Rocephin shots

[Daffodil]

hi sushi! I did some googling and citicoline is the same thing as choline, which is already elevated in CFS. if I remember correctly, it is a byproduct of cell death or something...? but i also see that it is used for cognitive impairment for some diseases...so I must look into this further..

 

[Sushi]

@Daffodil

Citicoline is different. I'll try to find some more information tomorrow.

Sushi

 

[Hip]

I am not sure of the dose in the rocephin shot. When I go this week I can ask.

Please do, lizw118. Rocephin injections don't seem that expensive (the 250 mg injection for sale here costs under £10), so this is an affordable treatment.

Thanks to your discovery of the benefits of Rocephin for ME/CFS, I am getting interested again in pursuing this idea of using glutamate transporter boosters to treat ME/CFS.

My doctor started giving me shots of rocephin. I have had two so far. After my first shot I felt horrible for the first day or two after but then I felt almost totally well.

lizw118 can I just ask a few questions:

(1) How often are you given Rocephin injections? Once a week?

(2) Did you only feel horrible for a day or two after the very first Rocephin injection, or did you feel horrible for a day after every injection?

(3) When you get each Rocephin injection, how long do its benefits last — that is, after each shot, how long is this period during which you feel almost totally well? Does this period last the whole week, or just a few days?

(4) What ME/CFS symptoms does Rocephin improve? Is it just the brain fog and sound sensitivity symptoms, or does it also improve the PEM (post exertional malaise), so that you don't feel so exhausted after physical or mental exertion?

 

[lizw118]

Please do, lizw118. Rocephin injections don't seem that expensive (the 250 mg injection for sale here costs under £10), so this is an affordable treatment.

Thanks to your discovery of the benefits of Rocephin for ME/CFS, I am getting interested again in pursuing this idea of using glutamate transporter boosters to treat ME/CFS.




lizw118 can I just ask a few questions:

(1) How often are you given Rocephin injections? Once a week?

(2) Did you only feel horrible for a day or two after the very first Rocephin injection, or did you feel horrible for a day after every injection?

(3) When you get each Rocephin injection, how long do its benefits last — that is, after each shot, how long is this period during which you feel almost totally well? Does this period last the whole week, or just a few days?

(4) What ME/CFS symptoms does Rocephin improve? Is it just the brain fog and sound sensitivity symptoms, or does it also improve the PEM (post exertional malaise), so that you don't feel so exhausted after physical or mental exertion?

Hi Hip,
I have only had two shots so far. I will have my third on thursday. So far, the first one hit me really hard for two days after, then I felt great for 5 days. I was still on oral ceftin at the time as well, which is why I think the first week might have been more powerful for me. The second shot did not have as bad of an initial illness period. Maybe just an evening with a headache. However, the effect is not as powerful this week, either. I believe this is because I am no longer on the additional dose of oral ceftin, so I am getting less medicine overall. I am going to talk to the doctor about that this week. However, I am still getting a lot of benefits this week. The rocephin helps with my energy levels and mood as well as the cognitive issues. It helps with overall energy levels as well. So basically it helps with everything. I don't have the classic PEM though. I actually feel okay after I exercise. I just can barely exercise or do anything at all when I am really ill. I bought some Citicoline and took some today. It made me a bit dizzy, but I haven't noticed anything else so far...
I will keep you posted on my Rocephin shots as I progress with treatment

 

[Daffodil]

i have to say that when i went off rocephin, it was more like an infection was spreading because my lymph nodes started to hurt....so i still suspect that improvement cannot be just due to the glutamate effects....but who the heck knows.

the brain was the first to come back, but i am sure that other things would have improved with time...i just felt it.

the dose my doctor was using was 2 grams 4 times a week IV.....if you wanted to inject that amount, its 80 pounds each time you do it....not affordable for me!

some doctors use 1 gram, though....still not cheap...but i am talking about the lyme protocol...if you are using it for glutamate, who knows how much is enough

 

[Hip]

It's interesting that riluzole has been found beneficial for autism,† generalized anxiety disorder, obsessive-compulsive disorder, depression, and bipolar disorder.†

Riluzole has multiple molecular actions in vitro; the two that have been documented to occur at physiologically realistic drug concentrations and are therefore most likely to be clinically relevant are: inhibition of certain voltage-gated sodium channels, which can lead to reduced neurotransmitter release, and enhanced astrocytic uptake of extracellular glutamate.†

Unfortunately riluzole is expensive. Goldpharma sell it for £440 for 56 x 50 mg tablets.

