Rocephin shots

lizw118

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Hi all
I have CFS and lyme and a host of other related issues (adrenal, thyroid and sinus problems). 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. I believe a lot of my issues are in my brain, and maybe my brain might be swollen(?) I now even think that my sinus issues might be tied to the brian swelling. At any rate, the rocephin and the flagyl that I am already taking seem to be really helping. Does anyone else have experience with this? I am certainly not expecting this improvement to last, but it's nice while I have it. Is there anything else I can do about brain inflammation?
 

Sushi

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Hi all
I have CFS and lyme and a host of other related issues (adrenal, thyroid and sinus problems). 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. I believe a lot of my issues are in my brain, and maybe my brain might be swollen(?) I now even think that my sinus issues might be tied to the brian swelling. At any rate, the rocephin and the flagyl that I am already taking seem to be really helping. Does anyone else have experience with this? I am certainly not expecting this improvement to last, but it's nice while I have it. Is there anything else I can do about brain inflammation?
Interesting that you were getting rocephin injections. What is the difference in effect between getting injections and getting it IV?

Sushi
 

Daffodil

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hi liz. i have been severely ill for over 20 yrs and just tried a few weeks of IV Rocpehin. my fog has been unbearably horrible throughout my illness, and the Rocephin almost made my brain normal again. I was crying - couldnt believe how much it helped me. Unfortunately, I had severe diarrhea on it so I couldnt stay on it too long.

Maybe it is killing Borrelia or doing something else? I know it is neuroprotective / anti-inflammatory and i was reading about how it even helps curb cocaine addiction....so who knows why it is working.

Since I have been off it, all my fog is back, my neck and lymph nodes ache like crazy and I am miserable again - even though I am on an oral alternative now (Ceftin).

xoxox
 

lizw118

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Interesting that you were getting rocephin injections. What is the difference in effect between getting injections and getting it IV?

Sushi
Hi Sushi,
I'm not sure what the difference is. My guess is maybe that the shots are less frequent and maybe there is less of the medication delivered into the system than with an I.V. I don't want to do I.V. ABX if I can avoid it so I like the shots. Did you ever try Ceftin?
Liz
 

lizw118

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hi liz. i have been severely ill for over 20 yrs and just tried a few weeks of IV Rocpehin. my fog has been unbearably horrible throughout my illness, and the Rocephin almost made my brain normal again. I was crying - couldnt believe how much it helped me. Unfortunately, I had severe diarrhea on it so I couldnt stay on it too long.

Maybe it is killing Borrelia or doing something else? I know it is neuroprotective / anti-inflammatory and i was reading about how it even helps curb cocaine addiction....so who knows why it is working.

Since I have been off it, all my fog is back, my neck and lymph nodes ache like crazy and I am miserable again - even though I am on an oral alternative now (Ceftin).

xoxox
Hi Daffodil,
Same here. I had a really positive reaction in terms of cognitive abilities, mood, and head/sinus ache pressure issues. My hearing even improved after the initial bad symptoms. I wish I could find a medication that I could stay on long-term that has these effects. I am so sorry about the diarrhea. Is the ceftin helping? I took Ceftin before the Rocephin and it also helped, although not as dramatically as the shots. Would increasing the dose help you, do you think? Or do you think it is the difference in the drug itself.
Where did you read about the neuroprotective anti-inflammatory stuff? Is there anything else that does that?
I wonder how long we can stay on this stuff? Did your doctor tell you?
 

Sushi

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Hi Sushi,
I'm not sure what the difference is. My guess is maybe that the shots are less frequent and maybe there is less of the medication delivered into the system than with an I.V. I don't want to do I.V. ABX if I can avoid it so I like the shots. Did you ever try Ceftin?
Liz
I haven't tried Ceftin. I am being treated for Bartonella and that is done differently from Borrelia.

Sushi
 

Hip

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This is very interesting.

On my computer, I made some notes to myself about ceftriaxone (Rocephin) theoretically being able to improve ME/CFS symptoms. This is by virtue of the fact that this antibiotic drug increases the expression and activity of the GLT-1 (EAAT2) glutamate transporters in the brain, and thereby enables these glutamate transporters to pull excess glutamate out of the brain. This reduces glutamate toxicity and glutamate overstimulation in the brain. Refs: 1 2 3

I think this may explain why ceftriaxone has improved your brain fog and ME/CFS symptom, @Daffodil and @lizw118.

