als/lyme

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als/lyme

Postby eric on January 25th, 2005, 7:59 pm

remember lyme can present with als like symptoms as documented by the national institues of health. alot of people never get a rash,
always keep tick born disease in mind when not able to obtain a diagnoses.
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Postby dwl on January 26th, 2005, 3:33 am

is your computer set to auto-post these messages once every 2 weeks?
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is my computer set to auto post for lyme

Postby eric on January 26th, 2005, 10:06 am

well dwl how are you?hoping you are doing well, i like to remind people that bfs can be a manifestaion of lyme disease, that is supported by our government! also I might add that there is the european strain and the american strain. it is now known that we have the form in europeans right here in the usa, this strain of spirochete affects the nervous system by inflamming the nerves, no test will ever pick up lyme disease as most of the testing is proprietory to one company, other companys that test dont have the rights or advanced equipment to pick this up. so these people are not diagnosed and get worse over time.. a spirochete is the bacteria of lyme disease and also of syphilis, disease can and does manifest as a type of false als. it is treatable so therefore that it why I am here, also the ucsf memory and aging unit is requiring people to be heavily checked for tick born disease when sending your test results to this orginization. they check for cjd and you might not know what that is but it is rare and fatal , tick born is not! so they see alot of people who dont have cjd or als or other untold diseases so why not check out the most likely cause, lyme,babesiosis,erlichiosis,bartenella, and the list goes on!! there are no tests that can really pick it up and doctors dont know about it so they wont try to diagnose it.. anyway I am here for you dwl and for other people that may have this type of disease lurking in the midst, by the way the gulf war syndrome was tick born and these people have gotten better, they also had bfs. any thank you for replying and see you next week!
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question about LD

Postby pred on January 26th, 2005, 3:29 pm

Hi Eric,

my name is Pred and I am writing from Germany. I have seen in several posts that you are very familiar with lyme disease so I wonder if you can help me in figuring out what my symptoms may mean.

Last year I came back to Germany from a business trip in New Jersey. Then 2 days later I started having diarrhea along with a persistent pain in my brest. I am sure my twitching started at this point in time too, but I considered it as normal and did't pay much attention to it. After a couple of days I noticed some heart arythmics and a horrable dizziness coming along with a buzzing. I was so afraid of having a heart problem but all examination I did was negative. As time went by my twitching got worse and it hit a random spot almost every minute. Also I started having a pain in my testicles. I did a lot of other exams, like EMG, MR of the head etc. but there was no pathological report. (Also a blood test for lyme disease was made, which was negative at that point in time)
Then last year in december i did another blood test for lyme disease which was positive! now I am very confused because here in Europe there is no common agreement of doctors on how to interpret the blood tests as well as how to treat lyme. So I'd like to ask you to help me out if you can. Let me explain:

Here the doctors are telling me that there is no 100% true blood exam for LD. They say that there are two procedures. The first one is the ELISA(like a common search test) and the second one is the Westernblot (like a confirmation test).
Now both showed positive in december whereas the first exam (ELISA only) in may last year was negative. Hence it is very likely that I have lyme but my doctor was saying that I do not have the typical symptoms of lyme disease and also I do not recall a bite by a tick or sth.. He also told me that about 10% of the population here in Germany will have a positve blood test for LD (and are not developing LD) and that about 10% of the blood exams are falso-positive, which means they show positive whereas the patient does not have LD.

Anyhow I started a 3 weeks antibitics therapy in december with tetracycline and by that time my twitching even got worse! Now my doctor is saying that I probably do not have LD because the symptoms should have gotten better by the treatment of antibiotics.

Now I am very confused because the circumstance that the twitching got worse may also be a kind of herx reaction.

Now what do you think is likely? That I have LD, even if I do not recall a tick biting me, my blood exams show positive and I probably have a kind of herx reaction?
Or I do not have LD because the blood exam may be false-positive; there are no "typical LD symptoms"; there is no tick biting me and the symptoms should have gotten better?

I would apreciate if you could give me your thoughts.

Thanks in advance
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tick bite

Postby eric on January 26th, 2005, 7:49 pm

pred: you sound like you have lyme disease! there are no false positives in my book and the reason is if it is false positive then why take the test. you have lyme, now testicular pain is common for lyme, also I was on 400 to 600 mg a day of doxy for a year and a half. 3 weeks is ridicules. you need to be treated now. it takes a long time to get thru this and there is a rash only 30% of the time. let me know what happens, also the germans have lyme in germany and it is all neurological, its bands are 23 and 34 check them out.. you also need to be tested by someone who has the leading test that are accurate and that would be igenex,
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Postby dave y on January 30th, 2005, 7:27 am

There are most certainly false positive test results in lyme tests, and Igenex itself has in the past been investigated for giving false positives. I don't know what the outcome of the investigation was though.

Whatever course you choose to follow, remember lyme disease diagnosing is very controvorsial right now and it's hard to know what to believe. Me, I don't know.
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lyme

Postby eric on January 30th, 2005, 1:21 pm

if you test positive get treated! in my book there are no false positives, if so why have the test! igenix has the best test in the world as they have much more advanced testing, the others dont want to lose the money,,
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Postby Stephanie on January 30th, 2005, 2:34 pm

Igenex is more sensitive than other labs, so it will pick lyme up more readily. Tests will only show if you have been exposed to Lyme during your life. If you have clinical symptoms you should be treated. If you don't, then it's up to you & your Dr to decide.
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My bands are 41 and 39

Postby pred on January 31st, 2005, 5:01 am

Hi Eric,

I checked the Westernblot results today and only two bands were positive:

IgG --> 41 and 39
IgM --> 41 and 30

What is your book saying about these bands?

I read that 39 is very specific for lyme but there are cases were band 41 reacts very strongly, which results into a marking of band 39, too. In this case its hard to differenciate between a real 39 band or just a severe reaction from band 41 marking band 39 also.

Also the ELISA test was positive with more than 290 antibodies. I think the normal value should be about less than 100.

In this case its very likely that I have lyme but there is not true evidence.

Regards
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you have lyme

Postby eric on January 31st, 2005, 7:56 pm

find a llmd to take care of you! you have lyme disease, cdc guidelines are 41,39 bands is active lyme.
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you have lyme

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