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Old 04-02-2010, 12:49 PM #16 (permalink)
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Default Re: Lyme Testing?

Told ya...LP negative for Lymes..but I have a flaming case of it...hmmm...oh MRIs normal and no MS. Going to LLMD and Naturotherapist.
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Old 04-04-2010, 01:40 PM #17 (permalink)
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Default Re: Lyme Testing?

Hi I had forgotten I'd posted on this thread and just came across it again, from reading the many comments I would highly recommend you all have a good read of Burrascano Guidelines found on ILADS - International Lyme And Associated Diseases Society website then read the presentations to the review panel also found on that website.

Blood tests can miss 50% of cases of Lyme and spinal tap is about 7 % likely to find lyme, PCR is about 10%.

Lyme is treatable MS and or ALS are degenerative conditions treating the symptoms not the cause.

Most doctors the world over follow IDSA discredited guidelines, before consigning oneself to an assumed diagnosis do as much research as you can on ILADS guidelines before discussing with doctors who will most likely be following IDSA guidelines.

On ILADS presentation Lorraine Johnnson presents and about 2.20 along she shows her spect scans of her brain before and after lyme treatment quite enlightening. Many lyme doctors treat MS/Lyme infact I think it is three, that I heard say that every MS case they treated had Lyme and improved on Lyme treatment.

If there is any possibility you could have lyme you need to consult with a Lyme Literate Medical Doctor LLMD and yes it may mean a trip to USA. I am in touch with several patients including doctors who have travelled to USA from UK to consult with Lyme Doctors but are or have since recovered.

Try joining some lyme forums Canlyme is excellent but Eurolyme is also well respected throughout the lyme world.

Good luck to you all but most important get well informed.
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Old 05-16-2010, 09:52 AM #18 (permalink)
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Default Re: Lyme Testing?

Tom is back on the Lyme bandwagon. There was a show on the TV this week where Goldhawk has picked up the banner so to speak. Tom and his mom are both running around saying "what about lyme?"
I keep saying "Just pay Dr. Bagdhalian the money to get the blood test in the USA"
They want me to start buying books on Lyme, talk to the people from the show etc....

Argh! I have been in this stuff up to my eyeballs for 10 years now and I do not want to start all this again. These two think one show has given them more info than I have collected. I wish they would take the ball and run with it. I am tired and am so depressed.

Tom has had a steady decline with total ALS symptoms. He has not yet (in 10 years) had any sort of break or remission, return of function etc.
Even Dr. Bagdhalian said he doubted Lyme, but would send the blood test to the US Clinic if Tom wanted. That was years ago and Tom didn't. Tom is pursuing it now and I am encouraging him. Just to let him continue to live in denial until the results come back.
What of Toms symptoms is not typically ALS? He has an unexplainable rash that does not go away without the use of a specially designed skin cream that has a lot of camphor in it among other things. He is now dizzy most of the time.
When the doctors were giving Tom the "jug of juice" blood products to see if there was any change in his condition he developed a rash then too. That juice also made him feel really sick. What ever it was supposed to help, it was not what he had because they quit the treatment and he is still wasting away.

I have a rash for a year now too. I am depressed and suffer anxiety attacks. I have had a stiff neck for 5-6 years.
Perhaps I have Lyme disease too.

NOT. It is just so easy to get symptoms when you read about it. I have stress issues because I am a CALS.
I am so sad for everyone who has Lyme or any other disease that cannot be diagnosed easily and quickly and especially for everyone who is trapped without hope for a cure.
That is why I cry to hear Tom clinging to the hope that he has Lyme.
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Old 05-16-2010, 11:40 AM #19 (permalink)
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Default Re: Lyme Testing?

Did they do a Western Blot after the ELISA? They always do that here when it comes back positive or equivocal(as mine did).

What tests did they do for autoimmune disease? They did thyroid, celiac, ANA, and Rheumatoid Factor for me(all came back normal). A rheumatologist also gave me a physical exaimination where he checked my reflexes and moved and squeezed my limbs in a variety of ways. He then said Lyme is pretty much the only thing I could have.

