posted
I stumbled upon this site a few days ago and have read most of the posts. A little history on me..I am a 37 year old, male from Maine. I am ex military *Air Force) and love to be outdoors. I never have camped and not one for being in the woods but, I do love to get to the ocean during the summers to lay out. In 1999, the right side of my face drooped and I started slurring and having massive confusion. I was brought to the emergency room where they ran the CT witha nd without a contrast to come to the conclusion of no stroke. They also wanted to do a Lyme Tyter as well, They sent the test out to the Mayo clinic. Two weeks went by and I was not notified by the hospital the results were back, I went into the hospital to get the tests and no one there would explain them to me. I later called the hospital and tehy had the Physician Assisstant call me back. He said that he reviewed the test and then asked me how I was then feeling. I said that I was starting to get better as I now had my speech back. The Bells Palsey caused me so much mental confusion, I also could not speak. So..anyway...I told the PA that I did have a fever blister but that was all. His response to me was, "well, seeing how all you have now is a fever blister it was probably just a viral infection". That did not really give me too much confidence.
Fast forward over the years..I started getting my medical care thru my Veterans Hospital, which BTW, has been the best care I ever received. Too many complain that the VA gives bad service, mine has been great. About a year and a half ago I started a series of visits and tests. My cholesterol was over 600 and triglycerides over 1100. They did ekg's, ecg;s, chest x-rays..etc. They noticed that I had an enlarged heart as well. I am on an inhaler for times that I have difficulty breathing. They started me in therapy as well for depression..was on prozac then zoloft and then I requested they take me off them as they were making me a different person. I had absolutly no energy and felt MORE depressed. I am on Tricor which is Fenofibrate for my Cholesterol. My symptoms over the last year include severe exhaustion. It is not uncommon for me to stay in bed for days at a time. Over the last year or so I have had severe headaches, stiff back of the neck, daily diareah, very painful joints, left side numb, left arm and left leg a painful numb..seems to come from the knee and the inside elbow. I feel it thru to teh bone. I have difficulty getting out of bed (i am 5'10 and 190 lbs)...I have to push myself up..if I am on the floor, bending down is very hard and gettiong back up I have to push myself up with my left arm and that hurts as well. Tonight as I write this, my left side is painfully numb and some of that numbness is coming from within the left side of the pelvis/groin. I have noticed over the last month some dyslexia. Instead of typing the word "the" I tend to type "teh" on a consistant basis.
I have been bumping into walls as I pass thru the doorway, thinking that I have gone thru it further than I really have, I have now fallen 4 times..2 on the ice outside, no damage to my head or anything, and once I slid down the inside stairs (13) starting at the top and the outside stairs (9) starting at the top. I have had the symptons prior to the falls. I joke that the neighbors probably think that I am a drunken lush, but...I do not drink, smoke and never done a drug. A good clean cut ex military guy! I tend to lose my balance, I am forgetful over small items to the point that i now have to write everything down. I can go to the grocery store and forget what I am there for. Tonight, I was drinking a glass of water and I like cold cereal to snack on with no milk and as I was getting water from the kitchen to put in my glass, I accidentally poured it into my cereal! I have a very hard time getting out of bed, hard time motivated to shower, clean the house..get dressed and leave the house..etc. I have noticed that a few times my hands have been shacky..also a slight twitch in my left cheek, tho when I look in the mirror..no twitch. I am going to see my Primary Care on Friday to discuss these issues and hopefully he will run bloodwork. He has always been a progressive Dr so, i hope that he will help me to find out what is wrong with me. I have on several occasions had severe panic attacks. Been to the ER 4 times in the last 5 months with panic attacks. At one point he did ask if I was tested for Lyme, and I responded that I was back in 99 and that it came back neg. My theory is that the hospital that ran it had NO clue what they were doing and just sitting here and reading the tests, it does not sound convincing of ANYTHING.
Under one column it states "TESTS"...they list "Lyme Disease", "B. BURGDORFERI ANT", "LYME IGG WESTERN", "LYME BAND DETECTED", "LYME IGM IFA". The next column has a header that reads "EXPECTED RANGE". The only test that has something beside it is the "LYME DISEASE". Next header states, "UNITS". The only one that has anything besides the "TESTS" is for "LYME BAND DETECTED" and it states, "ADA"..whatever that means. Lastly, the last column says, "RESULTS". On all of them it states "SEP REP A". Whatever the hell that means. Under these tests is a page break....it says "Lyme Disease"...then theres about 50 spaces and it states, "SPECIMAN SENT TO REFERANCE LAB".
