i curently take 20mg of dexedrine bid 20mg in the am and 20mg towards noon and it works well at that point but drops drastically. would it be out of line to ask my dr to incres another 20mg dose at around 4pm ? does this seem like much? or what other colul i get a suggestion on another med vyvanase vs adderal vs cytolert ritalin extented? i have tried progil in the past with not much relief..what really works? a combinatin of extendedrelease with immediate release? im just so so worn physicaly n mentally with my cfs dx 1988 thankyou!!!!
Hi ! You've had CFS a very long time, like me. I am not familiar with any of the medications you are taking, as my specialist decided to prescribe a pathogen killing treatment for me instead. Here is a link to our Health Pages and I list various treatment plans, written by the fibro/CFS experts... some of them who have had (?) CFS or fibro themselves.
yes i have tried many supplements over the years. i get very nauseated with them, which is strange because i dont really with perscribed medications even if i take them on a full stomach, b vitamins gives me a headaches as well. but alot of meds and supplements make me drowsey even tylenol. so since i fight overwhelming fatigue all the time its so frustrating!!!! i have to keep alert and have the energy to take care of my patients fully its important to me but when fatigue hits its a nightmare because my whole body is heavy my mind is heavy and its torture just to walk to thier rooms which is not fair to the sick people at all. havent tried antivirals any suggestions? i so appreciate your response thank you please anyone else? with anything thats works for you. or what ur day is like to cope?
Below is one of my responses to a member in the EBV forum who was just diagnosed with CFS. His physician had prescribed him an antiviral and he didn't have much success.
I am being treated for a bacterial infection and having success with that treatment. Antibiotics or natural formulas are all you need. However... I'm not going to lie to you. Treatment may take years (depending on how long you've been ill and how many co-infections you may have) and treatment can make you feel worse. But anyhow... these are things you may want to consider speaking to your physician about and especially if you find yourself in a situation where you feel like you are only treating your symptoms and not the illness and you are getting worse.
The problem is... many antivirals do not work for CFIDS patients. However, there is a research drug called Ampligen that has helped many patients with CFIDS. The problem ? It cost $20,000 a year and I believe it still isn't FDA approved. Also, this is something that I believe you need to take for the rest of your life.
Another option would be Valcyte, another antiviral. Many physicians are hesitant to prescribe this drug for their patients because it is such a powerful drug. It is so powerful that it lowers your white cell count and other labs. I could just imagine taking this medication and then catching a cold. Yikes ! Dr. Jose Montoya at Stanford University had a successful outcome for his first research trial using Valcyte. I believe the results of his second study are still pending. Treatment on this medication is only about 6 months.
Lastly, two-thirds of CFIDS patients have bacterial infections. Another thing to think about is if you are one of these people who have L-form bacteria, then it probably wouldn't be a good idea to take antivirals. Testing for this sub species (and others) mycoplasma is not easy and insurance may not cover the expense. Some physicians would just prefer to prescribe antibiotics and see if their patient has any herxing symptoms. Other physicians will order a vitamin D level, along with a vitamin D 1,25 hydroxy and look for vitamin D dysregulation (Marshall Protocol). I believe Dr. Marshall says that vitamin D dysregulation is due to intracellular bacteria.
I hope this helps ! Here are some links for you, so you can discuss these options with your physician:
Anti-viral treatments for Chronic Fatigue Immune Dysfunction Syndrome:
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