hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hello lyme fighters,
My teenager was outside playing barefooted last night. When he came inside the bottom of his feet and his toes were WHITE, not purple, not pink, but pure white.
They stayed this way at least 5 minutes. I had him put his feet in warm water & they eventually regained their normal color.
This cannot be healthy for the tissue in his feet. The affected parts appeared completely devoid of circulation.
Does this sound like it could be Raynaud's Syndrome? Can this be a result of dysautonomia?
He has a cardiology appointment this week. cardiologist...circulation problem????
This has happened before in his hands and fingers. They'll turn white and blotchy purple when he gets cold.
This is NOT normal.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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bettyg
Unregistered
posted
nancy, so sorry to read this about your son; bring it up to dr. this week.
nature, thx for giving her links/experience!!
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
No, this is not normal, hshbmom.
A friend had this happening in her hands, and eventually ended up with a diagnosis of Lupus.
This is definitely something to get checked out, and hopefully your son's cardiologist can start the ball rolling with that.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Nature Lover, thanks for the great links. The photos look just like my son's hands and feet.
Betty, I appreciate your concern.
Truthfinder, I read that information and will heed the warning.
I think Lyme could be one cause of endothelial damage...damage to the vascular sytem. They recognized viral causes for this phenomenon. Lyme was not mentioned. Lupus was mentioned s a cause...sometimes Lyme & lupus occur together, or Lyme is misdiagnosed as lupus.
"The Frenchman who first described Raynaud's attributed the color changes to exaggerated CNS response. The exact pathophysiology is still not understood, but several players, such as altered skin blood flow, platelet activation, locally secreted mediators of smooth muscle tone, and endothelial injury may be involved to various degrees depending on the form of Raynaud."
CNS stimulation, platelet activation, endothelial injury...sounds like dysautonomia associated with Lyme disease.
Is a cardiologist the right person to be seeing for this problem? Should I take son to his GP first? My insurance doesn't require a referral.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I HAD THAT*!)*!)!! I got Raynauds with LYme & Babs and my feet would turn DEAD WHITE (with a yellowish tinge actually) and it was CREEPY!!! Happened on & off for a year and then I began to have numbness which spread from my toes upward progressively- I could stick pins in and not feel anything- all the way up to my calves-
It is ALL gone and has been for years- 9 months of IV Rocephin and I have never had it again!!! My feet are normal now except for 3 toes which are damaged from frostbite as a kid.
Truthfinder, it is interesting you say that because at one point they kept wanting to diagnsoe me with lupus when I was 20 and kept testing my ANA (and I have met positive ANA lupus Lymies btw) which thank god stayed negative- and that suspected lupus went away when I was treated with abx for pneumonia!!!
But when I got tick bites, a rash and got REALLY bad, ALL my "lupus" symptoms came back at 28 and MORE!!! Including the white feet which I had not had at 20-!!!!!!!!!!!!!!!!!!!
And every single symptom of mine is gone now with abx therapy- so take heart, Mom!!! We also had another firm lupus Lymie in town who also got better with Babs tx and Rocpeihn- (I think Babs may play a huge part in lupus like symptoms!). She was a dental technician and a nice person very glad not to have lupus anymore!!!
ANyway, they look like dead feet, were more creepy than anything else for me. No pain with it for me. Just icy icy cold!!!!!!!!!!!!!!!
I am very glad mine are normal again and I hope with further treatment your sons will be, too!!
Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Sarah,
It's good to know you have recovered from this.
You are right...his feet looked deathly creepy.
I was really worried about his tissue dying from lack of circulation.
BTW, last night I read that you are more prone to Raynaud's if you had previous injury to the affected area, such as frostbite. Interesting.
Thank you for some good news!
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Exactly, Sarah. And I've tried to get my friend to look at the Lupus thing from a possible Lyme perspective....
Thanks for your post on this... it gives me incentive to mention this connection to my friend again.
WE have a lot of Lupus in this area.... and MS. I can't help but think there is a big connection here that no one is looking at.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Yup- but I also had it in my hands which I never had frostbite in*)!!!!!!!!!!! Yuck, glad it is gone*)!*)!*)!! Hope his goes too*)!*)*!)!
Tracy, I had a friend with Chronic Fatigue SYndrome and for 3 YEARS I bugged her about Lyme- finally to shut me up she got TESTED (and I was like, oh well, too bad!) and it was by the COUNTY of Santa CRuz (because she was poor) and she was CDC positive!!! She got treatment and is all off abx & herbals now*)!*)!! & is going back to school that she had to drop out of when she got sick!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! So don't feel bad about bugging her- this friend who found me so annoying now calls me "The person who saved my life!" (and before she would have called me, "My most annoying friend!")
Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
My son informed me that this has happened a few times before. It happened at his friend's house, when his feet got cold.
He sees the cardiologist tomorrow afternoon.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Truthfinder
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Member # 8512
posted
hshbmom, since you already have the cardiologist appointment, it sure wouldn't hurt to bring this up to him. I don't know about Raynoud's but the heart is often invovled with Lupus patients.
Thanks, Sarah - hey, I saw another post of yours about Lupus often being Babesia..... so, in this case, the Lupus turned out to be Lyme or Babs, or both?
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
The appointment today was futile.
The symptoms were trivialized...
"This is completely normal, anyone gets that when their feet are cold"
My son told the cardiologist he'd been having sharp stabbing chest pains the past couple of months: "Chest pains are just growing pains"
"You had a normal workup in the spring, so you are fine...your heart is fine...you are normal."
