posted
Hi Everyone, And Thanks for all you've done to see me through since I came home from vacation with a nymph deer tick in each leg (5-29).
The jury is still out on whether these two were sterile-but I sent them on a little vacation of their own-to a lab!
Now I want to tell you why I have been IN SUCH abject terror of contracting a tick borne infection. Doctors have been bouncing me around for years without much help.
It's just that I've already been so weak/sick for so long with "no-one-knows-what" for certain.
I feel like I can't take on one more thing. I've been disabled since 11/06 with only a partial diagnosis.
I wonder because I realize that we *never felt them walk on us or bite into us*. EVERYONE thinks they will.
Can you take a moment and let me know if this odd laundry list sounds like Lyme or a Co-infection?
Why I want to be screened by a LLMD:
I am being treated for a spinal stenosis and degenerative disc disease/arthritis in my neck.
This was found on my MRI in late 2007, and worsened as of a later MRI with and without contrast in April 2009.
I have been experiencing daily all-over muscle and ligament pain and profound fatigue that finally rendered me unable to work as of November 2006.
This has progressed until I now just wish for more time out of bed.
As of yet there are some symptoms that may or may not be related to the stenosis, and some are particularly unlikely to be caused by the stenosis.
My new neurologist referred me to another rheumatologist and I saw him last week, but he just ordered another CBC and a Lyme antibody test (though I'd been on antibiotics for ten days by then). Here,s the list of symptoms:
1) One of these is a reduction in the blood flow to my right hand that causes my surface skin to die off and peel, and my nail beds to have taken on an odd shape and color-and the fingertips to go white after exposure to cold.
2) I have also been experiencing frequent and intense, sudden full-body sweats that from my scalp down, to the point where someone can look at my face and see drops of water all over my cheeks, and I have to rinse off and change all my clothing.
Last Friday it happened nine times, though most days it's fewer (2-6). They happen regardless of the temperature in the room I am in.
3) In addition to the muscle pain/weakness thought to be caused by the stenosis, I also have had dizziness, and severe problems with my mental focus and short term memory.
4) Oh, and I almost forgot to mention that I have developed a "slow spot" in my throat that causes food or pills to get stuck, but it's an intermittent problem. At times I've had to rush to the refrigerator for liquid yogurt when something would not wash down with water. I have an order for a "swallow study" to follow up on.
If it turns out that the recent tick experience has exposed me to something, I have a suspicion that it may not have been my first exposure.
I'm glad I'm only 47, because had I been any older, I'm concerned it would have been assumed that everything I'm experiencing is simply due to aging.
I've been bounced around from my GP to 4 neurologists, 5 rheumatologits, and every dermatologist at the UC Davis grand rounds, with no answers.
great job of detailed info above and fantastic SPACING!!
please edit subject as you have many areas you want to discuss; VAGUE subject do not get many readers; we need very SPECIFIC info if you want readers/replies.
we have to pick & chose since this board is so busy ok. thx for understanding.
posted
Some of those symptoms could be Lyme related. My grandmother has stenosis and she does not have that laundry list of symptoms you do, so it's not all the stenosis.
Plus, can't the stenosis itself be caused by infection or an autoimmune condition?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
It sounds to me like it could be Babesia related, especially the sweats and the spot in the throat. The dizziness also.
I have all of those and tested positive for all three test from Igenix for Babesia.
Posts: 114 | From New York | Registered: Jun 2009
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I also thought babesia when I saw the sweating.
I'm sure you've probably got more than one infection going on, as do most of us.
Some of your symptoms do sound rather Lyme-ish, but others possibly babs or something else.
And I understand your frustration on the CBCs.
Geez, how many times do we need a CBC, and why does everyone have to do their own?
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
I am diagnosed with Lyme and every co-infection.
The only thing I would say is I have experienced every one of the symptoms you listed to one degree or another; of course, with a laundry list of others as well. Just FYI. TS
Posts: 566 | From West Coast | Registered: May 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
If you have never done so, I suggest you look at the list of lyme disease symptoms in the Burrascano lyme disease treatment guidelines found here:
The more symptoms you have that are on this list, the more you can feel confident that you really should see a lyme disease specialist.
When you go to the lyme doc, take a list of all of your symptoms. A good doc can tell just from your symptom list the likelihood of you having lyme and what other coinfections he/she suspects.
I strongly suggest you spend the $600 to have Igenex lyme and co-infection testing done. It is well worth the money. They are the best tick-borne disease specialty lab in the country in my opinion. And, they are recommended by Burrascano.