So, looking at this, it means nothing to me. No numbers...no bands..NADA. Maybe this is why my primary wants to see just what the hell these people did when they "tested" me.
What do you all think? The reason that I bring this up is I met with a new business contact on Sunday at he and his wives house. She was misdiagnosed for years. She has Lyme and a great Dr that helps her. While her and i talked for 4 hours about what I had been thru, she kept saying over and over, "You've got Lyme". She gave me a book to read and educate myself, "Coping with Lymes Disease" and I have read it and found it very informative. Based on what I have told you..and your experiences...,y symptoms..and that VAGUE Lyme test my local hospital did, do you think that I have had Lyme all these years and been undiagnosed and just been living with these issues?
Any help and input is GREATLY appreciated!!!
-------------------- brian Posts: 9 | From Maine | Registered: Jan 2008
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I recognize myself in SOOOO many of your symptoms...
I was diagnosed on Monday by an amazing LLMD in NY State. I'm sure there are great LLMD in Maine. Find one and bring along your "vague" test results. If you can't find a specialist, PM me and I will help you find one.
Take care and hang in there, you're going to get help soon!
Julie
Posts: 209 | From Montreal, QC, CAN | Registered: Jan 2008
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posted
I am hoping that my Dr is open to the idea of Lyme. That seems to sound kind of crazy...but, atleast it would be faster treatment. My fear is that if he does do the tests and they come back negative, he will dismiss it like alot of the stories I have read. I am just so tired of wasting days and weeks away. I am noticing now that I get a sharp pain in my fingers. Kind of like when your outside and your fingers are exposed to the cold...a sharp shooting pain. It comes and goes very fast...right hand only..in the tips of the fingers.
Last night my leg numbness pain was over in my right leg as well while in bed. Today is a prime example of how I want to just stay in bed. I have ajob interview at 130 so I have to get up but otherwise, I would not. It looks like a sunny gorgeous day out, but I could just sleep all day! I do fear that my Dr would say it's all in my head. I do think that he is progressive enough not to tho. Yesterday I wrote up 6 pages of my symptoms and what I have been experiencing. I brought that along with the test results from 1999 to the Dr'S office so that he would have that for review prior to our appointment on Friday.
-------------------- brian Posts: 9 | From Maine | Registered: Jan 2008
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Dear Brian,
WELCOME*)!*)!*! You very well could have Lyme disease!!! In my experience of being a Lyme support group leader for 8 years you have to learn to be your own best advocate when it comes to this disease! Even well-intentioned doctors are often misinformed and under-educated.
I know you are pro-the VA but the military does not have a great record when dealing with Lyme. Not to be depressing but illustrative of what could happen if you place all your trust in military services, this is what they let happen to someone they KNEW had Lyme and that they diagnosed as Lyme- the references to his medical care in this very sad article about his last days- in short, they gave him symptom relief ONLY, no ongoing care for the actual infection. They gave him pain meds and let him decline into a wheelchair!!! http://www.angelfire.com/planet/lymedisease/Lyme/Ring.html
YES!! Isn't thta word thign weird with the reversing letters!!! I never ever did that before Lyme and when I got Lymed I began to- it is weird!!!!!!!!!!!!!!!!! Many of us do!!! 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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posted
Brian, I would hope for the best with your doctor, but don't count on it .... make that appt. with the LLMD, see your doctor in the meantime.
Besides, if you had another serious disease, say cancer, you wouldn't rely on your PCP to have the expertise to treat you. Lyme is a complicated illness especially when you've had it as long as you have. You want to see a specialist. Not to mention, the other docs will totally dismiss Lyme ....
You might be interested in looking over Dr. B's diagnostic guidelines and treatment protocol at www.ilads.org. It will be a help for you to completely see what your dealing with as far as diagnosis and treatment.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I am going to try to attach a pic that I took of the test results. They seem blurry, but they were the best that I could do. Also, I am going to go on the chat at 8pm tonight. 8pm eastern, right?
Under the "RESULTS" category, it states "SEP REP A". Unsure what that means!!
Ahh.. theres no way to attach an image on here unless i save it to something like photo bucket first. shoot!!!!
