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zzz , I don't mind you answering anything here as it is not offensive.
Thank you, @
Misfit Toy, but it's not so much a question of being offensive as simply avoiding confusion by not having two different conversations mixed together. I will definitely post here when I have started the other thread, so you will be able to find it as soon as it's started. This may be a little while, as the time I am able to post here is limited.
Where did you come from and where have you been?
Where I came from is a deep ontological question, the answer to which I do not know.
But I think you're asking more about how I came to PR.
PR has developed rather quickly, at least from the perspective of someone who has been watching the years fly by while mostly bedridden. I came across PR just a few months ago, when I was researching material to present to my doctor. I was very happily surprised to see a lot of information and a lot of leading-edge discussion about ME topics by a group of well-educated people. I have learned a lot from PR these last few months, and for that I am very grateful.
As for where I've been, I haven't been hanging out at any particular forums. I've just been doing research on my own for the 24 years that I've had ME. I subscribe to a number of newsletters, so I've kept fairly up to date that way.
So, I have tried Tagement. I tried it with an asthma med. What is it called?? Singulair. I was knocked into outer space. My immuno thought it would be good because I was convinced I had a mast cell disorder which I ended up not having. I was so drugged and sick and having massive amounts of diarrhea. My doc had me stop it pronto. I am not sure if it was the Tagamet or the combo, but man, was I ever drugged. It took me days to recoup.
Yes, Singulair is generally not a good medicine for those of us who are very sensitive to drugs. I took one dose of it and had a very bad reaction. That was the last dose I ever took. Singulair can cause diarrhea, as well as all sorts of CNS side effects. From the prescribing information:
Neuropsychiatric events have been reported in adult, adolescent, and pediatric patients taking
SINGULAIR. Post-marketing reports with SINGULAIR use include agitation, aggressive behavior or
hostility, anxiousness, depression, disorientation, disturbance in attention, dream abnormalities,
hallucinations, insomnia, irritability, memory impairment, restlessness, somnambulism, suicidal thinking
and behavior (including suicide), and tremor. The clinical details of some post-marketing reports involving
SINGULAIR appear consistent with a drug-induced effect.
And that's only the neuropsychiatric events.
If you ever have to take that type of drug again, I would recommend Symbicort, which is a much more benign drug, and which caused no problems for me.
Tagamet may cause diarrhea, but it does not produce the other side effects you mentioned; However, since it tends to delay the excretion of other drugs, it can make the side effects of other drugs worse. Tagamet is excreted in the urine, so it interferes with the excretion of other drugs that are excreted via the kidneys. This means that it increases the side effects of a different class of drugs than the ones that aren't metabolized properly by your liver. Nevertheless, you can certainly do without more side effects of any kind. So I think that Zantac definitely makes sense to try first here, especially for people with liver or kidney problems. The reason I didn't mention Zantac from the beginning is that there is less documentation on its effects against herpes viruses, and I found one study that claimed it was no better than a placebo when used as a treatment for mononucleosis. However, I have learned to take single studies with a grain of salt (remember XMRV?), and as Zantac is an H(2) antagonist just like Tagamet, and Dr. Goldstein recommends it over Tagamet, I would think that it would work equally well against EBV.
It couldn't have been the Valtrex regarding the Magnesium and it not being detected. I only took it 6 days. That magnesium test was done a year ago while on nothing.
Have you had your kidneys tested since that urine test? If not, I would highly recommend it.
Ketamine..I just started taking it here and there...but not the full dose of 3 sprays a day. It kicked my pain so well, I had to try it again. I am wondering if I could swish the nasal spray in my mouth? I would think if it was okay for my nose and it goes straight to the top, that it would be suitable for swallowing...In a sense, I do swallow it. It runs down the back of my throat.
I would also think that it would be OK for the reasons you mentioned, as long as the nasal spray doesn't have any other ingredients that would irritate your mouth. You might want to try a slightly smaller dose at first; since the reaction is pretty much immediate, you'll be able to tell if the dose is sufficient.
My doc will prescribe anything I want.
You are very lucky in that respect! I wish I had a doctor like that.
