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Ceftriaxone Rocephin: Experiences and Advice

Messages
44
Thanks for this and your subsequent comment @duncan -- what are the very good alternatives to Ceftriaxone you are interested in? Have you started to try them? Cheers mate!


Cheers

In the US, there are political issues also swirling around Rocephin use, thanks to the IDSA.

You'd think it would be as simple as if you suspect NB, try Rocephin. I have a couple of clinicians recommending I do IV Rocephin for this very same reason, and it seems like good logic on paper. To date, I have declined because: a)I think there are very good alternatives, b) politics.

I have a quick question, though, for those like Helen who have had spinal taps. Really, the main determinant when scrutinizing CSF these days is the AI. That is certainly true in Europe. I wouldn't be surprised if when the IDSA releases its new guidelines, it will recommend an AI metric for the US as well.

I had a lumbar puncture. I had a low positive ELISA. My tester was a researcher, who declined to do a WB or C6 on my spinal fluid. Instead, that researcher went for the AI value, which was negative. When I pushed for an explanation as to why a WB or C6 wasn't employed, I was told they are not good metrics for CSF.

Only, for the life of me I cannot find any literature that has convinced me that AI is any better a metric than an ELISA or WB in CSF exams when is comes to very late stage NB. So I agree with KDM.

Has anyone gotten positive AI results? Has anyone spoken with their clinician about the inherent strengths and/or weaknesses of the AI value when looking for signs of Borrelia in patients' CSF?
 

duncan

Senior Member
Messages
2,240
There are studies, some very recent, that suggest oral abx can be almost as effective. I'm not sure whether I believe them. But I'm also not sure about the purported success rate of parenteral treatment. Each of us responds differently, it seems, so what works well for one may not for the next.

I've seen so many studies make so many claims that did not withstand the test of time that I am almost immobilized by distrust and indecision.lol

I have met with some success in terms of mitigating my symptoms for a time, but those benefits have proven transitory.

So, I'm still at it with my search for a sustainable solution.

I am buoyed by recent efforts like Kim's and Zhang's on the abx treatment front. Also by the Texas A&M efforts that approach persistent post-treatment Lyme from an immune or autoimmune perspective, dovetailing nicely with Aucott's position.
 

paolo

Senior Member
Messages
198
Location
Italy
Thanks @paolo - sounds like you have some promising responses with these antibiotics. Do you think you might have another (or simply a different) bacterial infection to Lyme? In addition to the Lyme diagnosis I received, I have M. Pneumoniae and C. Pneumoniae IgG antibodies, so wonder if they are involved in my symptoms though the the IgM levels are low, and also whether there is something else which hasn't been tested for.

What is your strategy for next steps -- will you continue trying different ABX protocols?

With probiotics, any thoughts on Mutaflor? I did some research on that on the forums, and it seemed associated with a few more positive reports than Ceftriaxone. I will try to summarize what I found in another thread. There were folks that reacted poorly to Mutaflor as well though.

Sounds like you have done great research on antibiotics, thanks for sharing your experience. I will look up what you've described. I don't understand the types of antibiotics or their mechanisms of action at this point.

I'm currently following a wash out period, in order to perform the LTT and other immunological tests. Then probably I will try Penicillin shots (penicillin G 1.200.000 UI, once a week).

I've heard about Mutaflor, but I've never used it.

I have positive IgG for Mycoplasma pneumoniae and a persistent IgM for Chlamydia psittacii. I don't know the numerical value of IgG for M. pneumaoniae, so I can't say what is the role of this bacteria in my symptoms.
 
Messages
44
I can relate @duncan - I am hesitant to start antibiotics when I am hearing of complications like thrush and candida while not finding many people getting sustainably better with the combinations of antibiotics and other treatments recommended by LLMDs.

Do you know of specific forum users who have gotten better and remained so for years to the present? I'm curious why I can't find such folks while I read impressive claims about treatments -- Horowitz for instance says he has worked with 12,000 folks, and 90% were improved. Yet I can't find these people on Phoenix Rising, and I have recently started searching HealingWell's Lyme forums for his patients as well. A few hours of research have yielded nobody. Perhaps I will find them in time?
 
