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General Site Info => General Discussion => Topic started by: Lt.Del on August 13, 2010, 05:09:09 pm
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I want to do my best to spread the word of Lyme Disease and how terrible it is and so under diagnosed it is. If not treated at first symptoms, chronic Lyme will result which leads to some ugly stuff. People should wear insect repellant when outdoors and check for ticks. Here's my story so far....
On Aug 1, I had terrible fever, chills, sweats, migraine, muscle aches, but no congestion or cough or sore throat. I couldn’t understand it. I went to the doctor Monday Aug. 2. Not my normal doctor, he was on vacation. I was tested positive on the ELISA blood test for Lyme Disease on Aug. 3 when blood results came back. They sent my blood for the Western Blot blood test. The doctor called me to tell me the results, positive for Lyme Disease. I knew nothing about Lyme except it is tick borne and gives you a bulls eye rash. I began researching the stuff. Apparently up to half the times, the person doesn’t recall a tick bite and seeing no rash. I learned that if not caught early, chronic Lyme Disease is some ugly stuff. If not treated right away with heavy antibiotics to rid your blood of the sprochete bacteria, lyme disease becomes chronic lyme which leads to MS, ALS (Lou Gehrig’s disease), paralysis, chronic depression, fibromayalsia, arthritis, ......blah, blah. So, Monday I visitied with my primary doc, he was on vacation last week. He reviewed the file and blood results and consulted with a "infectious disease specialist". He then had his secretary call me.
Now, mind you, I have been researching this Lyme stuff for over a week now. I have read case after case where these sufferers wish they had gotten a second opinion when this stuff could be treated, now they are suffering all the above diseases. I have read where these blood tests are usually unreliable and should be repeated and then taken into conjunction with the symptoms to lead to a diagnosis. I read about the Western Blot blood test, how there are 3 bands they look at. If positive for 2, it is usually considered positive, but, even if one is positive, treatment should be started because the other bands wont read positive for several weeks.
So, the secretary called me to say the doc thinks I just had a bad virus last week. I am only positive on one of three bands on Western Blot. Discontinue meds and have a nice life. (my words)
So, I politely asked for a copy of my results and desired the doc to call me back. I had my research out in front of me. How it takes several weeks for the 2nd band to reach positive status, etc... He called me and I asked which band was I pos. for. He stated band 41 (which means my antibodies are fighting a protozoa with a whip or cilia for motion). So I told him, ok, that is the most common to test pos for. he agreed. Then I said, band 39 usually wont show pos for a couple of more weeks. He agreed. I went on about case after case of under diagnosed Lyme where people suffered big time later down the road and the complications they are experiencing now and must be medicated for years and years to clear it out now because they didn't clear it out when they could. The doc continued to listen, not denying anything. I told him this is my health, my body. I have to do what is right. I am not the doc, but, I am worried about the difficulties of chronic Lyme Disease if not treated initially. I told him i'd like to error on the side of caution, versus becoming disabled in a year or so because the spirochetes bacteria are having a field day with my immune system and blood and nervous system and brain because we aren't treating it, like so many other cases.
He knew I knew what i was talking about. He didn't deny anything. I was ready for battle. He finally said, "here's what I'll do. I'll prescribe you three weeks of doxycycline 100mg 2x day for three weeks and recheck blood then." I said thank you. That's all I want, to be sure I act quickly on this stuff.
I don't know why the CDC is so frekin conservative when diagnosing Lyme. Yes, it is a new disease (1982) and many people don't kow much about it yet, especially chronic Lyme. I don't want to be a statistic and then wished woulda, coulda, shoulda. There are theories that ALS (Lou Gehrig's Disease) and some MS and fibromyalsia are all related to Lyme and are received either by tick bite or through the mother's womb prior to birth. Many times the mother doesn't even know she has it.
So, I am on some more potent meds. I worked Mon - Thurs this week. Became extremely tired at end of each day, lack of energy. I almost fainted today about an hour after taking the meds. I had to lay down for a couple of hours.
So, the doctor wanted to close the book on me and chalk up my sickness last week to a virus. I wasn't about to take that answer. 103 degree fever, chills, sweats, migraines, muscle aches, no congestion or cough or sore throat. Ain't no virus! Why did I test pos. for 41 on Western Blot?
So, I hate ticks. Never wore much insect repellant because skeeters never bothered me. That's gonna change now. I won't stop my love of the outdoors, going camping next weekend. Taking Off spray with me.
So, between the symptoms and the med side effects, I don't know which is which at this point, I will survive and am proud I stand up to the health authority.
I have links posted on my www.HikerMania.com website relating to Lyme. Please use caution when outside.
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Thanks for taking the time to share, I know I really appreciate it. Hope you get back to 100% real soon!!!
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Bummer Sgt. Hope you are on top of everything and have a spedy recovery.
