OT: Lymes Disease Problem

[MorandiWine]

Hi everyone,

This seems like an odd question but have any of you had or know anyone who had Lymes Disease??

Long short of it is that my uncle has the disease and it is not common out here on the West Coast and the doctors are not listening to the only Lymes Doctor out here. They need more doctors telling them the same thing! They are going to take him off the meds that the Lymes doc suggested early and according to the Lymes doc he will be dead in a week after that.

I need help!!!!!!!!!!!!!

Please if you know anything send me a PM, email or call me!

Thank You,

Tyler
408-348-8058
pedologo@hotmail.com

 

[DMBillies]

Sorry to hear that. I've only ever had early stage Lyme disease (which I actually got multiple times as a kid). I know they always did blood work on me (if they suspected I had it) and then treatment for when you catch it early is usually just an oral antibiotic. I grew up in Southern NJ, which, despite Jersey's reputation actually has a ton of pine forests and the highest deer population per square mile of any state in the US (despite the fact that they now allow you to take unlimited antlerless deer and two antlered in just about every part of the season). Since deer ticks carry Lyme disease... you get the idea. I remember multiple times picking in excess of 20 ticks off of me after playing around building forts and whatnot in the woods.

Good luck getting the answers you need.

 

[james3370]

one of my myspace friends (a musician who was in NYC) contracted it & it was quite debilitating for her. haven't talked to her in awhile, so not sure how she is doing now, but here is her blog about it.......

http://blogs.myspace.com/index.cfm?fuseaction=blog.view&friendId=2095740&blogId=434952529

On June 7, 2008, I was bitten by an infected deer tick. I contracted Lyme disease, and I was prescribed 3 weeks of oral antibiotics (Doxycycline). Lyme disease is a bacteria which eats your red blood cells and the protective coating around your nerves. Lyme often simulates Multiple Sclerosis, which has been the case for me. The bacteria found in your muscles and joints can be successfully treated with oral antibiotics. Those that penetrate the spinal fluid and brain must be treated with I.V. antibiotics. Four days after the tick bit me, I was no longer able to walk up the subway stairs. I could no longer work, because the commute alone exhausted me.

Some of my difficulties in getting the right diagnosis and treatment stemmed from the fact that I have an auto-immune disorder (in plain english, my body reacts differently than the average healthy body) For example, my resting body temperature is 97.1 degrees Fahrenheit. Every time I went to the Emergency Room, they would take my temperature. Though I was shaking with chills, my temp would read 99.5, which for the AVERAGE person is slightly above 98.7. However, for me, that's a 2.4 degree increase. For the average person, that would be like having a fever of 101.1 degrees. Yet every time they took my temp, they marked me down as having "no fever". This was a crucial mistake, because fever is one of the primary symptoms that indicates the presence of an active Lyme infection.

One thing that really helped with the pain was a Vitamin regime I saw on Oprah, of all places! Apparently, I had a Vitamin D deficiency that was aggravating my muscle pain and was preventing my metabolism from regulating my body weight properly. I started taking Vitamins A, B, C, D & E, and within ten days, I had greater mobility and much less pain. I also got my appetite back and my brain was no longer in a fog. I was still walking with a cane, but I was no longer bed-ridden.........

I am still having difficulty walking; I have constant pain in my joints & muscles that wakes me up at night. The infection caused nerve damage in my legs. I am 29 and I move like an 80-year-old. I have been told that a realistic time frame for a full recovery is six months. So I had to temporarily relocate, because I am too sick to live in NYC alone. I need to live in an area where I can drive, rather than walk, everywhere. Here in Virginia, there are benches everywhere on which I can rest. There are motorized carts in all the grocery stores so I can shop. I can drive thru restaurants and pharmacies. As humbling as it is to admit, this is the best place for me right now. The medical care here in Winchester is second to none. I am amazed because every doctor I have seen has been competent AND compassionate. One internist, an Indian lady who referred me to a neurologist (who specializes in Lyme), hugged me goodbye after our first meeting! I think the NY doctors could take note; they all seem to be too busy to treat the patient like a human being or listen to what the patient is telling them.

 

[MorandiWine]

Thanks for all the input everyone! We are trying our best to find some additional help from Lymes doctors to try and convince the Kaiser doctors to cntinue treatment for Lymes.

Here is was I wrote in another forum to bring you a little more up to speed::

Thanks everyone! The problem that we are having is that there are no Lymes doctors here in Ca that Kaiser will recognize. We need to have a Lymes specialist in an area the has more Lymes than out here to talk to these docs. They are going off of the CDC guidelines which only treat early stages and not chronic Lymes (many years of infection). My uncle has the chronic form. The symptoms started to manifest themselves about three months ago and was mis-diagnosed by his doctor in San Diego. Not having full faith in that diagnosis, he got second and third opinions that led him back up to the Bay Area to a Lymes specialist. On the way to his first treatment he went into cardiac arrest and has been in Kaisers hands ever since. That was three and half weeks ago. The Lymes specialist did a genetic, blood and urine test all of which came back POSITIVE for the Lymes bacterium. Kaiser refuses to aknowledge the tests, insisting on the original ALS diagnosis. BTW, not all the proper protocols were followed to get a difinitve positive on ALS, never the less they still insist on ALS. This is WACKO!!!

Again if anyone knows a Lymes specialist or knows anyone who does please call me!!!!

Thanks

Tyler


Again thanks for you interest and replies, every little bit helps at this point!

tyler