posted
Hello, firsttime poster here. I ran across your website as I have been having some strange symptoms as follows:
About late June I noticed a lump on my inner thigh which I thought may be the start of a boil (never had one in my life). Then it turned red with a white center. I went to the Dr. and he said he thought it looked like a bug bite. He said if I started feeling fatigued, he would test me for Lyme's Disease. The bug bite resolved itself and I went about my normal life. Then about 1 month ago for no apparent reason, my neck started hurting so I went to chiro. Two sessions there and it didn't get better so I went to my orthopaedist who injected my back with cortisone thinking it was some kind of tendonitis type of injury. I could feel the muscles all balled up and spasmed. No amount of hard massage by my wife would release the spasm. Being a cancer survivor, I asked for a cervical MRI. That came back with some herniation on C5-C6, which I've pretty much had for a long time. I also had my oncologist do a brain MRI. The brain MRI was negative for metastatic disease. Essentially, completely normal. Still have creaky neck pain when I turn neck to the left. Also, have numbness and tingling in left arm, especially radiating down to my fingers. Nothing seems to bring it on. It just comes on a odd moments. Also, about the same time the neck and back pain started, I started having night sweats, sweating only on a small area on the back of my head about the size of a baseball, but enough to drench my pillows several times a night. Also, the sweats have started coming on during the day at really odd times when I've not been overly active physically. I've noticed for a few months I've had real difficulty swallowing so much that I have to cut steak in real tiny bites to avoid literally choking to death. A while back I had the Dr. look at my throat and see if it was narrowing and he said he couldn't see anything abnormal. Tonight, I simply couldn't eat my wife's great roast chicken because I couldn't get it down. Also, lately I lay awake for awhile before I'm able to fall asleep. I've never had that problem before and in the past I would be asleep literally within 2 minutes or less after I laid my head down on the pillow. I've had a persistent congestion ever since my wife and I got rid of our colds about a month or so ago. And I kind of feel a little labored breathing, but I don't want to confuse that with my bicuspid aortic valve condition that can cause the same thing. I got tested today for Lyme's after I called the Dr. and told him I think I should be tested. Do my symptoms sound to coincidental that it could be Lyme's Disease? Sorry for the long introductory post and thanks for reading!
PS: Also, I've been up urinating about 4 times per night and I've experienced no benign prostatic hypertrophy so I'm ok in that dept.
Posts: 2 | From midwest, usa | Registered: Sep 2007
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posted
Glad you are getting tested. However, not all local tests are accurate. (I have had 7 negative local tests)
You might consider sending a blood test to Igenex in CA. website: www.Igenex.com
I also have neck pain, creaking in my neck.
I have spasms where I can't swallow food and have to spit it out.
Hot flashes, everything you have stated.
Know that you don't have to have all the symptoms to have Lyme Disease. I hope you don't though, it's a nasty disease.
If you do, find a Lyme Literate Doctor (LLMD). Check out www.ilads.org. They have listings.
Good Luck!
Posts: 111 | From York, PA | Registered: Jul 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Welcome to the board. It definitely sounds like you have been through a lot, but you also seem to know how to deal with the medical system is good. You definitely seem very well educated about your health.
Your symptoms definitely sound like they could be from Lyme. Some of them could also be from babesia. Babesia is a parasite that is carried by ticks, and other insects. We refer to coinfections, which are infections, like babesia, that you might get at the same time you become infected with Lyme. The night sweats really sound like babesia.
If you post in the seeking doctors section, somebody can recommend a doctor in your area. Lyme is not well understood, and it is often undertreated. You want to work with a doctor who really understands Lyme and other tick borne diseases. The term LLMD is used to describe those doctors.
Just a little housekeeping. Many people on this board have cognitive impairments from Lyme. So we ask posters to limit paragraphs to only a few lines. It's easier to read that way.
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Cobweb
Unregistered
posted
quote:Originally posted by photogman: Hello, firsttime poster here...
... and thanks for reading!
Yeah, like Aniek said-with a long post like that I usually go from the first phrase to the last in the blink of an eye. But you're welcome anyway.
Take Care, Carol
I didn't even read all of Aniek's post-just the last sentence. You're proablably in the right place-keep coming back.
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posted
Yeah, and how was I supposed to know? I assumed this place was a friendly place. Not much to encourage first time posters to stick around with treatment like this. Take me to a sticky that would have given me some advanced warnings that some of you are cognitively challenged. I'm sorry but if I don't know, how am I to presume?
