I haven't posted for awhile-but, I have been on abx. for 2 years now including 6 weeks IV Rocephin. I have always had a horrible headache and my hands and arms would "tingle" while in bed. There has been an abrubt change-they now tingle then go completely numb-at night and during the day! Every 5 or 6 days I will have severe shooting pains in them, sometimes both at the same time. I also feel like I have "bugs" in my ears. Can someone help me?
Thanks-hatterasbit {I cringe everytime I see an OBX sticker}
unfortunately the neuropathy seen in lyme is asymetric and at a low frequency rate in the neuron fibers.
because of this waves are often not found on many tests used by neurologists, including an EMG.
but it doesn't hurt to get a professional opinion.
drugs like neurontin or tegratol MIGHT help.
immunomodulating drugs can help if you are given a diagnosis of CIDP by a neurologist -
http://www.annals.org/cgi/content/full/126/9/721?ck=nck
[This message has been edited by zipzip (edited 04 January 2005).]
I have had tingling in my arms and hands on and off for years, and they do go completely numb. Epscecially at night in bed. I never thought it had anything to do with Lyme, before I was diagnosed.
From what I was told it is just a symptom of lyme. There are so many odd symptoms to this disease, I never put all of mine together, until now. You still may want to check with your LLMD.
I have some symptoms with my ears, but its mainly with hearing, and ringing.
Good luck,
Lisi
Just like with CFS, FMS and a few others, TOS is a syndrome which can be caused by an illness like Lyme.
You need a chiropractor, osteopath, or physical therapist who is knowledgeable about Thoracic Outlet Syndrome, and does NOT believe it is all in your head.
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Sonoma County Lyme Support
[email protected]
The media needs to warn people about ticks, but just won't do it. All in the name of tourism, and the $$$ it brings. What a shame for all those out there misdiagnosed with many other illnesses and are not getting proper treatment.
By the way, I was one of those chronic Lymies until recently. Then I started ketek to kill abx-resistant Lyme, and abx for babs and bart. Can't tell if I'm cured yet, but after four years of waiting around for something to change, it's changing faster than I can keep up with.
I've ahd it on and off for years. It started again last month and has been constant evrynight since!
It is very painful. When I wake up my hands feel broken and until I take my pain med. they hurt!!
through out the day I get the shootin pains, and if I'm on the phone to long they go numb.
I have to to find a solution, it's just another symptom of this disease.
I'm currently on IV doxy 400mgs a day and a mag. w/ vut b's in it.
Plus I give myself a B12 shot every other day.
I hope you staert to feel better soon as do I,
guiney
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I am not a doctor.
Just giving a suggestion here.
STOP abx.
Start on ENZYMES & Vitamins.
Get lot's of sleep & hot daily baths.
EMAIL me for more information on the enzymes I took to help.
Not that it will cure you but......
Maybe it will help.
My hands and then arms later.... use to go ASLEEP all the time. I got to where I could not drive a car........
The bacteria does effect your nerve endings.
Love, Kat
After I start some programs with AKG Naturals my pain is now 90% gone. Now it is cold weather I do have some discomfort like cold hands and feet, but not severe pain like before. I'm sure this will help your pain as well. I have a whole list of programs which have helped me tremendously so if you are interested just email me.
You can email them at www.akgnaturals.com and they are very wonderful.
I had banging pains in my hands from using them hard all day at work. I have been wearing wrist braces 24/7 for years and years. helps support them, keep them from banging and throbbing. When they do, tighten up the straps another notch. They mostly keep my hands from rolling under which makes the bones crunch one over the other pretty bad because I have zero cartilage by x-ray, in my hands and that was 6-8 years ago and they are alot worse today.
In the last year or so I found it very hard to write a check. Every time the pen changed direction the bones snap over one another and do you know how many times the pen point changes direction in just one check??? That is the definition of torture.
So you might try getting those wrist braces and see if your night time pain is helped!! Just trying to help cuz I am --just don--
I had many of your symptoms, although not as intense, prior to abx. I concur on the physical therapy suggestion. For me, the muscles around the thoracic outlet were so tight, I could only find relief with a muscle relaxer. I'm on Flexeril, and that helped me do pt.
I'd suggest being very careful wearing wrist braces. I was misdiagnosed with a repetitive stress injury prior to the Lyme dx. I wore wrist braces for a year and it made them much worse. My shoulders, back and neck were tighter from overcompensation. My hands and wrists were so weakened that I couldn't eat with utensils.
-Aniek
OBX stands for the Outer Banks area on the coast of NC. [Cape Hatteras, etc.] It seems everyone that has ever been there has a OBX sticker on their car.
I will look into PT. Everytime I tell my LLMD about a new sympton, he wants me to take another expensive suuplement.
Hi Hatterasbit,
Low thyroid function can cause numbness of the hands and headaches. It happened to my husband.
I don't know if low thyroid is the root cause of your problem.
Your thyroid test can appear perfectly NORMAL, but in reality your body is not absorbing thyroid hormone properly.
My husband has awakened in the middle of the night to find that his hands have gone numb or fallen asleep. It's kind of scary.
He's also prone to headaches. He's had LD for a long time according to the Igenex WB.
If you have low body temperature, You still may need RX Armour Thyroid (T3 & T4) or whatever your "thyroid friendly" doctor prescribes.
I don't understand the science behind it, but it works if you need it.
The late Broda Barnes, MD devoted his entire life to treating patients with low thyroid.
He linked low body temperature to low thyroid function.
This is discussed extensively in his book, Hypothyroidism: The Unsuspected Illness.
The Broda Barnes, MD Foundation still exists today to get the word out.
