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Misfit Toy, once again I am really sorry to hear your news! I've been through a milder form of this, where I repeatedly seem to have one aspect of this illness under control, and then something else comes at me right out of the blue. And the pain isn't just pain; it warps your perception of everything, making everything look even worse.
We need to get you better here. It can be done.
Sometimes I wonder if it's because my liver isn't working right. I am a Phase II problem. I don't process things properly. The doctor called the company that did this test and they said it can't really be fixed. That milk thistle can help, but it's a genetic situation.
There are six pathways in Phase II liver detoxification. Do you know which ones aren't working for you, or can you find out? This information can be very useful.
I have been crying lately. I am really tired and just sad. In a lot of pain physically.
The first thing to do is to make sure that you're doing as much for the pain as possible, as that has such a big impact on how you feel. Have you restarted the Topamax at the 12.5 mg level? If not, it's completely safe to do so by now - you should get exactly the same effects as when you first started at that dose.
What about the ketamine? At one point, that was doing you a lot of good. If it stopped working, taking time off from it may have allowed your body to reset, so that you can use it occasionally now.
There are various other things that can be done for severe pain; I'll get to them in a PM that I'll send you (finally) later tonight.
How did I go from CFS to all of these diagnoses in one year and do I even have CFS? I don't even know anymore. I guess it doesn't matter, but it does to me for some reason. I'm trying to understand something that is not understandable.
There's the standard medical view that there's CFS, and then, possibly related to it, there are all these other illnesses which for unknown reasons are piling onto each other, leaving an absolute mess.
But there's no big picture here. I can understand why this matters to you. If this is just all happening for obscure reasons that are impossible to fathom, then how can you hope to understand everything well enough to treat it?
A big picture view would allow everything (or almost everything) to be treated as a single illness, with a single treatment plan that covered it all. In
this post, I described how Dr. Goldstein created the field of neurosomatic medicine in order to deal with this situation. I gave an example of a woman who was being treated by Dr. Goldstein for CFS, and not only did he relieve her of all her CFS symptoms, but the same treatment also cured her of lupus, which Dr. Goldstein was not expecting. But as Dr. Goldstein's development of the field of neurosomatic medicine deepened, he saw more and more how different illnesses were what he called neurosomatic disorders. From his point of view, you have a neurosomatic disorder, which is manifesting in the form of these various illnesses. The liver problem, being genetic, would be outside this model. But you've had that liver problem all your life, and you certainly were a lot healthier than this in the past. So there's quite a bit that can be done using neurosomatic medicine here.
In various places, I've quoted Dr. Goldstein in reporting huge success with his work. But what about me? Starting last summer, I read all 700 pages of his two most recent books, which contain everything you need to know to use his treatments. In August, I started on his protocol. As I am not a doctor and do not have access to the supplies or knowledge that Dr. Goldstein did, I've had to take this protocol very slowly. Nevertheless, it has worked impressively for me. For example, increasing sensitivity to medications over time is a common problem in ME/CFS, and one that I had particularly bad; at various points, I've had to stop taking perfectly good medicines because I became too sensitive to them. I eventually lost the ability to take any antibiotics. In one of his books, Dr. Goldstein mentions, almost in passing, what the cause of this is, and what an effective treatment is. This is one of the first things I starting trying in August. For a long time, it seemed as if I were becoming less sensitive to medication side effects, but it was hard to tell. Finally, yesterday I tried taking NT factor, which I had found great for energy, and which I had used every day until I had a major crash four years ago that left me unable to tolerate it, along with virtually all energizing medications. Yesterday, for the first time since this crash, I was able to take NT factor with no ill effects. And yes, it gave me energy.
Another example is sleep reversal, which is a common malady among people here. By this summer, it was so bad for me that I was typically going to bed at 9 a.m. and getting up at 5 p.m. Then, in September, I added another medication from Dr. Goldstein's protocol to what I was taking, and my sleep reversal vanished literally overnight. Instead of going to bed at 9 a.m., I was getting up at 9 a.m.
These are just a couple of examples, but due to their uniqueness, I think they illustrate the power of Dr. Goldstein's methods well. I'll have more to tell you in that PM.
Going backwards a bit...
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zzz are you a biochemist or a doctor?
I am neither.
Really, how do you memorize all of this?
Necessity. It also helps that I have a good memory. Not as good as before, but still quite useful. Related to that, I should mention that taurine is very helpful for the memory problems that most of us experience. I take 1000 mg of taurine 3x per day.
I wonder if we have a problem with our blood-brain barrier or similar which is causing drugs to make it into our central nervous system. Usually it keeps most things out, so maybe that would explain why we have such strong reactions to even small doses.
It appears that many of us do have a leaky BBB, which often goes hand in hand with a leaky gut. We just leak all over. This definitely can and does cause problems. But that wouldn't explain @
Misfit Toy's problem with Topamax, as Topamax is designed to easily cross the blood brain barrier, since it must do so in order to work.
Instead, a lot of problems with drugs that act in the brain appear to be due to receptor hypersensitivity, specifically hypersensitivity of the NMDA receptor. This hypersensitivity has been posited by many ME/CFS specialists, including Drs. Goldstein and Cheney, Dr. Martin Pall, and Rich vanK. There are probably others as well.
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Misfit Toy I'm so sorry for all that you are going through and I suspect I may have a similar liver issue in the sense that I respond to tiny micro doses of meds and can rarely tolerate the standard doses that a normal adult would take.
I also used to think that this was a liver issue for me too, but over time, the evidence for its being a receptor hypersensitivity issue became overwhelming for me. I suspect that that's what you have too, as it's extremely common among PWME. Dr. Goldstein believes that this hypersensitivity is at the heart of all neurosomatic disorders.
I am on other sites for other illnesses and I can't believe how many people there are. I can't remember any of them, or many. But on here, I feel lucky enough to know people, their names and their stories.
Yes, it's good to remember that. Recalling our good fortune in finding others on this strange path can be very consoling at times. Whenever we recall what we have to be grateful for, that helps. @
Misfit Toy, you have my best wishes for your recovery as always. And I will get that PM to you tonight.
However, what you've been experiencing is not unexpected, and should be easy to fix. 