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when my dad was having muscle fatigue and just being fatigue too fast the docs said it was lymes be the meds weren’t helping they couldn’t figure it out come to find out it was Parkinson’s but my dad being like he is never went to the doc till he thought he had a stroke he was dragging his foot around like it was dead almost like a pirate lol. then with rabies we had a raccoon attack our dogs at the time it was only a hotdog and chocolate lab we got out dogs inside and remind you this was in the middle of the day this raccoon wouldn’t run away from us so we blasted it once in the head (not supposed to do that cause the part they test for rabies is in the brain) lucky we didn’t destroy that part and put it in a trash bag then called dnr and they told us to go to the clinic and start our rabies vaccination. With rabies by time the symptoms start showing it to late and dead is almost promised. Well lucky we started out shots cause the raccoon came back positive I had to get I want to say 8 shots in the legs and arms the first day alone ::)
thanks for sharing all that with us sgt
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It must be worse for us old people ;D
Our son works at the Boy Scout Camp and last year he sends me a pic of under his arm that is a bulls eye I told him dont tell mom but tell someone at camp or I am coming to take you.
It was lyme I want to say he had to take the stuff they give for Anthrax he was never tired or any other bad symptom. Ahh to be young again
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stuff they give for Anthrax
Lucky he got it early. I am on that stuff for anthrax, doxycycline. I didn't have a rash, but sure did have the classic symptoms. Still get fatigued and my muscles ache right now.
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Thanks for posting that up Sgt. My backyard is infested with ticks, fleas, skeeters, and other crap...and I never knew about lyme disease. Hope you feel better soon.
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stuff they give for Anthrax
Lucky he got it early. I am on that stuff for anthrax, doxycycline. I didn't have a rash, but sure did have the classic symptoms. Still get fatigued and my muscles ache right now.
Yes lucky he is nothing after the 4 weeks of the drugs heck he help his cross country track team win the State Championship in the fall then he went to states in the spring for Pole Vaulting again the value of youth..
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it's not only being a youth. There are plenty of stories where children have gotten it from mothers' wombs and it goes years without symptoms, then finally problems arise in the children and they have a heck of a time ridding the chronic aspect of it--it's just not one of those things that are tested when you are born. Then, once paralysis sets in, or fibromyalgia, or MS, then they say, "oh, he was positive for Lyme when he must've been born". years of treatment await someone like that.
Your son got treated very early, and, being an athlete helps tremendously. He has lots of oxygen flowing through his blood because of his workouts. Spirochete bacteria die in oxygen rich blood. They also die in temps over 99 degrees. When you run, your core body temp increases. Makes for a very bad environment for the little invaders to thrive. I used to run cross country and marathons in my teenage years. I may have to go back to running to increase my immune system. I do want to run the Richmond 8k in November with my wife--an ambitious goal evern moreso now.
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come to find out it was Parkinson’s
Chronic Lyme does lead to Parkinson's in some people. Go figure. It invades the nervous system and, like Lou Gherig's disease ALS, Parkinson's results when someone cannot control the movement of their arms or other parts of their bodies. It is a shame.
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Thanks for sharing that with us and helping to educate us on Lymes Disease Sgt. I never knew Lymes had so many harmful after effects on the body. Hope you're back to 100% soon.
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I never knew Lymes had so many harmful after effects on the body. Hope you're back to 100% soon.
thanks for the well wishes everyone. Gettin better. Minor muscle aches and slight fatigue, but gettin better.
I had no idea about the effects of Lyme prior to me researching it after the diagnosis. Really scary stuff and there is no standardization on how to treat. It's one of those deals, ask 12 doctors, get 12 different answers. Once someone gets affected do they figure out what it is and what it can become. I still say the CDC is pressured by HMO's and other insurance companies to not recognize chronic Lyme--completely going against the known research that is out there with all these case studies and what the facts tell us. Lots of frustration. Hopefullly mine was caught soon enough and I'm able to wipe it out and it won't become chronic. That is the key, so BE AWARE! And to make it worse, Of course, I care about my health, but, I still have 10 months to lock in to 20 yrs at the sheriff's office. If a few months from now i start to have nervous system issues where i can't control my muscular movement, or, worse yet, memory problems because of brain infection, I won't be able to work and won't retire w/ my full benefits.
Best treatment is be careful around the outdoors, wear repellant and check for ticks often. The average "reported" cases is 8 per 100,000 people are infected. In Long Island NY, it is 1500 per 100,000--the highest in the world. It was named in 1981 on behalf of many who shared similar symptoms from Old Lyme, Conn.
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Good thing you caught it early. I worked with someone that got it. Some days he wasn't able to get out of bed from fatigue.
