posted
Has anyone felt tremor-ish, dizzy, and extra tingly when taking a prescription stimulant medication?
I've been treated with and helped by stimulants for ADD and Narcolepsy since I was a child. I was first tested for lyme (seropositive) as a teenager. I was on stimulants back then, and never felt like this.
Almost 10 years later, I got another tick bite and contracted lyme in 2012. Now, a year and a half after that, I'm still fighting this second lyme infection. I've had to go off all stimulants (first I was on Vyvanse, then I went to Nuvigil with no luck) because I find they make my lyme symptoms, especially tingling, dizziness, and feeling tremorish, noticeably worse. My LLMD seems skeptical of this. He has encouraged me to stay on them. I never had these symptoms from vyvanse or nuvigil before.
I'd love to hear feedback from anyone who has maybe had similar experiences or thoughts. Thanks!
-------------------- N/A Posts: 6 | From New Mexico | Registered: Jul 2013
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posted
I took Provigil for the extreme fatigue and had no issues.. It helped fatigue somewhat but did nothing for the Narcolepsy.
Posts: 245 | From Texas | Registered: Jul 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Your "LLMD seems skeptical of this." (end quote)
Are you certain he is really an LLMD? ILADS educated? If so, he should understand that any stimulant can cause the issues you experience.
We aren't even supposed to consume caffeine, for crying out loud, it's just too stimulating for someone with lyme. Lyme brings all kinds of issues regarding overstimulation from the toxicity of it. Adding anything of stimulant nature, whether Rx, supplement or food can spell misery.
Now, it may be that if you had better adrenal support, it would be a good balance.
What kind of liver support -- and what kind of adrenal support - does your doctor have you taking? [Rhetorical question. No need to reply. See below.] Most good LLMDs will have good attention to both categories.
GLUTEN CONNECTION to NARCOLEPSY
I might assume you are gluten free as there has been a noted connection with narcolepsy and gluten but not every doctor on the planet knows this yet, so they have not shared it with their patients.
But, Provigil contains gluten (or at least did the last time I checked). Many Rx do, actually. And even a trace matters.
The food additive thread in next set has lots of detail about gluten. The best thing I did to nearly rid myself of "sudden" narcolepsy attacks was to go gluten free.
I still have many cognitive issues with long time untreated lyme / TBD but I'm not collapsing & passing out all the time as when on gluten. It may not be the full ticket but it has helped many.
Most LLMDs strongly suggest their patients all be gluten free. Some have been found to be celiac (myself) . . . but even for those who are not, going gluten free offers a better chance to succeed with lyme treatment.
The HLA-DQB1 gene provides instructions for making a protein that plays a critical role in the immune system. The HLA-DQB1 gene is part of a family of genes called the human leukocyte antigen (HLA) complex.
The HLA complex helps the immune system distinguish the body's own proteins from proteins made by foreign invaders such as viruses and bacteria. . . .
. . . How are changes in the HLA-DQB1 gene related to health conditions? . . .
celiac disease - increased risk from variations of the HLA-DQB1 gene . . . .
narcolepsy - increased risk from variations of the HLA-DQB1 gene . . . . -
[ 01-07-2014, 09:53 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- To help you better tolerate the toxicity of lyme and treatment stressors:
Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
Only Mycoplasma. I was negative for all other coinfections. Also negative for Celiacs. But all of the links shared on this thread have been very helpful- thank you!
I'm getting more interested in pursuing the mycoplasma. I'm starting on Zithromax next. I've also been testing positive for species-specific lyme bands on the WB for over 10 years (3/3 Western Blots, always different bands though), so it's hard to say what caused what in my case in regards to CNS symptoms....
-------------------- N/A Posts: 6 | From New Mexico | Registered: Jul 2013
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posted
I have found that when I take resveratrol, my numbness really increases. LLMD's office told me to stop taking it.
I have like 3 unopened bottles of the stuff. I am pretty annoyed about the whole thing.
Posts: 832 | From Somewhere | Registered: Nov 2010
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