treat Babs and Bart before considering IV mostly used just for Lyme. Bart turned out to be the infection that was holding back my 50% plateau to 80% improvements.

Post Edited (tickbite666) : 9/19/2017 5:10:44 AM (GMT-6)


KB69
Regular Member


Date Joined Jan 2017
Total Posts : 147
   Posted 9/20/2017 10:27 AM (GMT -6)   
KML, I had severe head pressure with Babs. But, my head pressure symptoms are gone since I treated it with Mepron and Zith for 6 months.

If you cannot tolerate Mepron, has your LLMD mentioned Malarone or herbal approaches? Before you go the IV route, perhaps it is worth considering going after co-infections one more time in a different way.

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 5813
   Posted 9/22/2017 4:45 PM (GMT -6)   
Hi kml1997 -

I have been on IV abx for 3 yrs - almost done. I hope you see this post before your appt - I think it would be good to ask your MD some questions.

From your post, it seems you've tried doxy and Zith but quite honestly, the durations are short so that is probably one reason you are considering additional treatment. However, IV abx aren't "necessary" for most people. Given the cost and complexities they are usually reserved for those with Gi problems that prevent proper absorption of oral abx or herbal tx. I think there are probably simpler things you might want to try first.

Did you have issues with the doxy? 6 months of doxy is NOT long and could very likely just not be long enough or at the right dose. Min. dose is 400mg per day. Why did you stop?

Head and eye pressure could be from several issues: might be inflammation, toxin overload from Lyme, babs or another infection you have. The coinfection testing is NOT reliable so I would not rule out something other than Lyme, specifically the babesia, which commonly causes head and eye pressure.

Head and eye pressure could involve your gut, too. Remember the gut-brain connection (proved when science finally found blood vessels that link the two). So what is going on in your GI can affect the eye and neck pressure going on in your head and certainly panic attacks and other "neurological-psychological" symptoms. Most MDs don't understand this association well but if I were you, before I launched into IV tx for those sx I would explore other protocols. Tough to know what to recommend w/out knowing what you've tried but here are a few guiding questions:

- Have you tried any anti-inflammatories like japanese knotweed, turmeric? Some diet changes can also reduce inflammation.

- Do you have any GI issues? If so, what are your sx and when did they start? How is your diet?

- Do you know if you have any yeast/fungal issues? Are you aware of the association between sugars and antibiotics and GI microbiome imbalances and the symptoms (like panic attacks) that they can cause? Here is more info on yeast/fungal overgrowth in the "New to Lyme?" thread:
www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275

- Caffeine can be difficult for some people to metabolize, which could also be linked to head and eye pressure.
.....one issue is that caffeine is a Vasoconstrictor, which means it constricts blood vessels to the muscles in the head and neck only, which is why it is so helpful for headaches for some people, for others it does the opposite. When you get a headache it's typically a rush of blood to brain blood vessels causing them to swell and that pressure against your skull is the “ache”, for some, caffeine can help control this by shrinking the vessels back down.
.....The strange paradox is that too much caffeine or stopping caffeine can actually cause “rebound” headaches so it's important to maintain dosage every day unless you cannot metabolize it well.
.....also, it stimulates your adrenal function, which can cause a series of other issues

- have you tried herbal protocols? Many of us here are on a hybrid of abx and herbal protocols - it's tough to know what works for whom so it's best to try options out. There are several herbal protocols for tick infections that are good. Let us know if you would like recommendations. There are several good alternatives to abx and mepron.

- I would also explore increasing lymphatic drain and circulation. I had a LOT of head pressure and swelling of nodes when I started bart tx but when I took red root and focused on better drainage and circulation, those sx reduced significantly.

Regarding IV tx, here is a LOT of info on benefits and what IV abx entails and what options are available, if you're interested. Please let me know if you have any questions:

To IV or not to IV:
www.healingwell.com/community/default.aspx?f=30&m=3674546

COST of IV:
www.healingwell.com/community/default.aspx?f=30&m=3665291&g=3665498#m3665498

-p

kml1997
Regular Member


Date Joined May 2017
Total Posts : 100
   Posted 10/11/2017 9:16 PM (GMT -6)   
So sorry I am JUST reading this now. Instead of IV abx, I'm on Ceftin for this month.
I went off of doxy because my mood swings, lightheadedness, and brain fog were all getting extremely bad the last couple weeks of the treatment. I've been monitoring my diet (no sugar or caffeine, minimal carbs). I do have bloating.. always have though. It was the worst when I first showed Lyme symptoms last fall. I can't swallow pills so I have to take the liquid form of abx. I take a probiotic every day, glutathione in the mornings, and drink lemon water throughout the day. I WAS on Nystatin for a while but I'm not sure if that did much or not. Maybe I should add it back?

I have not tried Japanese knotweed, however I've heard great things about it, it's something I'd like to try

Thank you for all of this info Pirouette!

