posted
Need feedback on this... My regular doctor an interist...gave me samples yesterday for me to try.
He does know about my Lyme since he was the one who finally listened to me about my main complaints (last year) & suggested the tick blood panel.
I told him I know the tiredness is from the lyme &/or treatment so I'm a concerned about taking MORE medication.
Today I had an appointment with the specialist who prescribed my cpap...
During our conversation I told her my doctor had given me the samples. She said when I told her I was tired within a few hours after I'm up that she was going to suggest having me try it.
She explained the medication a little more & I feel a little better about trying it.
I'd really like your input...Thanks in advance!
Posts: 75 | From Missouri | Registered: Apr 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Please wait. First, talk to your LLMD about this. Just because some doctor "knows about" you having lyme does not mean she knows about lyme.
Most likely, your LLMD will suggest ADRENAL SUPPORT, not stimulants with potentially harsh side effects.
It could be too simulating - and dangerous - for a lyme patient on many fronts:
1) lyme patients are already over stimulated and often have adrenal exhaustion. Further stimulation can be very dangerous.
2) one part of the immune system is over stimulated in lyme. Any stimulant can make it worse.
3) Dr. B's guidelines say, strickly, to avoid caffeine due to its stimulant nature. Along that line of caution, powerful stimulants drugs should be avoided. Talk to your ILADS-educated LLMD about safe measures to relieve fatigue.
4) The central nervous system for lyme patients is also very much over stimulated. Drugs that increase that could just "fry" or "wire" a lyme patient, causing increased anxiety and, possibly, even seizures.
5) Lyme can cause heart problems. Patients with heart problems are cautioned against taking Nuvigil.
6) Same caution with liver problems and Nuvigil. Many with lyme have liver dysfunction from the lyme toxins.
7) Many of the side effects of Nuvigil are symptoms of lyme. This drug is likely going to intensify lyme symptoms.
NUVIGIL is a federally controlled substance (C-IV) because it has the potential to be abused or lead to dependence. Please use NUVIGIL only as directed and keep in a safe place to prevent misuse and abuse. . . .
. . . What important information should I know about NUVIGIL?
NUVIGIL may cause you to have a serious rash or a serious allergic reaction that may result in hospitalization or be life-threatening.
If you develop a rash, hives, sores, swelling, or trouble swallowing or breathing, stop taking NUVIGIL and call your doctor right away or get emergency treatment.
. . . What are possible side effects of NUVIGIL?
Common side effects of NUVIGIL are headache, nausea, dizziness, and trouble sleeping.
If you experience chest pain, depression, anxiety, hallucinations, psychosis, mania, thoughts of suicide, aggression, or other mental problems, stop taking NUVIGIL and call your doctor right away or get emergency treatment.
. . . What should I tell my doctor before starting NUVIGIL?
Tell your doctor about all of your health conditions including if you have:
history of mental health problems (including psychosis), heart problems or had a heart attack, high blood pressure, liver or kidney problems,
a history of drug or alcohol abuse or addiction, or are pregnant, planning to become pregnant, or breastfeeding.
Women who use hormonal birth control may have a higher chance of getting pregnant, while taking NUVIGIL, and for one month after stopping. Talk to your doctor about other birth control methods while taking NUVIGIL.
. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Are you getting enough REST? Are you on a gluten-free diet? (that will help decrease fatigue) but, mostly, are you being adequately treated for lyme? Have you been assessed for other coinfections, too?
Infection(s) must be treated. Stimulants simply are not adequate to mask symptoms. The CAUSE must be addressed and the body SUPPORTED, not pushed. There are no quick fixes.
posted
Hi, I'm not yet being treated for Lyme. But, I suspect it (seeing LLMD today). I tried Nuvigil about 8 weeks ago for one month and it definitely helped with my fatigue. But, I saw a HUGE increase in my pain symptoms. I plan to talk to my LLMD about continuing Nuvigil, if needed.
One thing I did notice, though, is that, for me, it could be used as needed. So, I'm also going to ask about using it for particularly hard or busy days, too.
Take care.
Posts: 252 | From New York | Registered: Apr 2010
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I have found a strong coffee just as effective as something like Provigil (not sure on Nuvigil...what that is exactly). But I found Adderall to be more effective.
Adderall felt too much like a drug to me, that I thought taking it regularly would be too much stress on my body. So I stick with coffee.
Use whatever helps you, but also listen to what your body wants. Like my body was telling me using Adderall everyday would lead to bad burnout, so I stopped.
A lot of Lymies like Provigil. Good luck.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Provigil didn't do much for me, I could pop one and go right back to sleep.
One thing that seemed to help my fatigue was actually Valtrex. I'd knocked out all of my other symptoms, but I was still crazy tired. So I kept taking that for a month or two after I stopped my antibiotics, and it was a huge help.
I think treating the cause, though, is ultimately going to be more helpful. I'm already treating the direct cause (Lyme), but I'm hoping to talk to my doctor at my next visit about the secondary end of it (I don't sleep well).
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
My LLMD said Nuvigil is ok to take. Nuvigil is the same as Provigil, just longer acting.
Ladycakes, were you ever tested for EBV or other herpes viruses? I have been and am considering hitting the valtrex or another anti-viral.
And, I second, third, fourth what everyone said about treating the cause. See Nuvigil, et al, as things to only get you through, not treatment.
Posts: 252 | From New York | Registered: Apr 2010
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