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It's one thing to fight a disease, but, you also have to fight your health insurance companies and doctors who don't believe it is a common disease, and are apprehensive to give you antibiotics. I had to explain my reasoning prior to the doc giving me what i need. That frustrates me. Watch this trailer...
http://www.underourskin.com/watch.html
i don't want to end up like this. Had i taken my doc's opinion as truth, i wouldn't be medicating myself right now and in 8 months where would i be? Anger doesn't describe it.
more links on lyme www.HikerMania.com
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This has got me thinking about my dad now if he did get his Parkinson’s from lymes or what if they misdiagnosed him from the get go
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It happens all the time. Lupus, Multiple Sclerosis, Parkinson's, Bell's Palsy, Reumatoid arthritis, depression, the list associated with untreated Lyme goes on and on and on. The good news, is that some things are reversible. It would do him good to contact a LLMD, a Lyme Literate Medical Doctor. I have a few names if interested. The problem is health insurance may not cover the visits/meds. They won't acknowledge that it is associated with uncorrected Lyme.
Look at the videos and literature I linked to from my hikerMania.com website. If he starts getting treated for chronic lyme, he may see many negative symptoms associated with Lyme (nervous system, etc..) get better. I am still having fatigue problems and muscle aches and it makes me furious my doc wanted to say it was just a virus.
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Some Parkinson's research....
from:
http://findarticles.com/p/articles/mi_m0ISW/is_252/ai_n6110580/
"Lyme Disease was initially regarded as an uncommon illness caused by the spirochete Borrelia burgdorferi (Bb). The disease transmission was thought to be solely by the bite from a tick infected with this spirochete. The Bb spirochete is able to burrow into tendons, muscle cells, ligaments, and directly into organs. A classic bulls-eye rash is often visible in the early stage of the illness. Later in the illness the disease can afflict the heart, nervous system, joints and other organs. It is now realized that the disease can mimic amyotrophic lateral sclerosis, Parkinson's disease, multiple sclerosis, Bell's Palsy, reflex sympathetic dystrophy, neuritis, psychiatric illnesses such as schizophrenia, chronic fatigue, heart failure, angina, irregular heart rhythms, fibromyalgia, dermatitis, autoimmune diseases such as scleroderma and lupus, eye inflammatory reactions, sudden deafness, SIDS, ADD and hyperactivity, chronic pain and many other conditions.....
Dr. Joanne Whitaker relates that nearly every patient with Parkinson's Disease (PD) has tested positive for Bb. Dr. Louis Romero reports that 3 patients with PD are 99% better after TAO-free cat's claw (Uncaria tomentosa) therapy. When Dr. Mattman cultured 25 patients with fibromyalgia all subjects had positive cultures for the CWD Bb. which causes LD. She relates that Bb can be found in tears and could thus easily appear on the hands where touching could spread LD. Several families are now documented where nearly every family member is infected. How sick the individual patient becomes probably relates to their initial spirochete dose, immune system, detoxification capability and stress levels."
I have doctors' names who specialize in Lyme in MD, give me a PM and I'll send you the names: one is in Rockville, one in Towson, one in Baltimore, one in Waldorf.
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http://wjz.com/local/parkinsons.disease.cure.2.1877151.html
Looks really promising
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wow, you have done your research. I am glad you convinced your doctor to not just give up, and dang glad we don't have universal health care. We don't have many tic's in California, but now I will be looking out for sure. Thank you for the info and hope everything works out, best wishes. Tom
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thanks Tom
And yes, Frogman, Johns Hopkins is one of the primary researchers on Parkinson's. Which leads to another point. The Bayh-Dole Act of 1980. This act pushed by Bob Dole and Birch Bayh in 1980 made it so that universities could profit from their research. What is wrong with that? This: The gov't, your tax money and mine finances in grants a large majority of medical research for universities. Bayh-Dole said that the gov't is tired of patenting the research and information uncovered--too much work. So, the Act was passed to allow universities to profit from the research we pay for and they don't have to make it public, for fear of losing their vested interest.
That's right, we pay for their research, they don't have to publicize what they find out about diseases and such so info is not shared for fear of them giving out their trade secrets. They'd rather hang on to it to see what the info is worth to a pharmaceutical company in drug manufacturing after decades of preparation.
They don't share their info of important findings.
So, this happened in 1980. When was Lyme first discovered? 1981. Why do we not know a lot about Lyme? Because these researchers do not share information...they patent the info for future possible profits.
Thanks Bob Dole.
http://en.wikipedia.org/wiki/Bayh%E2%80%93Dole_Act
www.HikerMania.com
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Got my latest blood tests back a few days ago. I am now negative on all phases of the Western Blot test. Success! The little flagella protozoans are showing wiped out--or they are hiding very well now since my antibiotic treatment, waiting to come out and play when the coast is clear. The western blot measures one's antibodies and what they are fighting. Right now I am clear. However, being only 60% reliable, many have tested negative on the western blot only to have symptom reappear a year later. But, that is the best test technology offers presently. So, the results are better than last month.
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Great job sgtdel, we are all pulling for ya..... Tom
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thanks Tom. I am symptom free. According to my research, If I remain so for about a year, I think I will be considered 'out of the woods', pardon the pun.
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Well it's great to hear someone is getting better than worse, I myself just got home from surgery, I put it off and couldn't wait no more, so now I get some time off.... Tom
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Now the easy part, rest and recuperate. Hope all goes well.
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Glad to hear the results!