Junior Member

Posts: 17
From:
Registered: Aug 2003

posted 08-26-2003 12:35 AM            

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Hi im a 28 yr old male and im new to this site. In May of this year i started to feel sick with hot flashes and night sweats, Then in June I got sick with a sore throat that lasted for about 6 weeks, Went and got tested for Mono, strep throat, any kind of a virus that would cause some of my symptoms. They all were negative. Than I started getting sicker severe sore back Iv always had a sore back but not as bad as this. also my shoulders, my fingers, arms, legs, and exspecially my groin feels like i got dropped of a building and landed doing the splits. Not to mention dizziness, double vision, stomack pain, very tired alot,weakness, eye pressure, severe neck pain, shaking, tremors, restlessness, panic attacks feels like im gonna die, nausea, and the list goes on. I went to the hospital because i couldnt take the shaking anymore, they did a lumbar puncture to check for menangitis came up negative they also tested for lymes disease that was negative as well, so they say also checked for west nile that was negative. Then i had a mri on my head they found 4 small white spots on the mylain sheath, so they sent me to a neurologist to check for ms. I had a EMG, VER, and the both showed no signs of MS. I also had a MRI done on the spine with contrast that also showed no signs of MS. My neurologist put me on Inderall for the shakes and it helped, but i dont like taking medications so after three weeks I asked if we could try to stop the inderall to see if the shaking has gone away but with my luck it came right back, along with tremors as well. So now i went to a new doctor again to have him run some more test for Lymes, he was gonna do the western blot. Is there any other test they can do for Lymes? I hope somebody that reads this has a good answer for me because im really getting sick and tired of being sick and tired. Sorry so long but needed to get it out. Thanks for reading.

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Senior Member

Posts: 247
From:
Registered: Jan 2002

posted 08-26-2003 05:58 PM            

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kyleistheman, to me your symptoms sound very much like Lyme and other tickborne co-infections. Many people who have Lyme were first diagnosed with MS, Fibromyalgia, Chronic Fatigue, and ALS.

When Lyme is a possibility, it is very important to see a knowledgeable doctor. No Lyme test is completely reliable, and a knowledgeable doctor knows this. Besides getting tested for Lyme, you should be tested for all the co-infections that ticks can transmit--Babesiosis, Ehrlichiosis HME & HGE, and Bartonella. Many people who have Lyme are co-infected. Several of your symptoms sound like Babesiosis (night sweats, dizziness, weakness).

Where do you live?

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Junior Member

Posts: 17
From:
Registered: Aug 2003

posted 08-26-2003 07:37 PM            

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Ticker Thanks for your response, I live in st.paul Mn, And im very sick of this disease if thats what it is. I was on inderall for shaking and the tremors, but went off it to see if the shaking would stop and it came right back.So if this is a classic symptom let me know i got a whole list of other problems as well, Thanks.

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Member

Posts: 58
From:U.S.
Registered: Aug 2003

posted 08-26-2003 09:26 PM            

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Whoa, you've got a lot of symptoms here! Definitely make sure that your doctor keeps looking into Lyme. I don't want to insult you here, but have you been checked out for any STDs? If not, it is *very important* that you are examined, because late-stage syphilis can also cause these symptoms. I don't wanna scare you but it's important to figure this one out!

Good luck!

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Senior Member

Posts: 247
From:
Registered: Jan 2002

posted 08-26-2003 09:43 PM            

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kyleistheman, read the post "Lyme Disease Information" on this forum. There is a symptom list there. Your symptoms sound like Lyme to me.

Sometimes people who have Lyme test positive for syphilis.

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Junior Member

Posts: 17
From:
Registered: Aug 2003

posted 08-27-2003 12:40 AM            

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Its not syphilis, Im happily married, and so is my wife.We have been together for 10 years now and these symptoms just started.

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Member

Posts: 23
From:Tennessee
Registered: Jul 2003

posted 08-27-2003 05:20 AM            

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It's sounds like LD.
I have same symptoms.
It was hard getting diagnosed I have had every test there is.
MS was also mentioned but all my tests came back negative.
LD is known as the great imitator and no test is reliable.
There is a lab IgeneX that is better for testing but alot of people who have LD test negative.
You need to see a LLMD (Lyme Literate)MD,
You sound as if you have the co-infection Babesiosis and that needs to be treated first.
I also had it.
My LLMD did get rid of it with Clindamcyin and Quinnine but the LD is in all my joints and I'm on IV treatment.
Please find a LLMD ASAP...