Pirouette said...
Hi kml1997 -

I have been on IV abx for 3 yrs - almost done. I hope you see this post before your appt - I think it would be good to ask your MD some questions.

From your post, it seems you've tried doxy and Zith but quite honestly, the durations are short so that is probably one reason you are considering additional treatment. However, IV abx aren't "necessary" for most people. Given the cost and complexities they are usually reserved for those with Gi problems that prevent proper absorption of oral abx or herbal tx. I think there are probably simpler things you might want to try first.

Did you have issues with the doxy? 6 months of doxy is NOT long and could very likely just not be long enough or at the right dose. Min. dose is 400mg per day. Why did you stop?

Head and eye pressure could be from several issues: might be inflammation, toxin overload from Lyme, babs or another infection you have. The coinfection testing is NOT reliable so I would not rule out something other than Lyme, specifically the babesia, which commonly causes head and eye pressure.

Head and eye pressure could involve your gut, too. Remember the gut-brain connection (proved when science finally found blood vessels that link the two). So what is going on in your GI can affect the eye and neck pressure going on in your head and certainly panic attacks and other "neurological-psychological" symptoms. Most MDs don't understand this association well but if I were you, before I launched into IV tx for those sx I would explore other protocols. Tough to know what to recommend w/out knowing what you've tried but here are a few guiding questions:

- Have you tried any anti-inflammatories like japanese knotweed, turmeric? Some diet changes can also reduce inflammation.

- Do you have any GI issues? If so, what are your sx and when did they start? How is your diet?

- Do you know if you have any yeast/fungal issues? Are you aware of the association between sugars and antibiotics and GI microbiome imbalances and the symptoms (like panic attacks) that they can cause? Here is more info on yeast/fungal overgrowth in the "New to Lyme?" thread:
www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275

- Caffeine can be difficult for some people to metabolize, which could also be linked to head and eye pressure.
.....one issue is that caffeine is a Vasoconstrictor, which means it constricts blood vessels to the muscles in the head and neck only, which is why it is so helpful for headaches for some people, for others it does the opposite. When you get a headache it's typically a rush of blood to brain blood vessels causing them to swell and that pressure against your skull is the “ache”, for some, caffeine can help control this by shrinking the vessels back down.
.....The strange paradox is that too much caffeine or stopping caffeine can actually cause “rebound” headaches so it's important to maintain dosage every day unless you cannot metabolize it well.
.....also, it stimulates your adrenal function, which can cause a series of other issues

- have you tried herbal protocols? Many of us here are on a hybrid of abx and herbal protocols - it's tough to know what works for whom so it's best to try options out. There are several herbal protocols for tick infections that are good. Let us know if you would like recommendations. There are several good alternatives to abx and mepron.

- I would also explore increasing lymphatic drain and circulation. I had a LOT of head pressure and swelling of nodes when I started bart tx but when I took red root and focused on better drainage and circulation, those sx reduced significantly.

Regarding IV tx, here is a LOT of info on benefits and what IV abx entails and what options are available, if you're interested. Please let me know if you have any questions:

To IV or not to IV:
www.healingwell.com/community/default.aspx?f=30&m=3674546

COST of IV:
www.healingwell.com/community/default.aspx?f=30&m=3665291&g=3665498#m3665498

-p

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 5813
   Posted 10/11/2017 10:08 PM (GMT -6)   
kml1997 -

First, please check to verify that the liquid abx doesn't include sugar (often, the liquid medications add sugar so that they taste less horrible).

Have you tried a GI binder? It might be very helpful with your neuro-psych isssues (mood swings, light-headedness, brain fog).

Your diet sounds great!

And yes, I would try the Nystatin again - this time, try to take higher doses. I'm assuming it's the Nystatin pills? They can often have too little of the actual Nystatin drug and be filled with fillers and MDs often prescribe too low a dose. So try taking higher doses (slowly increase the dose day after day) and see if you experience die off symptoms (gas, bloating, cramping, diarrhea, and your neuro-psych sx also might get a little worse.)

When you start feeling sx stay at that dose--don't increase. And this is also when you really need a binder to help move the die off neurotoxins out of your body. Lots of info here on binders.

Once you feel you've addressed the yeast/fungus, if that's an issue, and maybe have a good protocol with GI binder underway, try the ceftin again, maybe with smaller doses for the first few days. If the ceftin works this time you will need to stay on Nystatin while you're taking abx. And I would ask for an Rx for the PURE Nystatin powder - more info here:
Y/FO post in the "New to Lyme?" thread:
www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275

If you still have the same problems with it, you might do better on herbal antimicrobials - there are several to try and some have a really gentle concentration and others are more intense and you can vary the dose, which is all much easier to manage than abx. if you post a request for suggestions, I'm sure you'll get a lot of responses.

