I'm wondering if anyone knows of a good telemedicine doctor? I've been looking online for weeks, and not sure I've found one that seems knowledgeable. The more natural NDs or MDs want to address everything with vitamins or herbs, and I just cannot tolerate them. I've been prescribed various ones over the years, and they do not agree with me. I am looking for someone that might test and treat any hidden infections. That is most what I FEEL like is wrong based on how I feel.
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Telemedicine doctor??
- Thread starter sue1234
- Start date
My ME feels a lot like a chronic infection, and parts of my immune system are probably (mal)functioning as though it were responding to an infection, but my guess is that I don't have an active infection and that the problem is that part of the immune system is simply locked into an abnormal state. Some people here have reported a reduction in symptoms from treatments for infections, but such benefits seem to be rare. I think we all wish that ME/CFS was just an infectious agent, because that would mean it could be identified and treated. You can try to get tests to show whether you have an active infection, but don't be too surprised if none show up.
As for vitamins and herbal remedies, we all seem to respond differently to them; that's just part of ME/CFS. Some people report reductions of symptoms from something, and others report worsening of symptoms from the same thing. One thing I recommend is keeping a journal of food (and supplements and treatments), activity and symptoms. That way you can look back to verify whether something has a repeatable effect. If you identify something, you can then try to figure out what it's doing, and what other substances might have similar effects. For example, I learned that herbs and spices that are peroxynitrite scavengers make my symptoms worse. B2 and B3 make my symptoms worse. My observations of what makes me feel worse, and experiments to identify the active compounds, has led me to avoid quite a few foods, which thus reduces the days when I feel worse.
Getting prescriptions for ME/CFS symptoms are kind of pointless, because no one knows what is malfunctioning in our bodies, so how can anyone know what will fix that? The prescriptions based on symptoms (fatigue, etc) are for people with other disorders. You can probably make as good guesses for things to try as any professional doctor.
As for vitamins and herbal remedies, we all seem to respond differently to them; that's just part of ME/CFS. Some people report reductions of symptoms from something, and others report worsening of symptoms from the same thing. One thing I recommend is keeping a journal of food (and supplements and treatments), activity and symptoms. That way you can look back to verify whether something has a repeatable effect. If you identify something, you can then try to figure out what it's doing, and what other substances might have similar effects. For example, I learned that herbs and spices that are peroxynitrite scavengers make my symptoms worse. B2 and B3 make my symptoms worse. My observations of what makes me feel worse, and experiments to identify the active compounds, has led me to avoid quite a few foods, which thus reduces the days when I feel worse.
Getting prescriptions for ME/CFS symptoms are kind of pointless, because no one knows what is malfunctioning in our bodies, so how can anyone know what will fix that? The prescriptions based on symptoms (fatigue, etc) are for people with other disorders. You can probably make as good guesses for things to try as any professional doctor.
The reason I asked specifically for a doctor that might hunt down hidden infections is, twice in the last two years I've had to take an antibiotic for a sinus infection. After taking the antibiotics, that fatigue/malaise that I chronically had had disappeared for a while(weeks/months). I don't have chronic sinus issues, so not related to that(unless it is a hidden sinus issue that hasn't been spotted by the doctors or have usual signs). I suspect some other hidden infection.
Sushi
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Depending on what country you are in, a doctor may have to see you face to face in order to order tests or prescriptions. After an initial visit, some are willing to work with you by phone or Skype.
@sue1234 , the antibiotics might be affecting your gut ecology, killing off something that is causing inflammation. You might try changing your diet to alter gut ecology: high fibre, probiotics, or whatever. If you look back at the herbal remedies that altered your symptoms, are they known as strong antimicrobials? Some might kill off the good bacteria that keep the problem bacteria in check. It's just a possibility to consider.
Judee
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Have you mentioned to this doctor that you feel better after the antibiotics? Maybe he or she would work with you on that. One of the bloggers here has a post on the top ways people seem to recover and one of them is called the Rickettsia/Jadin approach which is long term treatment with tetracyclines.