Many years ago, a good friend of mine said, "A good doctor is one who will give you what you want." I've learned to appreciate the wisdom of those words, at least in the cases where the patient knows what he or she is doing.
My doc just prescribed Red Marine Algae which is supposed to be good for EBV. I am not sure. All supplements sort of do nothing when it comes to a hardcore virus or bacterial infection.
I took a quick look, and it appears that Red Marine Algae is an effective antiviral against herpes viruses. Interestingly, it's been used for over 2000 years in traditional Chinese medicine (TCM). As this is not a pharmaceutical product, there aren't any definitive clinical trials of it, although there are several studies, such as
this one from 1974, that showed positive results for it. Apparently, there are a number of types of Red Marine Algae, and the effectiveness varies both by type of algae and by type of herpes virus. Some good versions of this algae are solid by iHerb. However, even the best forms of Red Marine Algae have not been reported to clear up herpes outbreaks as fast as Tagamet or Zantac.
I'd try the Zantac first, and if neither it nor the Tagamet could clear up your EBV, I'd give the Red Marine Algae a shot. The Red Marine Algae might also be useful to keep your EBV in check once the current outbreak has been stopped.
Again, thank you so much for your information. You really do know so much and have all of these references which you must keep on file.
Well, I do have a folder where I save useful information, but most of what I've posted in this thread I didn't know a month ago. It came either from Dr. Goldstein's books or from the Google Medical Library.
All the material on magnesium I learned about six months ago, when I did research on it for myself.
PR is an excellent source of material, especially since people are very good about linking to references. Google is also very good; it just takes patience at times. The two most important things with Google are knowing which terms to use in a search, and which sources are most useful. Sources like WebMD are good only if you want a brief overview. Otherwise, sources designed for professionals are best. For drugs, the best single source of information for any prescription drug is the prescribing information, which is what goes into the PDR. If you just Google the drug name and "prescribing information", you should be able to find it quickly. Sometimes, there's some additional information about a drug (such as individual patient reports) that you can find by Googling just the drug's name.
PS..I have a thought..I think with me what happens is, I have phase II liver problems bad. It's a genetic mishap that according to my doc, can't be undone.
Oh, that's really nasty. That means you're a pathological detoxifier. Do you know which of your detoxification pathways aren't working? Although apparently your problem can't be fixed, there are various treatments that can lessen the impact of some of these defects. There's a thread
here on PR about dealing with problems in the sulfation pathway.
I think meds get stuck in me. They stick around because I can't detox them and they build up and I suddenly get super sick.
This would be true for drugs that are metabolized and/or excreted by the liver. If you stick with drugs that don't depend on the liver to be metabolized and that are excreted mainly or solely through the kidneys, you should be able to avoid a lot of the drug side effects. That assumes that your kidneys are working properly, though, which you may need to check out.
The Ketamine was working good and then BOOM...not so much. Why? My liver. I can't clear it and I started mixing other meds with it and my body went nuts.
Ketamine and its metabolite norketamine are normally excreted almost entirely by the kidneys. The problem is that a healthy liver gradually metabolizes ketamine into norketamine, which is only about one third as active as ketamine. If your liver isn't doing this, then you have more of the stronger version of ketamine in your body than healthy people.
Since the excretion route of both ketamine and norketamine is through the kidneys, it seems that you could ameliorate this problem simply by taking a somewhat smaller dose of ketamine. But since the half life of ketamine is rather short (2.5 hours), you shouldn't have to reduce the dose by much. Overall, I think that the pharmacokinetics of ketamine are such that your liver problem shouldn't be causing you much trouble in this case.
I'm curious about the Tagamet. So obviously Tagamet and a PPI such as Nexium work in a much different way but both reduce stomach acid. What is it about Tagamet that gives it an antiviral property? Sounds like I have some reading to do.
Tagamet is an H(2) antagonist, which means that it blocks the histamine(2) receptors. Nexium is a proton pump inhibitor. Both reduce stomach acid, but the acid reduction has nothing to do with the antiviral action. Only the H(2) antagonists have antiviral properties. Please see the link from my original thread on this for further details.