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msf

Senior Member
Messages
3,650
Datadude, if you lived up to your name you would tell us how many patients of Horowitz's you found who hadn't been helped by him. If the answer is none, or one, I would suggest that you are either not looking in the right place, or Horowitz is lying about the numbers of patients he has seen.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
You wont find large numbers of Horowitz patients here because this is an M.E, not Lyme forum. I am a member of lyme FB group and lots of people on there have completely or nearly recovered with antibiotic therapies. The ones I notice have the most recoveries are those who have travelled from the UK to the states and seen Dr's that treat very aggressively.

People who have completely recovered tend not to hang around with sick people, there is no way you will find success stories like that. There is a FB page called Lyme success stories, perhaps that is thee place to look?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Yet I can't find these people on Phoenix Rising, and I have recently started searching HealingWell's Lyme forums for his patients as well. A few hours of research have yielded nobody. Perhaps I will find them in time?
Lyme groups generally do not allow the doctor's full name to be given, only one initial. This will make searching harder. But I agree with @justy, look somewhere like Lymenet or FB groups that are focused on Lyme.

Sushi
 

Hip

Senior Member
Messages
17,824
I was on IV Ceftriaxone for 4 weeks, for Lyme disease. I experienced a rapid and substantial cognitive improvement. But after the end of the therapy I relapsed.

I wondered if this effect was really due to its antibiotic property. Ceftriaxone is well known for its ability to kill spirochetes which are replicating, since it interferes with the syntesis of the peptidoglycan layer (the mechanical support of the cell wall). Nevertheless beta lactam antibiotics (such as ceftriaxone, penicillin, amoxicillin...) are also known to stimulate the glutamate transporter so to reduce exitotossicity due to glutamate.

As you know, exitotossicity due to glutamate is a strong neurodegenerative process which can contribute to cognitive imparment in many neurological illness and brain injuries (such as chronic infections).

So I was unable to determine if the temporary improvment while on ceftriaxone was due -in my own case- to its neuroprotective activity or to its antimicrobial property.

If your improvements in cognition were very rapid, ie, within a day to two of starting the antibiotics, this I think likely indicates your improvements were not due to the antibacterial effect of the antibiotics, but rather to some non-antimicrobial effects, such as in increase in glutamate transporter expression in the brain, which may substantially lower extracellular glutamate levels.

As you probably have seen, there are two threads about the effects of beta lactam antibiotics on glutamate transporter expression:

Rocephin shots

Ampicillin increases GLT-1 expression

If you look at the image in this post in the second thread, it gives the relative potency of various beta lactam antibiotics, in terms of their ability to boost the glutamate transporters.

Penicillin and amoxicillin are the most potent, even more potent than Rocephin (ceftriaxone).

I actually tried taking oral amoxicillin at doses of 4 to 6 grams per day (in three divided doses), but unfortunately for my ME/CFS, this did not seem to help much.


You may also be interested in this post, which lists some other non-antibiotic glutamate transporter expression boosters.
 
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JAH

Senior Member
Messages
497
Location
Northern California
I am doing rocephin IV's now. (Literally, got a bag running as I type this) I am on week 6. I've been diagnosed with Lyme and CFS, though feel more secure about the CFS diagnosis, and am being treated for both. I felt pretty good after the the third week of treatment - mentally felt more alert. Fourth week was tough - very tired, very bad headaches, no appetite. Fifth week was a little easier and sixth week has just begun. I have tried oral anti biotics in the past and they have really hurt me - doxycycline was a killer, and Ketek sent me to the ER - so I resisted doing Rocephin for years. All pain and no gain. So far it has been much easier than the oral anti biotics, but haven't felt much benefit. Have had a lot of trouble with POTs/ balance/ dizziness lately that I was hoping just the saline would alleviate, but it hasn't helped :(

I'll let you know if it helps me.

JAH
 

paolo

Senior Member
Messages
198
Location
Italy
If your improvements in cognition were very rapid, ie, within a day to two of starting the antibiotics, this I think likely indicates your improvements were not due to the antibacterial effect of the antibiotics, but rather to some non-antimicrobial effects, such as in increase in glutamate transporter expression in the brain, which may substantially lower extracellular glutamate levels.

As you probably have seen, there are two threads about the effects of beta lactam antibiotics on glutamate transporter expression:

Rocephin shots

Ampicillin increases GLT-1 expression

If you look at the image in this post in the second thread, it gives the relative potency of various beta lactam antibiotics, in terms of their ability to boost the glutamate transporters.

Penicillin and amoxicillin are the most potent, even more potent than Rocephin (ceftriaxone).