 

[lizw118]

Hi Hip et al.,
I had another rocephin shot today. I talked to my doc about raising the dose. We are going to do two 500 mg shots, 2 x a week. That is 1 gram twice a week/2 grams per week. As Daffodil mentioned, this dosage is in the lyme protocol (I am CDC positive for lyme). I have tried two other supplements on your list this week: the citicoline, and arginine pyroglutamate. Neither gave me the benefits that the rocephin does, sadly. So I don't know what the mechanism is with the rocephin. Maybe it's the antibacterial? Who knows. Then again, the rocphin isn't seeming to hit me as hard as it did the first time. Although I do feel benefits still. It seems to be wearing off a little, though. Not sure if this is because I was on a combination of Ceftin and Rocephin before? It's so hard to tell. I will keep you posted on my progress, though.

 

[Hip]

@lizw118 What doses of citicoline and arginine pyroglutamate did you take?

I find a heaped teaspoon (5 grams) of arginine pyroglutamate works well to combat my anxiety symptoms, and I find also helps calm the "wired" feeling in the brain that you get with ME/CFS.

Arginine pyroglutamate is in my list of anti-anxiety supplements. It is quite possible that these anti-anxiety effects of arginine pyroglutamate are mediated by its boosting effect on glutamate transporter activity, which thus reduces extracellular glutamate in the brain, that in turn lowers the activation of the NMDA receptors. NMDA overstimulation may be the cause of anxiety and "wired" symptoms.

I think I may try higher doses of arginine pyroglutamate, like say three heaped teaspoons (15 grams).


I have also been trying out higher doses of propentofylline in the last few days. I have taken as much as 1,000 mg of propentofylline in one go. Though typically I took 500 mg daily. This more than the 100 mg that I took in my previous experiments with propentofylline.

This higher dose of propentofylline made me feel relaxed, in a comfortable, cozy way, and made me become a little more consciously aware and self aware. Consciously awareness is the very opposite of brain fog.

I am still experimenting with propentofylline. Propentofylline is not too expensive. 60 x 100 mg tablets cost around £25. So if you were to take a 500 mg daily dose, this would cost you £2 a day. That's affordable if propentofylline were to produce significant benefits, and hopefully long term benefits.

Propentofylline is sold as a veterinary medicine used to increase mental cognition in older dogs, but has been used for humans in clinical trials for a number of conditions, including vascular dementia, Alzheimer's, acute ischaemic stroke, and chronic pain syndromes (including neuropathic pain). In this review of phase III trials, of propentofylline for Alzheimer's and vascular dementia, the propentofylline dose was 300 mg taken three times a day, 1 hour before meals.


Note: I would advise never to take propentofylline with tea or coffee or any source of caffeine, because I found this causes adverse effects: one day I took 1,000 mg of propentofylline with my morning coffee, and within 10 minutes felt terrible: I felt oddly light headed as if my brain was not getting enough oxygen. This feeling terrible lasted for around 2 and a half hours. I realized afterwards that propentofylline, like caffeine, is a xanthine derivative, and both propentofylline and caffeine antagonize adenosine receptors. So high doses of propentofylline I think should not be taken with caffeine.

 

[Hip]

@Daffodil @lizw118
There is a pharmacy here that sells generic Rocephin injections at a cost of $120 for 30 x 1000 mg vials.

 

[Daffodil]

@Daffodil @lizw118
There is a pharmacy here that sells generic Rocephin injections at a cost of $120 for 30 x 1000 mg vials.

wow that's crazy cheap!

 

[Ema]

@Hip, how is it going with the propentofylline? Are you still taking it?

 

[Hip]

Just a report on my experiment to try to reproduce @Daffodil's and @lizw118's results in getting dramatic improvements in brain fog and neurological of ME/CFS symptoms after just a couple of days of Rocephin (ceftriaxone) injections/infusions.

Just a recap: my theory is that this temporary remission they both got from ME/CFS neurological symptoms is due to Rocephin significantly ramping up the glutamate transporters, which act to clear extracellular glutamate from the brain.

Rocephin can induce a 3-fold increase of EAAT2 protein expression levels and a comparable increase in EAAT2 transporter activity.† EAAT2 is the main glutamate transporter, responsible for clearing 90% of the extracellular glutamate from the brain.


My Results From Injecting Rocephin:

I injected 1000 mg of Rocephin subcutaneously into my belly area (it was slightly painful, but nothing serious; though the injection area remained slightly sore for several days after).

I came across a couple of studies (here and here) that found that subcutaneous injection of Rocephin is viable, although the bioavailability is around half that of intravenous injection.

I felt a little tired the next day after the injection, and then the day after that I was fine, but no benefits were noticed (ie, my brain fog was pretty much the same, no improvements).

So Rocephin did not work for me in terms of improving brain fog and neurological symptoms, at least at the dose I used. As stated, I took just a single dose of 1000 mg by subcutaneous injection; this is the equivalent of a 500 mg dose of Rocephin taken intravenously.