It is terrible not having a diagnosis. It took 10 years of sickness before a doc tested me for lyme disease based on my strange, debilitating symptoms and came up with my diagnosis.
Now, it has been 4 years since I completed my lyme disease treatment and I am still symptom-free, enjoying my life--the same life I had before lyme disease.
The doc is the key to getting rid of this disease. I highly recommend you only go to a lyme doc who follows the Burrascano protocol. Ask when you call to make the appt. If the doc doesn't follow Burrascano, call another one.
And, ask the doc personally at the first appt if he follows Burrascano. Even if the doc says he does, compare his treatment of you to the Burrascano guidelines. If it doesn't line up, find another doc. I wasted 2 years with a doc who gave me less than aggressive lyme treatment.
Many docs say they follow Burrascano, but they really don't.
If you are willing to consider Maryland doctors, let me know and I can tell you who follows Burrascano.
I wish you a diagnosis quickly!
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Also, a Boston TV station did a great show on lyme disease a few months ago. Here is the link to it: http://www.kettmann.com/Lyme
When you get to the site, select the link to view the show. The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I've had all your symptoms except for peeling hands. I have Lyme, babesia, and erlichiosis.
3 yrs ago, I had decompression surgery for central spinal stenosis. i'm convinced this was caused by Lyme infecting the tendons and ligaments of my spine.
My sweating is like yours, but day sweats, no nite sweats. Profuse drenching sweats mostly on my head, triggered by humidity, anxiety.
I had a swallowing problem years ago that came and went.
Sounds like Lyme and/or coinfections to me.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
You all are SO helpful. Thank you so much for helping me!!!
I see that perhaps the "CBC & go home" seems to be the modern day version of "Take two aspirin and call me in the morning!"
I forgot 2 mention that I was in an accident that totaled a Volvo 25 years ago & started the ball rolling in the destruction of my neck.
Know what? I am so glad for that stenosis! At least I have one diagnosis that they can blame for my symptoms that they are willing to believe-only this is the patient placating/patronizing the doc!
In order of importance I've wished they'd be able to 1) help me. Or at least 2)name the illness, & even if they can't help me, or name the illness, that they'd at least 3) *Believe* me.
My MRI gives them what they need.
Isn't it suspicious that not a single doc ever even asked one Question about Lyme Sx or poss. exposure?
These issues were on and off since 2000 and in high gear from 2004.
Wow! Raynauds too? In 1 hand or both? my L-hand is fine-or close to fine.
So far-no night sweats either. Thank God. Enough probs by day.
Typing right now is either tedious w/one hand or painful as heck w/o skin on r-hand fingers. they were just bloody raw by this afternoon.
Lucky I stole a small vinyl glove from Dr. Useless! I put neosporin in the fingertips & am wearing it 2 bed.
I guess he did do ONE thing for me! You all are such wonderful people. I sent my ticks to clongen labs. Ever used them? You all are awesome & then some!
posted
Funny, I had Reynaud's years ago. Pretty severe. But it mostly stopped when I stopped a tricyclic antidepressant I was taking. I had always assumed that the meds were causing t. Now I believe it was Lyme, and the meds just facilitated the expression of the symptom, sort of like causing a "tipping point" to be reached.
The Reynaud's was on both hands. Although it mostly went away after stopping the meds, I still had occasional mild episodes.
I also for years had painful bouts of exzema on my hands, with skin peeling. I had forgotten about that. Maybe that was Lyme-related too. I haven't had this since being on abx the past year.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
I NEVER had Raynaud's until all my other LD and company symptoms hit, not ever. Then boom, all these crazy neuro symptoms are going on and the Raynaud's started in as well. I have it more in my left hand, but mildly in my right as well. I have no doubt it is caused by the infections.
I think it's not uncommon for Lyme and company to exhibit vascular symptoms as well, from what I've read. Also there is the not uncommon "thick blood" issue too. My LLMD says she sees Raynaud's frequently in LD patients, though obviously, you don't have to have LD to exhibit it.
I also had cervical fusion surgery due to a massive disc herniation (IMO caused by LD), all prior to Lyme diagnosis. 5 months after the herniation all H#!*# broke loose neurologically for me. Surprise, the surgery did not "fix" my problems. One year after surgery I finally got figured out as to the cause of my never-ending ills. Good luck LymeLearned. TS
Posts: 566 | From West Coast | Registered: May 2008
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