posted
Has anyone developed Reynaud's disease from this lyme trek?
Over the past several months, a few of the ends of my fingers will turn white and go numb and tingly.
Has anyone experienced this? If so, does it go away with treatment, etc.?
I have been ill for 3.5 years and in treatment for 3 years...this is a newly developed symptom for me to add to my ever-growing list.
Four years ago I was running triathlons...Ugh...
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Yes. I got sick in 2006. Reynaud's started then, never had it before that time. I still get it and I'm still sick. Don't mean to be a downer, just the truth. Still searching for wellness, though my hopes are diminishing. Posts: 566 | From West Coast | Registered: May 2008
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tickssuck - Unfortuately my hopes are diminishing as well...ugh....
Lymetoo...wonderful!
I hate Hate HATE this disease!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Oh, triathletelymie, please don't give up. I've been there a lot myself, but I am getting better now.
I've had Raynaud's since I was a kid. Still have it. It was only diagnosed in adulthood. From the blasted Lyme, of course. There's a thread on it from just the other day with a number of people chiming in.
Have you thought about IVIG? That may help you, along with everything else. Talk to your LLMD about it. You would have to be evaluated by a specific neurologist for it---or immunologist. But I bet you'd qualify for the neurological diagnosis.
Posts: 3771 | From around | Registered: Mar 2008
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My daughter was diagnosed with "atypical" Raynauds (her hands/fingertips turned greenish/ white and tingled). It went away towards the end of her Lyme treatment.
Posts: 520 | From Maryland | Registered: Jan 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Tri- I developed Reynaud's too. Tips of fingers and toes. I mostly notice it affecting me in the mornings. After a hot shower, the color comes back.
I have also had instances of this happening in the refrigerated section of the grocery. TBI's affect the small blood vessels.
Are you taking anything to thin the blood? Lumbrokinase? Serrapeptase? Nattokinase? This may help. My cardiologist has a treatment that grows new small blood vessels: http://www.heartfixer.com/IndexEECP.htm
Small vessels are affected by infection, unfortunately. But doesn't mean that there aren't ways around it.
So hard to live with this illness when we were formerly top notch athletes- and can no longer do what our bodies are accustomed to. Best!
Posts: 3975 | From usa | Registered: Aug 2007
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I have had lyme since age 3 most likely (47 years)...and I have had Raynaud's most of my life.
My feet, hands and nose are almost always cold. Sometimes some of my toes turn pure white. The numbness is fun too - NOT!
Hang in there!
Posts: 416 | From Southeastern PA | Registered: Sep 2003
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Raynaud's hit me just about the time "mono" did in college (in frigid Wisconsin, of course). Looking back, the "mono" likely included lyme that would take decades to then be diagnosed after ruining my entire adulthood.
It's really not all that uncommon with lyme. Just do some cross-searches with "borellia" and see many past threads here at lymenet about it.
There are things that can help, though. A LL ND might be have access to that knowledge. Stinging Nettle helps me with Raynaud's. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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I am not formally diagnosed with Raynaud's, but I have had cold hands and feet since my early 20's which has worsened.
I would be fine in the summer, but as soon as the temperature drops below a certain threshold (about 70�) my hands get frigid.
Posts: 922 | From Philadelphia | Registered: Sep 2012
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For me, it's a case of which came first....I'm unsure. Raynaud's causes such pain at times. I bought some fingertip-less compression gloves that help me cope; I got them on eBay for about $17.
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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