@Marco may want to comment on this.

More info on glutamate and ME/CFS: Dr Paul Cheney's views, Marco's blog about glutamate causing ME/CFS symptoms, and my post on how neuroinflammation-derived glutamate may cause generalized anxiety disorder.
 
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lizw118

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Hi Hip, I had a metametrix ION Profile test some years bad that showed excitotoxicity in my brain from glutamate, I think (if I remember right). So yes, this does make sense. I have noticed a drug called Riluzole mentioned in some articles about this problem in other conditions. Riluzole apparently inhibits the release of glutamate in the brain--it's being used for ALS. I wonder if a drug like that would help us and if so, is it a safe drug to take? Or is there an anti glutamate type drug that is safe longterm? I believe I have seen some other posts of yours about this which have been very helpful about certain supplements like magnesium which help you, right? You should definitely try rocephin if you can.
 

medfeb

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Interesting that you are getting both Flagyl and Rocephin.

My son did 90 days of IV Rocephin and it did not help. But I saw a Lyme doctor at the Stanford meeting and she said that it was necessary to go after the three forms of Lyme at once - she used Rocephin and I am pretty sure she said flagyl plus one other antibiotic. I'm wondering if the combination is important.
 

Daffodil

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yes....i was also reading that one should take something else with the Rocephin....for the "cyst form" of bacteria, or something..?

if rocephin's positive affect is from normalization of glutamate levels, would it take weeks to work? it took a while for me to notice a change.

i have no idea how long you can stay on rocepin but i think after 6 weeks, there is probably some risk of C Diff infection...but i am not sure about this or whether probiotics might curb this risk (i cannot tolerate most probiotics). i have heard of people staying on it for several months.

i told my doctor that i am a lot worse after stopping the rocephin and he today recommended i add doxycycline to the ceftin. however, doxycycline caused me intolerable diarrhea in the past so he will likely suggest minocycline instead, as in the past.

i wish i knew exactly why rocephin works so well while you take it :-/
 

Hip

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Riluzole apparently inhibits the release of glutamate in the brain--it's being used for ALS. I wonder if a drug like that would help us and if so, is it a safe drug to take?
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:

Glutamate Transporter Boosting Medications

Propentofylline increases the expression of both the GLT-1 and GLAST glutamate transporters expression in vitro, and significantly enhanced glutamate uptake in astrocytes. 1 2 Propentofylline oral bioavailability is only 4%. Propentofylline half life of 15 – 45 minutes.

Note that the study used high concentrations of propentofylline (100 microM), which would equate to very high human oral dosages of 30 grams of propentofylline (taking into account the low 4% bioavailability). Transdermal application of propentofylline would be the best idea, as this avoids the first-pass metabolism, but the very high dosage of 30 grams probably makes propentofylline unusable for practical purposes for enhancing glutamate uptake.

Riluzole (a drug for ALS) at a dose of 160 mg elevates GLT-1 glutamate transporter expression and activity. 1 2 Riluzole bioavailability is 60%. Riluzole half-life is 12 hours. Riluzole costs around $1.50 for a 50 mg tablet.

Ceftriaxone (Rocephin) an injectable beta-lactam antibiotic that increases GLT-1 glutamate transporter expression and activity by a factor of 3, which is a huge increase.1 2 3 4 5 6 Ceftriaxone half life is around 7 hours. A single 500 mg ceftriaxone injection costs around $14.

Amoxicillin is a beta-lactam antibiotic that increases GLT-1 glutamate transporter expression by 500%. 1 Amoxicillin is quite cheap: you can get 500 x 500 mg capsules for around $60.

Citicoline (a cognitive enhancing supplement) at a dose of 2000 mg per kg in rats increases glutamate uptake and increases the expression of the GLT-1 glutamate transporter in cultured rat astrocytes. The equivalent human dose would be 323 mg per kg, which would work out to a 26 gram oral dose for an 80 kg human (which is far too high to make it viable). 1 Citicoline bioavailability is virtually 100%. Citicoline half life is 3.5 hours.

Valproic acid at a dose of 100 mg per kg in rats increased the expression of glutamate transporter GLT-1 after stroke. 1 The equivalent human dose would be 16 mg per kg.

