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Ila
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| Joined: | Fri Oct 5th, 2007 |
| Location: | Lenexa, Kansas USA |
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Posted: Sun Sep 27th, 2009 01:30 am |
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Joe, yes your symptoms are what many experience with late stage Lyme. The borillia bacteria may lay dormant for many years. The doctors who treat Lyme here use a Lab in California. IGenex in Palo Alto . that Lab will send you a blood draw kit. Blood is drawn on Mon - Wed before 2 p.m. and sent with a cold pack 2 day service. The doctor will need to fill out the orders and the IGg western Blot is around 100.00 and the IGm is around 100.00 for the 2 tests. this lab has the best testing available at this time, to my knowledge. This is a starting point, I believe long term antibiotics is the best way to fight this bacteria. The problem with Lyme is that when treatment begins patients may feel worse before they improve. When the bacteria die off toxins are in the blood and make us feel worse. Herx reaction. If you call our hotline we will send you an information packet.
will help in any way possible.
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LymeJoe
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| Joined: | Sat Sep 26th, 2009 |
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Posted: Sat Sep 26th, 2009 06:58 pm |
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I am new to this site. Hoping that someone might steer me in the right direction. I'm nowhere near KC.
31 years ago I was hospitalized for what was originally believed to be meningitis. I was running a high fever, chills, vomiting, had severe headaches. Spinal taps came back negative. I had some sort of brain x-ray/scan which didn't show anything. I was on antibiotics for 2-3 days. After the major symptoms were abated I developed a rash on both legs. My attending physician drew the conclusion that I was suffering from and advanced STD based on my recent discharge from the Navy and I had been in Asia 6 months earlier. The problem with that was that I had not been sexually active for 3 years. I got better, the rash went away and I went on with life.
4 years ago I came down with similar symptoms, though not as severe. Vomiting, disorientation, headache. Off to the ER. I worked outside (phone man) so exposure to ticks was quite common. The whole thing was dismissed as Norwalk virus. I had not eaten any food outside of my home during the Norwalk incubation period and no one in the household became sick. So much for that diagnosis.
Over the past few years, I have suffered from depression, anxiety, migraine-like headaches, fybromyalgia-like symptoms and angina symptoms. 2 months ago I had a seizure driving my work truck and had a minor collision. The EMT's thought I was having a heart related event so they threw me onto a helicopter. In flight I had a gran mal seizure. I spent a week in the hospital.
Since then my condition has worsened. I have speech and cognitive problems. I have tremors, nerve symptoms, more frequent headaches, dizziness, forgetfulness and have a rash on my back similar to the one 31 years ago.
So I am curious at this point that what I had 31 years ago may have been Lyme disease. At that time it was unheard of. I may have been bitten again 4 years ago and not known it(a few days earlier I had walked through tall grass and my jeans were covered with ticks). From what I have read 50% of people may never get the bullseye rash around the bite, or it may be in an in unseen area.
I realize I have been long winded, but I'm wondering if anyone else has experienced something similar. I understand that the bacteria can hang around in your system almost forever and continue to cause more acute symptoms.
Any help or advice would be appreciated. Thanks.
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Ila
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| Joined: | Fri Oct 5th, 2007 |
| Location: | Lenexa, Kansas USA |
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Posted: Thu Oct 23rd, 2008 01:13 am |
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Joe,
Yes, Many doctors who can not find an immediate physical reason look for mental illnesses instead. Many of our members suffer from unexplained headaches and fatigue. Most people do NOT see a rash (Only the "lucky ones" have a rash) I believe that around 20 % of those exposed to Lyme actually have a rash. This may be under your hair if the bite is on the head, also many people with dark complexions can't see the rash ( it could look more like a bruise).
The Lyme bacteria can lodge in the brain and cause lesions and cognitive problems, mood swings ( like bipolar), possibly autism, ADD and other brain function problems
Our doctors in the mid west have a false since of security that they don't need to worry about Lyme in Missouri or Kansas because it is a rare occurrence. I meet people every week who know someone who has Lyme or is suffering from Lyme disease. If it is so rare then why do we know so many people suffering with this illness.
My daughter was given 5 expensive screenings for Lyme over a 14 year period and they all came back negative, yet her symptoms continued to become more and more disabling. I read that the screenings were only about 10% accurate because the take your blood and run half the test and if that comes back positive then the lab then runs the more extensive tests on the left over blood which is now 1 to 2 weeks old. Most tests come back negative using that process and the CDC knows it is a bad test, yet doctors are encouraged to use the flawed testing procedures.
At age 23 we sent her blood to a lab in CA and ran 2 tests for $95.00 each total of $190.00 and found she had CDC positive Lyme. The blood draw is done the first part of the week and over nighted to Igenex in Palo Alto CA
The test must be ordered by a doctor They are the IGg Western Blot & the IGm western Blot. If your local lab needs a blood draw kit Igenex will send that to you with a overnight return label. This test is not 100% but in my opinion is in the 90% accurate range. Since the labs can only test for 2 of the 350+ strains of Lyme bacteria this is our current best lab to utilize. Our insurance reimbursed us for the tests.
My daughter has been on IV therapy for 3 and 1/2 years and physically no longer needs a wheelchair or walker. She is still suffering with inflammation and fatigue, migraines, and joint pain. This is not an illness which you recover from quickly but you can improve your quality of life and many are back to felling like they have most of their lives back.
I was checked last year and found that I also have the bacteria and that the few odd symptoms were the result of Lyme. I fell that it is better to start treatment as soon as possible to prevent total disability. The one down side is you may feel worse before you begin to get your health back. When the bacteria dies off it produces or releases a toxin that is like chemotherapy reactions. Many have nausea and pain with the die off, This will pass as you finally get the infection under control.
Let us know if we can be of further help.
Ila
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zossso
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| Joined: | Wed Oct 22nd, 2008 |
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Posted: Wed Oct 22nd, 2008 07:26 pm |
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Over 8 years ago, I recall going in to see my MD about a tick bite. During that summer, I spent a lot of time outdoors at Clinton Lake and had plenty of tick bites, but I seemed to have these flu-like symptoms. The MD asked about a rash, I didn't recall one. He said not to worry about it.
Roughly 6-months later, I had a psychotic episode and was diagnosed schizophrenia. Later that year, Bipolar I w/psychotic symptoms. It seems like I have been on quite a few medications for Bipolar, and with little luck. Headaches and fatigue have been the worst symptoms, two years ago I developed these muscle fasciculations (sp?) and I share many other symptoms common with Lyme's disease.
I do not have Lyme disease as far as I know, and am just resistant to Bipolar treatment. However, I'd like to be certain, as many of the symptoms overlap.
Has anyone on this list been diagnosed as having a mental illness, later to find it was Lyme Disease? It has been over 8 years since I went to the MD concerning a tick bite. If I have it, it would be late-stage. Would it be worth the money/time and lab tests to see if I actually have the illness? It appears from my recent research, that it is quite expensive to diagnose, and there is little they can do to treat this late-stage disease.
Thanks,
Joe
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