I mentioned my son's ID felt he had some signs of dysautonomia..."Well, that's why I don't like to put labels on people...makes you go looking for things that might be wrong."
What a waste of our time.
My son told him this happened a couple times before at his friends house when his feet were cold, and while wearing shoes & socks. He said this couldn't be Raynaud's because that happens when people get a little chilled. Anyway, he said there is no way to rule out Raynaud's and there is no treatment for it. He was wrong on both counts.
He didn't mention the lupus connection, nor the nail fold test he could have done in the office.
He also said his feet could be dead white for hours without causing tissue damage.
Why did I bother going?
I wonder if these symptoms would have been taken more seriously by a rheumatologist??? ...or if my husband had taken him to today's appointment???
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Truthfinder
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Oh, good grief, hshbmom, that is awful. Hard to believe these specialists actually have the nerve to charge money for this kind of advice and concern.
I really had hopes that perhaps you might get some decent information, or if nothing else, a referral to someone else to evaluate the situation.
Your concerns are NOT unfounded, contrary to what the cardiologist may have wanted you to think.
If you have a decent PCP that you trust, perhaps you should start there. I know that is what I would do, but I have a terrific GP family doc. He is often willing to run tests to rule out certain things (like Lupus), and/or he'll recommend someone else.
I don't know if a rheumatologist would be the best bet, or a neurologist? Perhaps someone can advise on that part.
I'm sorry this happened today, but don't despair. You will get to the bottom of this.
All the best,
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
My son saw the LLMD this month.
The physician diagnosed Raynauld's syndrome and said he has significant dysautonomia.
The physician was not surprised the cardiologist blew off these symptoms and the pounding heart, and the purple/white mottled hands when he gets cold.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
I'm sorry you're having these issues with your son.........I can't imagine any of my boys having to deal with all of this.
I'm curious what your LLMD had to say regarding treatment for the Raynaud's and pounding heart episodes.
Those sx have really been prevalant for me lately and it's creepy and scary at the same time. I'll get it in several toes and/or 2 or 3 fingers.
The heart thing is just random, but very unsettling. I've been through a lot of heart testing, with the general results a 40-something year old woman would get.
Any advice on these "white" toes/fingers and pounding heart issues would be wonderful.
Thanks and take good care of yourself and your son!
terri3boys
Posts: 268 | From Texas | Registered: Aug 2007
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Terri,
The LLMD is adding septra to minocycline and azithromycin...and flagyl now & then.
He didn't specifically address the pounding heart and Raynauld's...don't know why I didn't question him more. We were running very late and were very tired...couldn't think straight.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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This white foot thing was happening to me for the past few months. Mine has gotten 90% better.
I did several things, so not sure if any 1 of them did the trick or the combo of everything.
First, I added Natto, then allicin; as it seemed blood related. / Jets from the bathtub every epsom salt bath to the foot area./ 2 chiro appts - 1st helped alot - maybe 50% better in how often it was happening - but when it happened, it was severe, still. Dead white & numbing. But - it was at this appt that I looked at his chart of spine & discovered L-5 leads directly to feet. 1 week of lots of china gel on lower back. Lots of moist heat on back.
2nd chiro appt netted no results for lower back. Lower just wouldn't adjust - like it was too tight. The next week went & had a accup appt - saw much improvement in the next few days. Now at 75%. More china gel & husband's back rubs.
Now I started laying on the moist heat thing & rolling on it w/ legs partway bent, (like a sitting position) trying to loosen up lower back - OMG - I found a hot spot on both sides that caused a terrible ache - it was a very deep muscle or tissue, between hip and butt - 1 side was worse than the other. Made me throb right down the leg.
Added muscle relaxers twice a day for 2 or 3 days. Went for a 2nd accup appt, and has been at about 90% since then - 5 days ago. The funniest thing is - for the last few days I'm feeling a warming kind of tingle near the tail bone. It doesn't feel like a bad thing tho - it feels like a good thing - like energy has gotten to it or something. I go for another accup session Wed & will have her concentrate on the back & legs again. Then I think another week of babying it & I should be able to get the chiro to adjust it.
Just wanted to share what I have been experienceing, and how I feel I'm resolving it. I believe it is bone / nerve / blood - coag & circ...all combined that causes this in us. I feel that by dealing w/ all these things together - continuing TX - thinning blood, spine adjustment, accup, detox. I'll still reach for that last 10% - but compaired to every time I walked for more than a few mins or got cold, I'll take 90% improvement.
It also crossed my mind that some metals might be lurking there/ or got release thru TX & adding to the prob also.
Try masaging his legs & lower back w/ china gel or something similar. Add something to aid circulation, do a accup appt. Put him on a moist heat wrap for legs, lower back - see if he can find some "hot spots" of muscle throb - deep ones, that go down legs.
Hope this helps him regain color & comfort in his feet! It has worked for me.
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi GardenLymer,
Thanks for your advice. Here's a site with a few photos.
I can't find the photos that I first looked at; they included feet photos that looked just like my son's feet during his attack.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Just my experience..
White feet like described... spasms in the nerves/veins feeding the affected area shuts down flow to the area. Once feet or hands are warmed and spasms subside.. blood flow returns.
VERY disconcerning to see this happen.
Keep affected areas warm. That is the only way I can keep mine from turning white and dead looking. I also have the lacy-like rash all over my body and am affected by varying degrees of hypothermia at certain times because my temperature control knob is not working most of the time.
Like a lizzard. I need the external temperature to be high.. more near body temperature .. in order to not be hypothermic.
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