Though it's possible that if I took a higher dose of Rocephin, and took it for a few days rather than just the single shot I used, I might have seen some improvements in brain fog.


I should also point out that I don't have that much brain fog theses days, as my brain fog has generally improved quite a bit over the last few years. So I am not the ideal patient on which to test the possible brain fog-reducing effects of Rocephin.

 

[Hip]

One other point: this study found that various beta-lactam antibiotics were able to increase the EAAT2 glutamate transporter, including amoxicillin (though Rocephin was the most potent).

So it is possible that those who benefited from Rocephin might also benefit from amoxicillin. Amoxicillin is a very cheap antibiotic which can be taken orally. The maximum daily dose is of amoxicillin is around 4 to 6 grams, given in divided doses.

 

[Daffodil]

One other point: this study found that various beta-lactam antibiotics were able to increase the EAAT2 glutamate transporter, including amoxicillin (though Rocephin was the most potent).

So it is possible that those who benefited from Rocephin might also benefit from amoxicillin. Amoxicillin is a very cheap antibiotic which can be taken orally. The maximum daily dose is of amoxicillin is around 4 to 6 grams, given in divided doses.

my improvements on rocephin did not start right away...it was maybe 2 weeks into the protocol that I felt something. also, it was IV.

I know it normalizes glutamate, but the rocephin also took away my lymphadenopathy and lymph node aching. I am not sure that would happen if it was acting only on glutamate.

 

[Hip]

my improvements on rocephin did not start right away...it was maybe 2 weeks into the protocol that I felt something. also, it was IV.

Ah, OK. I was under the impression that your remission from brain fog and neurological symptoms also occurred within a few days of starting Rocephin, as @lizw118 experienced. But if it took 2 weeks before you noticed improvements in symptoms, this longer timescale perhaps suggests that your improvements were due to bacteria being killed, rather than glutamate reduction. This study indicates that the effect Rocephin has on glutamate transporters occurs very quickly within a day or so.

 

[Ema]

Riluzole is also in my list of medications that ramp up glutamate clearance from the brain. When I was Googling I found a several medications that can increase the efficacy of the glutamate transporters in the brain (glutamate transporters clear glutamate from the brain). These glutamate transporter boosting drugs and supplements are:

My doctor just suggested Riluzole. Looks like it's worth a shot.

 

[Hip]

I was thinking about getting hold of some riluzole, but it's a little on the expensive side for just an experiment. Of course if it worked, that would be a different story.

 

[physicsstudent13]

I started injecting rocephin again and I felt tired and soon after more calm but not really focused. I had a really painful infection for a terrible year I think from a pseudemonas luteola, chryseomonas luteola infection- the pain was horrible and distracting my studies. Does it treat glutamate excitotoxicity? After my tracheotomy I took too high doses of glutamine like 30g a day which might have been bad.

I just need deeper understanding of neurology to not damage my brain further. Plus these drugs probably damage the liver and kidneys and I'm not sure NAC is a good option.

Antibiotics are associated with developing more dangerous resistant infections, I think that's what happened to me, I developed this painful terrible 1 year infection

 

[lizw118]

I started injecting rocephin again and I felt tired and soon after more calm but not really focused. I had a really painful infection for a terrible year I think from a pseudemonas luteola, chryseomonas luteola infection- the pain was horrible and distracting my studies. Does it treat glutamate excitotoxicity? After my tracheotomy I took too high doses of glutamine like 30g a day which might have been bad.

I just need deeper understanding of neurology to not damage my brain further. Plus these drugs probably damage the liver and kidneys and I'm not sure NAC is a good option.

Antibiotics are associated with developing more dangerous resistant infections, I think that's what happened to me, I developed this painful terrible 1 year infection

It's worth noting that Rocephin can cause damage to the gall bladder. My doctor said that some of his patients had to have their gall platters removed after taking it for a while. My gall bladder ached after my first dose, in fact. My own Rocephin treatment benefits started to wear off over time as I kept receiving them and ultimately I ceased the treatment. Maybe I will try again sometime. I don't know.

 

[physicsstudent13]

I probably wouldn't take the rocephin except under a doctor's supervision or you have a life threatening infection.
wow that is a terrible side effect, so at 1g/day it causes gall bladder damage, where is the pain? I would run and see the doctor as soon as possible.
http://www.healingwell.com/community/default.aspx?f=30&m=1539161
I've noticed pain on my left side where my kidneys are. I've been on rocephin at 1g/day for 4 days and I think it's working. I've had kidney cysts for years. I'm not sure but should you not inject this IM into the belly it is supposed to be injected into the gluteal or leg muscle?
I still cannot exhale with asthma which developed after taking 6 weeks of weekly (not daily) azithromycin according to a Prof. David Hahn from University Wisconsin Madison