I actually tried taking oral amoxicillin at doses of 4 to 6 grams per day (in three divided doses), but unfortunately for my ME/CFS, this did not seem to help much.


You may also be interested in this post, which lists some other non-antibiotic glutamate transporter expression boosters.

Thank you, Hip. Yes, I know about the effect of beta lactam on glutamate re-uptake.

I took citicoline and alpha lipoic acid too, but with no improvements. Are there any other safe and powerful GLT enhancers to try? May be Pyroglutamic acid? Do you know of any trusted supplier of this supplement in Europe?

I would like to see if with another non antibiotic drug I can obtain the same effect on cognition. As I noted, beta lactam improved also my Orthostatic intollerance. I don't know if exitotossicity due to glutamate can be related to OI.

Now I remember that I had some temporary relief with memantine (Ebixa), wich is a glutamate antagonist, but which also has some dopaminergic effect. However the improvement was only in the first month of use. Then the drug lost its efficacy.
 
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Hip

Senior Member
Messages
17,824
I took citicoline and alpha lipoic acid too, but with no improvements. Are there any other safe and powerful GLT enhancers to try? May be Pyroglutamic acid? Do you know of any trusted supplier of this supplement in Europe?

I get good results from taking arginine pyroglutamate, which has the advantage of easily crossing the blood-brain barrier.

Arginine pyroglutamate 5 grams daily I find works well for reducing my anxiety levels. I think anxiety symptoms may be due to high levels of glutamate in certain parts of the brain, derived from brain inflammation. Arginine pyroglutamate is one of the top supplements listed in my anti-anxiety thread here: Completely eliminated my severe anxiety symptoms with three supplements! Many supplements on that thread reduce brain inflammation, which may then reduce glutamate.

I also tried L-pyroglutamic acid, but I found this did not have any anti-anxiety benefits for me. It was only arginine pyroglutamate that worked. It may be the arginine that provided the anti-anxiety benefits. You can buy arginine pyroglutamate in the US here and here. I don't know anywhere in Europe where you can get it.


 

paolo

Senior Member
Messages
198
Location
Italy
I get good results from taking arginine pyroglutamate, which has the advantage of easily crossing the blood-brain barrier.

Arginine pyroglutamate 5 grams daily I find works well for reducing my anxiety levels.

Thanks so much, Hip. It's very kind of you.

I don't have anxiety issues. I hope arginine pyroglutamate will have the same beneficial effect of ceftriaxone in enhancing my cognition. We'll see.
 

paolo

Senior Member
Messages
198
Location
Italy
@Hip

Since Pyroglutamic acid is converted into Glutamate by 5-Oxoprolinase (link), I wonder whether Pyroglutamic acid might increase exitotossicity due to glutamate, rather than reduce it.
 
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Hip

Senior Member
Messages
17,824
Good question @paolo.

It says here that:
Despite the sound of the name, L-Pyroglutamic Acid is not a potential "excitotoxin" like glutamate. Studies in laboratory animals have not only shown that feeding large doses of this nutrient to newborn mice are harmless, but that direct injection of L-Pyroglutamic Acid into the adult brain causes no negative effects. In fact, an animal experiment demonstrated that L-Pyroglutamic Acid actually protects the brain from glutamate excitotoxicity!

The article unfortunately does not provide any references for that animal experiment, though.
 

Hip

Senior Member
Messages
17,824
The study may be this one. Nevertheless I fear that this supplement maybe dangerous.

Any particular reason you fear it might be dangerous?

Interesting how in the study they gave the rats doses of 0.1 gram per kg, and 1 gram per kg. For humans, that would be equivalent of an oral dose of say 8 grams to 80 grams.

I usually take around 5 grams when I use this supplement.
 

paolo

Senior Member
Messages
198
Location
Italy
But the study showed that pyroglutamate protects against excitotoxicity (excitotoxicity is caused by high glutamate).

The study reported an improvement in memory performances, it says nothing about glutamate level in synapsis. We don't know why there has been the reported improvement, whether it was due to reduction of exitotoxicity or to other mechanisms. Am I wrong?
 

Hip

Senior Member
Messages
17,824
The study reported an improvement in memory performances, it says nothing about glutamate level in synapsis. We don't know why there has been the reported improvement, whether it was due to reduction of exitotoxicity or to other mechanisms. Am I wrong?

I was referring to the unknown study or studies in the article I quoted earlier. That found pyroglutamic acid protects the brain from glutamate excitotoxicity. But we don't know which study this is.