Posts: 2 | From midwest, usa | Registered: Sep 2007
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Photo--
Did you take a picture of the Bite? Post it if you can--
Night sweats is a symptom of Babs - Check you body temp --
Low temp is a symptom of Babs also Babs-
One tick bite can give you Several different infections from One Bite (Co-Infection)
Dont put much faith in your test results- The Test are Very Inaccurate -
Make sure to read the NewBee Links that someone will post --
It is Good that you posted your Symptoms list --
You need to give more details tho and cut out extria stuff
Like Bite in June and started feeling sick about mid July-
First symptoms - Night Sweats -Shortness of Breath- Num - Tingles - Neck pain --
Some symptoms Come and Go -
Give Clear Details - Short -
After reading your post several times your symptoms sound like you came to the Right Place -
Hope this Helps-- Jay --
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by photogman:
Hello, firsttime poster here. I ran across your website as I have been having some strange symptoms as follows:
About late June I noticed a lump on my inner thigh which I thought may be the start of a boil (never had one in my life).
Then it turned red with a white center. I went to the Dr. and he said he thought it looked like a bug bite.
He said if I started feeling fatigued, he would test me for Lyme's Disease. The bug bite resolved itself and I went about my normal life.
Then about 1 month ago for no apparent reason, my neck started hurting so I went to chiro.
Two sessions there and it didn't get better so I went to my orthopaedist who injected my back with cortisone thinking it was some kind of tendonitis type of injury.
I could feel the muscles all balled up and spasmed. No amount of hard massage by my wife would release the spasm.
Being a cancer survivor, I asked for a cervical MRI. That came back with some herniation on C5-C6, which I've pretty much had for a long time.
I also had my oncologist do a brain MRI. The brain MRI was negative for metastatic disease. Essentially, completely normal.
Still have creaky neck pain when I turn neck to the left. Also, have numbness and tingling in left arm, especially radiating down to my fingers. Nothing seems to bring it on. It just comes on a odd moments.
Also, about the same time the neck and back pain started, I started having night sweats, sweating only on a small area on the back of my head about the size of a baseball, but enough to drench my pillows several times a night.
Also, the sweats have started coming on during the day at really odd times when I've not been overly active physically.
I've noticed for a few months I've had real difficulty swallowing so much that I have to cut steak in real tiny bites to avoid literally choking to death.
A while back I had the Dr. look at my throat and see if it was narrowing and he said he couldn't see anything abnormal.
Tonight, I simply couldn't eat my wife's great roast chicken because I couldn't get it down.
Also, lately I lay awake for awhile before I'm able to fall asleep. I've never had that problem before and in the past I would be asleep literally within 2 minutes or less after I laid my head down on the pillow.
I've had a persistent congestion ever since my wife and I got rid of our colds about a month or so ago.
And I kind of feel a little labored breathing, but I don't want to confuse that with my bicuspid aortic valve condition that can cause the same thing.
I got tested today for Lyme's after I called the Dr. and told him I think I should be tested.
Do my symptoms sound to coincidental that it could be Lyme's Disease? Sorry for the long introductory post and thanks for reading!
PS: Also, I've been up urinating about 4 times per night and I've experienced no benign prostatic hypertrophy so I'm ok in that dept.
Hey, we're friendly. I reformatted the post so others could read it.
Carol
[ 25. September 2007, 02:39 PM: Message edited by: Carol in PA ]
Posts: 6949 | From Lancaster, PA | Registered: Feb 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
As a Lyme support group leader for 8 years I would have to say that your symptoms sound like they COULD be from a TBD - and if not LYme BABESIOSIS which can also be seronegative- the choking is not good- I had that-
If I were you, because the choking falls into the differential for ALS, Lou Gehrigs Disease, I would go after why that is happeniing- demand your doc give you an answer, don't wait on it-
and know that ALS can be triggered by TBDs-
99.9% of peopple that would come here with one or two symptoms that COULD be Lyme or TBDs I would
NEVER
tell them to get treatment for sure (I would tell them, go to Lyme doc, could be Lyme! could not be!) EXCEPT because the choking can be associated with the worst outcome diagnosis (ALS) I will tell you that if you were my friend I would make sure you were treated for Lyme & Babesiosis if they don't come up with an answer for that choking- because choking is not something you want to mess with-
but I would work with your doctor and find out if there is some other cause
and if not
I would get treated for Lyme, Babs & Ehrlichiosis which can all be blood negative.