Alpha lipoic acid at dose of around 270 mg to 1370 mg increases glutamate uptake by 20%. 1 Alpha lipoic acid bioavailability is around 30%. Half life is around 30 minutes.

Pyroglutamate stimulates glutamate transporter activity. 1 2 Pyroglutamic acid is available as a supplement. Arginine pyroglutamate is also available as a supplement.

Morphine withdrawal increases glutamate uptake, and increases the expression of the glutamate transporter GLT-1 in the hippocampus. 1 (This might potentially explain why some ME/CFS patients experience major improvements in their symptoms the in the days after taking opioid pain killers, but not during the opioid treatment. See this thread for more info of this interesting opioid effect).

Low-dose naltrexone may increase astrocyte glutamate transport. 1

Reactive oxygen species hydrogen peroxide and peroxynitrite impair glutamate transport into astrocytes. 1

Intranasal insulin?
Insulin increases the expression of the GLT1 glutamate transporter in cultured astrocytes. 1



Factors that Reduce Glutamate Transport and Clearance

Low oxygen, due to inadequate blood supply (ischemia), raises glutamate levels.

TNF-α, IL-1β and IL-6 reduce clearance of glutamate.

4-hydroxynonenal significantly impair glutamate uptake. 1 4-Hydroxynonenal is generated in the oxidation of lipids containing polyunsaturated omega-6 acyl groups, such as arachidonic or linoleic groups.



Glutamate Transporter Nomenclature

Glutamate transporter (GLT-1) is also called the excitatory amino acid transporter 2 (EAAT2). Glutamate aspartate transporter (GLAST) is also called the excitatory amino acid transporter 1 (EAAT1). GLT-1 plays the predominant role in regulating extracellular glutamate; it is responsible for clearing 90% of the glutamate from the brain.

I tried propentofylline 100 mg x three times a day, but did not notice any benefits. However, the amounts used in the study cited above work out to an equivalent oral dose of 30 grams for a human being, which I think is probably far too high (there may be severe side effects) and would be too expensive, since propentofylline is sold in 100 mg tablets. Propentofylline is in fact a medicine used for dogs; the dog oral dosage is 10 mg per kg.

In terms of mitigating the effects of high glutamate (which acts to over-activate the NMDA receptors), high dose transdermal magnesium is useful, as magnesium blocks the NMDA receptors.
 
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Hip

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By the way, what dose of injectable Rocephin did you take, lizw118? I looked online and found that Rocephin comes in 125 mg, 250 mg, 500 mg and 1000 mg size injections.
 

lizw118

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By the way, what dose of injectable Rocephin did you take, lizw118? I looked online and found that Rocephin comes in 125 mg, 250 mg, 500 mg and 1000 mg size injections.
Hi Hip, your list is very helpful. Did you try any of the other medications? If so, did you get any benefit? I am inclined to try the citocoline since it's OTC.
I get a magnesium shot at my doctors which also helps my symptoms. I try transdermal, too, but it doesn't do as much for me. Maybe I should put more on.
I am not sure of the dose in the rocephin shot. When I go this week I can ask.
It's too bad the ALA dose is so high to affect the glutamate (according to your list). I worry about getting mercury into my bloodstream with that kind of dosage.
I will let you know what I find out re dose.
Thanks
 

lizw118

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If one takes rocephin injections rather than oral rocephin, then would the detrimental side effects of gut bacteria stuff be alleviated? Is it safer to take long term that way?
 

Daffodil

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hi lizw. I think it is still unsafe. but not everyone gets diarrhea. 2 doctors told me neither of their patients ever reported diarrhea - that I was the only one. also, they tried rocephin in ALS...I assume they were going to give it long term if the trial had worked out.....maybe if you are OK with it, you can just take probiotics with it and keep taking it.??...however, if it is targeting a bacteria, the bacteria could become resistant and then you would be n trouble.
 

Sushi

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hi lizw. I think it is still unsafe. but not everyone gets diarrhea. 2 doctors told me neither of their patients ever reported diarrhea - that I was the only one. also, they tried rocephin in ALS...I assume they were going to give it long term if the trial had worked out.....maybe if you are OK with it, you can just take probiotics with it and keep taking it.??...however, if it is targeting a bacteria, the bacteria could become resistant and then you would be n trouble.
Why not give citicoline a try? It if does what it is supposed to, it might give you the same relief.

Sushi