Lyme disease and the ticks that carry it

December 02, 2021, 11:22 AM

Dreamerx4

Want to share what little I know about Lyme.

"Once you have it, you always will, it may go dormat, but can rise up again and again."

MOST Doctors still believe this, and simply treat with 28 days of Doxy to calm it down.

My wife was treated here in northern Virginia, she had a picc line, and every day for a month she self administered a course of antiobiotics. She had a nurse visit daily and then weekly. Met with Dr, and now has been cured of Lyme.
That month was rough, and she was still rough for another, but now is back to complete health.

The treatment was close to $7000, but has been life changing.

Lyme can be completely debilitating. Now, there is a cure. Someday, maybe the cure will be easier..

December 02, 2021, 11:52 AM

justjoe

I've been very sick with Lyme and a common co-infection called Bartonella for about two years. For about three months I could not get out of bed. My feet and legs went numb, with a lot of pain, depriving me of sleep. An MRI showed inflammation of my spinal cord from t6 to t12, but the neurologists had no idea of the cause. A Lyme titre came up negative. So they just kept giving me MRIs for about a year. I had 5 MRIs. Spinal tap ruled out all the other suspect causes. All this while the Lyme and Bartonella bacteria were multiplying.

Then I learned that there are "Lyme literate" doctors. There is no formal specialty, so that is how they identify themselves. The first thing this doc did was send a blood sample to Igenex Lab in California. Lyme is notorious for producing false negative tests. Lyme literate docs from all over the world send their samples to Igenex, which has the technology and expertise to make correct diagnoses. My blood sample showed a severe Lyme infection, probable "late stage Lyme" meaning I'd had it for a good while.

I don't want to go on and on about symptoms, treatments, etc., but if anyone wants more such information feel free to email me. I can walk now, more or less normally, usually with a cane, but only for about 50 yards maximum. When my feet started getting numb, I had been going to tae Kwan do classes two or three times a week, as I had been doing for 30 years. I kept going until my feet were so numb I would throw a kick and fall over because I didn't know where my feet were.

What I want to say is this. Catch Lyme early, within the first few weeks, and a week of doxycycline will knock it right out. How to accomplish this if you are unlucky enough to be bitten by a black legged deer tick? I have talked with many many Lyme victims and only a handful ever saw the bullseye rash. (I did not.) Here is my best advice: if you get sick with flu like symptoms but they persist beyond a week or two, find a "Lyme literate" doc and have a blood sample sent to Igenex Lab.

Before I got sick, I had no idea Lyme could be so bad. I talked with someone, for example, who had the bacteria attack her brain, "Lyme meningitis." She nearly died. Others have suffered permanent neurological damage, affecting them in all sorts of really bad ways. Only more time will tell how much I can recover.

Yes, I'm all in favour of the solution someone proposed earlier-- every flea, tick and mosquito-- kill every fucking one.

December 02, 2021, 12:50 PM

Vanwall

quote:
Originally posted by justjoe:
I've been very sick with Lyme and a common co-infection called Bartonella for about two years. For about three months I could not get out of bed. My feet and legs went numb, with a lot of pain, depriving me of sleep. An MRI showed inflammation of my spinal cord from t6 to t12, but the neurologists had no idea of the cause. A Lyme titre came up negative. So they just kept giving me MRIs for about a year. I had 5 MRIs. Spinal tap ruled out all the other suspect causes. All this while the Lyme and Bartonella bacteria were multiplying.

Then I learned that there are "Lyme literate" doctors. There is no formal specialty, so that is how they identify themselves. The first thing this doc did was send a blood sample to Igenex Lab in California. Lyme is notorious for producing false negative tests. Lyme literate docs from all over the world send their samples to Igenex, which has the technology and expertise to make correct diagnoses. My blood sample showed a severe Lyme infection, probable "late stage Lyme" meaning I'd had it for a good while.

I don't want to go on and on about symptoms, treatments, etc., but if anyone wants more such information feel free to email me. I can walk now, more or less normally, usually with a cane, but only for about 50 yards maximum. When my feet started getting numb, I had been going to tae Kwan do classes two or three times a week, as I had been doing for 30 years. I kept going until my feet were so numb I would throw a kick and fall over because I didn't know where my feet were.

What I want to say is this. Catch Lyme early, within the first few weeks, and a week of doxycycline will knock it right out. How to accomplish this if you are unlucky enough to be bitten by a black legged deer tick? I have talked with many many Lyme victims and only a handful ever saw the bullseye rash. (I did not.) Here is my best advice: if you get sick with flu like symptoms but they persist beyond a week or two, find a "Lyme literate" doc and have a blood sample sent to Igenex Lab.

Before I got sick, I had no idea Lyme could be so bad. I talked with someone, for example, who had the bacteria attack her brain, "Lyme meningitis." She nearly died. Others have suffered permanent neurological damage, affecting them in all sorts of really bad ways. Only more time will tell how much I can recover.

Yes, I'm all in favour of the solution someone proposed earlier-- every flea, tick and mosquito-- kill every fucking one.

I’m currently recovering from a bartonella infection. Various symptoms started last January. I ended up spending 49 days in the Cleveland clinic. They attributed my infection came from my pet cat. VERY hard to diagnose. My bartonella infection attacked the aorta heart valve, kidneys,infected a year old knee replacement. I ended up having a tavr aorta valve procedure and then open heart aorta valve replacement plus the opened up the knee to clean out the infection.

They tested for Lyme and the results were negative. To confirm the bartonella infection they sent sample out for testing. The infectious disease doctor warned me that it was difficult to culture and my require a second test.

Initial diagnosis was an auto immune but not all the symptoms fit. It was weeks, one tavr procedure before diagnosis.

Recovery is slow but all signs are good. Knee will never be the same but I can live with it.