He himself had one period of remission on this treatment and talks about another person who has so far had 100% remission. Here is that post: https://forums.phoenixrising.me/index.php?entries/a-reader-report-—-100-elimination-of-symptoms.2441/
Perhaps if your doctor is willing to work with you, you could possible get a copy of the protocol to share with him as this blogger did with his doctor which he documented on his website here: https://cfsremission.com/my-story/
Edit: I just remembered that he mentioned one of his doctor's names in the post and looking at that now I see he has her name highlighted as a link. When I click on that it takes me to here: http://www.functionalmedicinenw.com/
Not sure if they do telemedicine or not but you could research it and/or give them a call.
Oops--sorry, when I look around the site it doesn't look like it but maybe you could do a google search for a functional medicine doctor. They seem more open, I've heard, to working with our condition.
He himself had one period of remission on this treatment and talks about another person who has so far had 100% remission. Here is that post: https://forums.phoenixrising.me/index.php?entries/a-reader-report-—-100-elimination-of-symptoms.2441/
Perhaps if your doctor is willing to work with you, you could possible get a copy of the protocol to share with him as this blogger did with his doctor which he documented on his website here: https://cfsremission.com/my-story/
Edit: I just remembered that he mentioned one of his doctor's names in the post and looking at that now I see he has her name highlighted as a link. When I click on that it takes me to here: http://www.functionalmedicinenw.com/
Not sure if they do telemedicine or not but you could research it and/or give them a call.
Oops--sorry, when I look around the site it doesn't look like it but maybe you could do a google search for a functional medicine doctor. They seem more open, I've heard, to working with our condition.
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I always got better on antibiotics also, I do think it was because I had such bad SIBO and GI issues.
I've looked into antibiotics for the gut but it seems that people get into vicious cycles with them and have to take them again, again, again ...
Are you on an acid blocker PPI drug? That was one of the big problems for me, I had to get off Prilosec and stay off of it. I get gastritis and my stomach hurts a lot sometimes, but I just can't be back on the PPI drugs, they do too much damage to the kidneys and the rest of my body and small intestine. I had to give up coffee though **cry**
I've looked into antibiotics for the gut but it seems that people get into vicious cycles with them and have to take them again, again, again ...
Are you on an acid blocker PPI drug? That was one of the big problems for me, I had to get off Prilosec and stay off of it. I get gastritis and my stomach hurts a lot sometimes, but I just can't be back on the PPI drugs, they do too much damage to the kidneys and the rest of my body and small intestine. I had to give up coffee though **cry**
Carl
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I came across the following site while searching for info on biofilms. From the info that he posts, he seems more advanced than most and I doubt that he gives all the info in the info that he posts to his site so he probably knows quite a bit more. There is more info as I have discovered. He does seem to do some distance treatment but I do not know whether or not he needs to see the patient at first. There are some reviews by his patients on the website.
http://www.advancedhealing.com/
http://www.advancedhealing.com/
I have spent years trying to alter my gut ecology. I don't handle a lot of fiber and definitely don't handle probiotics. I would think maybe what you are saying is a factor regarding gut bacteria, but, I've taken Xifaxan separately a few times for SIBO, and I don't get that effect of making the fatigue going away with it.
I do get bad bouts of SIBO, but when I've taken Xifaxan for that, I don't get the same benefit of less fatigue that I do with the other, systemic antibiotics. I don't ever take any acid blockers.
OH NO! I can imagine how horrible to have to give up coffee!
With that, it's less likely to be gut-ecology related, but it doesn't rule it out entirely. My ME started out with type IV food sensitivity, which remained despite drastic diet changes and several types of antibiotics (for tooth infections). Then I got a moderate case of food poisoning from bad coconut milk, and the type IV sensitivity disappeared. I assume that it made a drastic change in my gut ecosystem allowing the good bacteria managed to eliminate some bad bacteria. If you can't find another explanation for why antibiotics reduce your symptoms, keep this one in mind as a possibility. I'm not sure how to safely replicate the spoiled canned coconut milk treatment...