-p
Lyme Moderator
Chronic late-stage lyme—likely infected in '00; Clinically dx Mar'14 w/ Babs, Fry Labs+ Bart-like, CDC+ Bb. First treated 4-5 viruses & GI/immune. Herbal antimicrobials in May; IV port-started Rocephin in Nov; added vancomycin Mar'16;
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock/Red root; Samento/Banderol/Enula; JK/Turmeric; BFM-1; antifung; many many supps; cholestyramine!

kml1997
Regular Member


Date Joined May 2017
Total Posts : 100
   Posted 10/12/2017 6:09 PM (GMT -6)   
I've never heard of a GI binder, but okay I will restart the Nystatin. And yes I take the pill form.
I was prescribed 500,000 units per tablet to take twice per day. Should I start twice per day then work up to 4 per day? Then max 6 per day, or is that too much you think?
Pirouette said...
kml1997 -

First, please check to verify that the liquid abx doesn't include sugar (often, the liquid medications add sugar so that they taste less horrible).

Have you tried a GI binder? It might be very helpful with your neuro-psych isssues (mood swings, light-headedness, brain fog).

Your diet sounds great!

And yes, I would try the Nystatin again - this time, try to take higher doses. I'm assuming it's the Nystatin pills? They can often have too little of the actual Nystatin drug and be filled with fillers and MDs often prescribe too low a dose. So try taking higher doses (slowly increase the dose day after day) and see if you experience die off symptoms (gas, bloating, cramping, diarrhea, and your neuro-psych sx also might get a little worse.)

When you start feeling sx stay at that dose--don't increase. And this is also when you really need a binder to help move the die off neurotoxins out of your body. Lots of info here on binders.

Once you feel you've addressed the yeast/fungus, if that's an issue, and maybe have a good protocol with GI binder underway, try the ceftin again, maybe with smaller doses for the first few days. If the ceftin works this time you will need to stay on Nystatin while you're taking abx. And I would ask for an Rx for the PURE Nystatin powder - more info here:
Y/FO post in the "New to Lyme?" thread:
www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275

If you still have the same problems with it, you might do better on herbal antimicrobials - there are several to try and some have a really gentle concentration and others are more intense and you can vary the dose, which is all much easier to manage than abx. if you post a request for suggestions, I'm sure you'll get a lot of responses.

-p

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 5813
   Posted 10/12/2017 7:50 PM (GMT -6)   
No, I don't think 6 tablets is too much. You'll start s-l-o-w-l-y and eventually work up to 6 and higher, if you can.

However, you'll run out of your Rx faster. Maybe that's OK because you stopped taking it and can refill it soon.

Here is good info about dosing - it's specific to the pure Nystatin powder, but you can do the translation for tablets:

5 ml (powder) = 1 teaspoon (powder) = 8 million i.u. per day = 16 500,000 i.u. tablets per day

drmyhill.co.uk/wiki/Nystatin_-_how_to_take_it

You can see that Dr. Myhill suggests that 1/2 t of powder (8 tablets) is a starting dose ------but I strongly suggest starting much lower. And then use the table to slowly work up to an optimal dose, which could be as many as 40 tablets. And that's probably more than what you have on-hand. So start increasing dose as you can, shoot for at least 8 tablets per day. And if it's working really well, consider asking your MD for the PURE powder form.

Hope this helps -

-p
Lyme Moderator
Chronic late-stage lyme—likely infected in '00; Clinically dx Mar'14 w/ Babs, Fry Labs+ Bart-like, CDC+ Bb. First treated 4-5 viruses & GI/immune. Herbal antimicrobials in May; IV port-started Rocephin in Nov; added vancomycin Mar'16;
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock/Red root; Samento/Banderol/Enula; JK/Turmeric; BFM-1; antifung; many many supps; cholestyramine!

kml1997
Regular Member


Date Joined May 2017
Total Posts : 100
   Posted 10/12/2017 8:40 PM (GMT -6)   
Okay thanks for all the help, I will definitely begin doing that tomorrow
Pirouette said...
No, I don't think 6 tablets is too much. You'll start s-l-o-w-l-y and eventually work up to 6 and higher, if you can.

However, you'll run out of your Rx faster. Maybe that's OK because you stopped taking it and can refill it soon.

Here is good info about dosing - it's specific to the pure Nystatin powder, but you can do the translation for tablets:

5 ml (powder) = 1 teaspoon (powder) = 8 million i.u. per day = 16 500,000 i.u. tablets per day

drmyhill.co.uk/wiki/Nystatin_-_how_to_take_it

You can see that Dr. Myhill suggests that 1/2 t of powder (8 tablets) is a starting dose ------but I strongly suggest starting much lower. And then use the table to slowly work up to an optimal dose, which could be as many as 40 tablets. And that's probably more than what you have on-hand. So start increasing dose as you can, shoot for at least 8 tablets per day. And if it's working really well, consider asking your MD for the PURE powder form.

Hope this helps -

-p
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