If you had any OTHER symptoms I would never ever say this. But choking is serious and I think of it in a different class.
I hope it is somethign completely innocuous and they find out what it is-
but the peripheral neuropathies and night sweats sound like Babs-
you can self-treat with the herb Artemisia for babesiosis if your doc won't have a go at it.
Depending on where you are geographically there are different strains of babs-
Don't mean to be mean bringing up ALS but I am sure you have thought of it in the dead of night-or would soon if you poke around symptom lists on the internet- there are 2 kinds of onset- limb onset with limb weakness- and bulbar onset which can begin with choking-
We have had 4 ALS Lymies locally and 3 are alive, one was only treated for Babesiosis with orals. All of the rest were treated for Babesiosis with Lyme.
I am NOT an ALS Lymie but I did have some ALS symptoms including bulbar symptoms- choking- and for ME it was Lyme & Babesiosis as well wihch did it-
WELCOME*)!*)! !*)!**!))!
(don't hate me*)! I think knowledge is best armed to get better, I mean well, don't mean to depress you!!!)))
Sincerely,
-------------------- 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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Cobweb
Unregistered
posted
quote:Originally posted by photogman: Yeah, and how was I supposed to know? I assumed this place was a friendly place. Not much to encourage first time posters to stick around with treatment like this. Take me to a sticky that would have given me some advanced warnings that some of you are cognitively challenged. I'm sorry but if I don't know, how am I to presume?
Photogman- And knowing that you didn't know-Aniek was just letting you know what you didn't know, so now you know. No need to apologize.
It wasn't a warning-it was just meant to be informing.
I did the same thing with my first post. And like you, felt as if I was being chastised because I did something wrong.I am still in counseling for Post Traumatic Stress Syndrome.
This is a friendly place-sticky around and you'll find out.
Seriously man- My brain is a bit askew with this lyme disease which causes me to break out in uncontrollable laughter-and inappropriate humor sometimes.
Welcome aboard-hang in there- you have a lot to learn-and so do I.
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Carol, thank you for breaking it up.
Photog, we're friendly ... how would you know if someone didn't tell you?
Stick around, you will learn a lot.
I would definately get tested for Lyme and Babesia. I would post on seeking doctors to find a Lyme Literate physician (LLMD) near you.
Most other doctors too readily dismiss Lyme Disease and won't treat it until it's gone.
Many of us have gone undiagnosed for years because of this ... even in the face of a positive Lyme test and most of the symptoms, my doctor still told me I had Somatization Disorder ... you might ask why she did the test ... because I made her.
I even called IGeneX and had them send the test kit to my house, then I took it to my doctor to administer. IGeneX is who you want to be tested by.
Keep reading here, you will learn a lot.
And, a warm welcome from a Lymie with cognitive issues.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I would find an LLMD as soon as possible. Your symptoms are a lot like mine were. It was Lyme - I am much better with treatment:
my neck started hurting so I went to chiro. - this is the first symptom I had - I also went to chiropractor. Didn't help.
Also, have numbness and tingling in left arm, especially radiating down to my fingers.
This was my second symptom - along with muscle weakness and muscle twitching
I've noticed for a few months I've had real difficulty swallowing
Well me too. I thought for sure I had ALS. Mine was either just another lyme symptom or my thyroid - which lyme had whacked out. Either way, doesn't matter - 6 months of abx made it go away. I don't mean to sound flippant - it was a hellish 6 months...but I am much better!
Go see a good Lyme doc! Good luck! Julie
Posts: 351 | From La Crosse, WI | Registered: Sep 2005
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posted
Welcome! If you're in the Midwest, you have one of the best LLMD's in the country near you!
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
The following signs/symptoms may be present in those infected with Babesiosis: Fatigue Arthralgias Myalgia Drenching sweats Headaches Emotional lability Depression Dark urine Splenomegaly Dizziness Nausea and vomiting Cough Dyspnea Fever Chills Hepatosplenomegaly Jaundice Malaise Shortness of breath Bleeding tendencies, bruising Thrombocytopenia Hemoglobinuria Hyperesthesia Pulmonary edema Encephalopathy Low to normal range leukocyte counts Possible elevated levels of dehydrogenase, bilirubin, transaminase* Anorexia Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection. An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs. =============
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
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