-------------------- brian Posts: 9 | From Maine | Registered: Jan 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
It sounds like getting tested for lyme and tick borne disease is appropriate. Viral infection can also cause the same symptoms.
Please do some reading at www.hhv-6foundation.org. Read lots there, including the patients forum. Get tested for viruses too.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
brian, sometimes chat takes a while to get going ..... if no one is there at 8, try 9 .... or just sit there and do other things on your computer .... it will beep when someone comes in. It's Eastern time.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I never remember getting bitten, however, over the years, I remember once or twice having this red circle on my arm. Unsure if it was right or ledt. It was about 3 inches by 3 inches. I do not remember a bulls eye or a white center. I remember it was red and had a real numbing pain almost to the bone. Kind of the same pain I feel in my legs every day but localized on one area on my arm. I thougt that maybe it was an ingrown hair or a pimple at the time. It never excreted anything..was just circular and red. A bit warm I think, but I know I remember the numbness of it. I never said anything at the time because I thought that it was just a pimple/
-------------------- brian Posts: 9 | From Maine | Registered: Jan 2008
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posted
that's okay, half don't remember a bite. I remember bites, but never had a rash that I noticed.
A deer tick is as big as the period at the end of this sentence, so you easily could have missed it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Most people dont remember tick bite and your rash may have been lyme there are rash pics in newbie links I would suggest you get a LLMD and start treatment immeadiatly.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Yea, my Dr visit is Friday. If this is something that has been with me for 10 years..will meds def help? What a dumb question I know, but..having something in me, for ten years, if thats how long it has been, surely gave it enough time to do damage.
-------------------- brian Posts: 9 | From Maine | Registered: Jan 2008
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posted
WOW. You guys are really great with all your information and experiences. I am just so anxious on what the Dr will say tomorrow. I wonder if he will make a clinical diagnosis and then send out for tests to confirm. He seems to have always been open to things. He is in his late 40s..asian american and spanish...he dislikes administering meds it seems. He tries to go the all natural route which I like..but he is also very knowledgeable. I think that he is young and progressive enough to look at this as Lyme and not dismiss it. I guess anxiety is taking over and I am trying to convince myself that he will have an answer for me and I will not have to fight with him on it. Just looking at the tests that came back should be enough of a reason to restest I would think.
They were so vague!
-------------------- brian Posts: 9 | From Maine | Registered: Jan 2008
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posted
Brian, Good luck tomorrow! But please don't get your hopes up, as most docs won't go down the Lyme road. Also, my experience with the Mayo clinic, is that it is not "Lyme friendly", so it is a waste of time. I had lots of bloodwork taken from there and of course it always can up negative..
I strongly urge you to just get an appt with an LLMD ASAP as they can take awile to get in to. Most of your symptoms are extremely similar to mine, including the backwards spellings of "the" or "they" it drives me crazy!
I'm gald you are here, as it has saved me in my darkest days! Welcome!
Laura
Posts: 232 | From MN | Registered: Jul 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Brian,
A local doctor will run an Elisa and maybe a Western Blot by a local lab.
I would recommend you call Igenex in Ca. and request a kit for testing for Lyme disease.
Igenex only tests for tick borne diseases.
Ask your doctor to start you on some antibiotics (if he is willing)
At least 300 mg a day. Take for 28-30 days.
Then have them draw your blood for the Igenex Western Blot.
Greatest chance of having a higher number of positive bands.
In the meantime, please find a LLMD.
A regular doc will treat you for 30 days....not a drop in the bucket
When comparing to the ocean.
Also you may have co-infections such as babesia, or bartonella.
My Lyme activated my latent viral infections such as EBV and CMV.
That is why you need a doctor who specializses in this.
Hugs,
Geneal
PS Igenex recommends a 28-30 antibiotic run prior to testing
To "prime" the immune system so to speak.
Kills off some ketes and allows antibodies to be detected.
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Brian,
you might get more help if you break up your posts into 2- 3 sentence paragraphs and an extra line of white space here and there.
posted
Brian, I was 35 year undiagnosed and got better in a year of treatment, so yes, you can get better but it will take time.
I took the whole year of treatment and focused on getting better -- rest, exercise, diet, etc.
Keebler makes a good point ... many of the Lymies here with cognitive issues, can't read blocks of print. If you break up your posts into two to three lines at the most, then they can read it, too.
I understand, as I used to be that way .... they aren't exaggerating ... they really can't read it. Lyme affects everyone differently.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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