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Junior Member

Posts: 17
From:
Registered: Aug 2003

posted 08-27-2003 10:16 PM            

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Harley thanks for replying, First of all I wish we could chat on the phone, Iv been sick for three months now and as im typing this i feel like i could keel over and die and thats no lye. Did you ever have a mri done? Did they test you for ms? and how long were you sick before they diognosed you?the only problem i got is that i have the lesions on my head, but thats it for ms so there is no official ruling that its ms. So i believe i have lymes disease with all the classic symptoms. Hit me up with an email Ks86magna@aol.com thanks.

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Junior Member

Posts: 17
From:Los Angeles/California
Registered: Jun 2003

posted 08-29-2003 01:02 AM            

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It seems so hard to be diagnosed these days unless you have cancer or diabetes. Once doctors rule those out, it's a long hard road from there. I don't think that the pain is easily understood by physicians and they often want to attribute everything to stress. Stress does make the symptoms worse...but I'm quite sure that you have already discovered that.
I've been tested for everything and have had a recent and normal CT scan; always have to check for Lymphoma when you have night sweats. I was tested for Lymes and for the co-infections, all negative. The worst part is that I was diagnosed in '89 with Lymes and was treated then, although not nearly enough. Now I have symptoms that I believe are Lymes related and I cannot seem to get proper diagnosis, or any for that matter.
I have now decided that I cannot stop looking for the answers because I cannot live with the pain. I have lots of anxiety and now I have to worry about dependency on pain medication just to get comfortable enough to sleep. So many of us are going the same thing that you are, just different doctors and different types of tests.
While reading all of the posts on this site, I've become envious of those who have a test that is positive. At least they know what they are up against and for what that is worth, that is a defining moment in recovering.
No matter what you have going on, please know that there is a growing population of people with the same kinds of disturbing and seemingly, unrelated symptoms. I hope that you can find out what is going on with your health and I hope that you can share that information with us.

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Junior Member

Posts: 17
From:
Registered: Aug 2003

posted 08-29-2003 11:58 PM            

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Ticker,
Thanks for the reply I finally after three months of feeling like I was gonna keel over and die any minute the doctors finally gave me a referal to a infectious disease Doctor. I just got my results back from my family doctor and they were negative again for lymes, Im getting really sick of this im in so much pain today You cant believe it. Every day its something else with me For no reason today my leg and my butt area hurt so bad it felt like i got kicked by a horse,my back,arms, neck,shoulders,and everything else is just killing me, if it wasnt for the oxycodone i would never make it through the day and thats the truth. Is there anything i should tell the doctor when i go to convince him even more to think its lymes? I hope i start feeling better soon im only 28 and recently married to a wonderful smart and beutiful girl and all i do is lay around and complain how bad i feel all the time, But thankfully shes been very undrstanding through this whole thing. Well my search isnt over for a diognoses yet.

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Junior Member

Posts: 17
From:Los Angeles/California
Registered: Jun 2003

posted 08-31-2003 08:57 PM            

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I know exactly what you are going through! I am 29 and getting married next week. My fiance is a wonderful man who has listened to me complain about my pain for over two years now. I survive primarily because he won't give up on helping me find proper treatment. In the meantime, I am trying to get through each day with the hope that the immunologist or rheumatologist that have come recommended will be able to figure it out.
I sweat so profusely at night that it wakes me up. My temp is never above 95 degrees when it's happening. The back, neck, knee, elbow, hip, and shoulder pain are really interfering as is the muscle weakness. I find it hard to go too long without ibuprofin and hydrocodone (you have to take the pain meds with the anti-inflamatory or it doesn't work as well). I'm worried about becoming dependent on them and that scares me more than the disease itself. However, I have to thank modern science for introducing medications that can at least make me more comfortable.
What you are describing is not unlike what I have been going through for years. Only now, I am not starting to feel better after a few weeks, like I usually do. I'd like to compare notes with you regarding your upcoming visit to the specialist. My appts are not carved in stone yet because my work schedule is very busy and the dr has me running all over LA, which is not a small town!
Post again when you are having a rough day because it seems to help make it a little easier to get through.

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Newbie

Posts: 1
From:maryland,U.S.A.
Registered: Sep 2003

posted 09-11-2003 12:28 PM            

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Hey Dude!!!
I found the answers to my very severe Lymes disease disfunctions with an INFECTIOUS DISEASE SPECIALIST!!! I was misdiagosed and treated with the wrong meds for a year and a half before i was properly treated with an IV antibiotic called ROCEPHIN....I was given another chance at life! I still have some mild problems but thats because I had it for so long. PUSH PUSH PUSH for answers! GOD BLESS!!

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