If you have low body temperature when you awaken in the morning and it's below 97.8, even by a fraction of a degree, you most likely have low thyroid function.
Here's the Broda Barnes Basal Body Temperature test for anyone interested:
Place thermometer at bedside. When you wake up in the morning, place the thermometer under the arm for 10 minutes if it's an old mercury kind. Do this for 2 days in a row.
Do not talk, move, or get out of bed before finishing the temp.
If your temp is below 97.8, you probably have low thyroid even in the face of a "normal" thyroid test.
Here's the catch:
The thyroid tests will always have to be run & you will probably have to find a "special" thyroid friendly doctor to prescribe the natural form of RX Armour Thyroid.
This Armour Thyroid will cost like $10 a month------very cheap. Thyroid revs the metabolism to get the toxins out & the oxygen in the cells. It builds immunity so you can fight infections.
It impacts every organ function.
As I said, your blood test may be normal, but your low body temp is the clue that you do need RX thyroid hormone.
Some thyroid Docs like you to bring in 5 days in a row of morning temps----depends on the DOC.
This test was first published in the Physicians Desk Reference & was later removed when the new synthetic thyroid meds hit the market. Hmmmm.
That's too bad because this caused
Dr. Barnes' method to lose credability. And, he helped thousands of patients in his lifetime.
He worked with patients directly and found redheads seem to be very likely to have low body temperature or low thyroid.
It you have insurance, request that your PCP run a test for thyroid function. Get a copy of the results & take to a "thyroid friendly" physician.
You must review your test results.
As of 2002, the new TSH levels have been lowered from 10 down to 3 which is a huge change.
Not all labs have conformed to this standard. So double check your results.
Physicians who are members of the American Academy for Advancement of Medicine or ACAM will usually prescribe thyroid.
Go to: www.acam.org & find a doctor by zip code or state.
Or, go to: www.thyroid-info.com to find a thyroid physician in your state. Patients even rate the doctors here. This is a great site.
Traditional doctors will not treat hypothyroidism with a "normal" thyroid blood test. (Forget about it.)
Your thyroid test would haved to bottom out before they'd even think of treating you----you'd be pretty sick by then.
Here are some low thyroid symptoms taken from the book by Dr. Stephen Langer, Solved The Riddle of Weight Loss.
Remember, you don't have to have every symptom to have hypothyroidism. Symptoms vary in patients just like LD.
Fatigue
Feeling cold, particularly the hands & feet
Weight gain or inability to lose weight,
despite constant attempts at dieting
Lethargy
Dry, Coarse skin
Swelling eyelids
Coarse hair
Pale skin
Enlarged heart
Faulty memory
Constipation
Hair Loss
Labored, difficult breathing
Swelling feet
Hoarseness
Nervousness
Depression
Menstrual problems in females
Low libido
Impotence
Heart palpitation
Emotional instability
Brittle nails
muscle weakness, pain
Pain in joints
Poor concentration & memory
Anemia
Atherosclerosis
High cholesterol levels
Headache is a huge under the radar symptom.
These are only a few of the symptoms.
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Here is Lymenet's Bambiland's in-depth information about thyroid:
http://flash.lymenet.org/ubb/Forum1/HTML/027781.html
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Here is Daystar1952's in-depth info re; thyroid:
http://flash.lymenet.org/ubb/Forum1/HTML/029876.html
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If you're still reading....,
Here is a symptom chart handed out at our Support Group Meeting. It shows how LD affects every body organ.
It's in pdf file form so it's easiest to print out & have on hand for easy reference.
Here's the link below:
You'll need to scroll down the page to the green indicator next to SYMPTOMS & click.
http://www.lymeinfo.net/lymefiles.html
You also may need to have adrenal function studies done. It all ties in together.
My former LLMD said that the Lyme bacteria drives body temperature down. They don't like warm bodies.
Hope this may help.
Take Care,
Jan
[This message has been edited by Recipegirl05 (edited 05 January 2005).]
Ofcourse those symptoms could be lyme-except the temp. thing.... but I'm going to talk to her about it!
Thanx, Jamie
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Hope you're having a great week & are continuing to improve.
When you go to the doctor, ask for;
TSH, Free T3, and Free T4.
Yep, thyroid is one of my favorite topics. How could it not be. It's helped my family so much.
My son has a much easier time getting out of bed in the morning when he's on it. He can tell a distinct difference & his asthma doesn't seem to flare.
If you get a RX for thyroid, it takes about 10 days, I believe, to really kick in.
HOpe you have a good doctor's visit. So good to talk to you.
Take Care,
Jan
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If you're interested-----here's the explanation according to Bambiland's post:
"Also, just having the TSH test, does not give the whole picture. One should have Free T3 and Free T4 tests done.
As you made mention of in your post, one needs to know how much of the thyroid hormone is useable by the body - this is the Free T's. Also thyroid hormone must be converted from T4 to T3 to be able to be used at the cellular level.
If there is a conversion problem, then the body is not geting what it needs. One needs to know how much of the FREE (useable thyroid hormone) there is available for the body to use and then if enough is being converted to T3.
None of this can be told by only a TSH test. Many docs will only 'screen' for thyroid problems using TSH and then they may run more tests if they feel that is showing a problem, but again, they may not.
AND these problems of having enough FREE Ts and a proper conversion process is not going to be evident from a TSH. TSH could look fine."
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Thanks!
Check my post:
http://flash.lymenet.org/ubb/Forum1/HTML/030527.html
Maybe this is the problem? I wrote this post with you in mind. It may be worth giving the supplements I suggest a try because they may help you.
Take care,
Angie