Pretty much all of your symptoms are similar to mine, and I've noticed them gradually get better on Doxy. My family doctor said 21 days would be enough, but my Rheumy said 40 at minimum, and after that we would discuss IV drugs.
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Old 05-18-2010, 08:39 AM #20 (permalink)
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Default Re: Lyme Testing?

I remember the "jug of juice" is IVIG. This was done at Sunnybrook, you sit in a chair for a couple of hours hooked up to IV. The rash would appear/reappear after the visit and he never felt well, and was really tired. All they talked about was G proteins. A referral to Dr. Bagdhalian for a more experienced Lyme doctor meant they were at least willing to let us look further. Tom got a MEGA jar of antibiotics that took a month to consume, but had no change or improvement. I have no real techno lingo but my understanding is that if this man has had Lyme for 10 years now the outcome of antibiotic treatment would not be good anyway. If you have lyme can your symptoms come and go on their own? If so, Tom has not had any break from continuous progression and without THE blood test that is MY clinical analysis to rule out Lyme.
Weak, huh?
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Old 05-18-2010, 11:50 AM #21 (permalink)
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Default Re: Lyme Testing?

Hi,

I see Tom has had ALS for 10 years..wow..he must have a really slow progression. What is his function like right now? As far as Lyme progression goes..its a sticky but most people who test CDC positive and dont have to send their blood off to that shady lab in California, I have observed these patients to have gradual unending progression left untreated.

I myself have had Lymes going back to 2004. I have had a gradual but slow decline ever since. Beginning with chemical and food intolerance, joint pain, fatigue over the years until 2008 when I was reinfected and then a more quicker progression started with falling, dizziness, fatigue, myoclonic jerks, twitches, word finding problems, tons of cognitive problems, back and joint pain, weakness, numbness, foot drop, and now...

dirty emg with patchy denervation..brisk reflexes, drooling, tongue biting, clicking and popping of joints, and worse cognitive dysfunction..I forget peoples names constantly. But I have not gotten a break AT ALL..in progression.

I'd have to imagine the possibility that something else could be going on with Tom if he has pretty good function after 10 years however if his test come back negative for lyme and syphilis then it is very doubtful but many Lymies would argue that with me.

But I will tell ya a month of oral antibiotics are not going to touch a thing, they just made my tongue burn..the rocephin is what helps me and it doesn't make me feel bad like orals. I actually do have Lyme's verified by one of the leading infectious disease doctors and top ALS doctor in the United States and if orals didn't help me with a flaming case then they def wont help someone that is advanced into ALS.

If you have any questions, dont hesitate to ask.

Kelly
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Old 05-19-2010, 06:16 AM #22 (permalink)
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Default Re: Lyme Testing?

Hey Kelly, do you have any skin affliction? Tom has a rash that has been fairly constant in his arms and legs over the years, but now is all over his back. He is dizzy most of the time and that seems to be getting worse too. He is bulbar now which means that eating is more difficult, speech has noticeably declined, even over this weekend. When he breathes at night it is more like panting.

While he was a miserable snot before he got sick even that characteristic has grown tenfold. I have been suspecting FrontoTemporalDimensia to explain it (easier than buying into his aactually hating the kids and I).
You mentioned "they def wont help someone that is advanced into ALS" I know that Lyme mimics many other diseases and as such is very easy to mis-diagnose, but is it also capable of causing the body to develop other disease?
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Old 05-19-2010, 12:10 PM #23 (permalink)
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Default Re: Lyme Testing?

It is of my opinion that yes Lyme can cause other diseases. I am currently at Mary Free Bed Clinic in Michigan for testing and being a lab rat for my doctors right now. I have had the opportunity to talk with many of the research physicians at the hospital while getting my tests run. I had an amazing discussion on this very topic with my ALS specialist who is one of the leading neurodiagnostic research neurologist in the country.

I asked her point blank her opinion on the possibility of Lyme's causing ALS and her deduction on the probability that the success of her patients participating in the Rocephin trial would be a direct result of the possibility these patients had an underlying microplasma infection to include or not include Lyme's Borreliosis rather than the ability of Rocephin to act as a glutamate blocker which is in the text of the trial.

Her answer was so honest...She said, "I have actually begun to wonder that myself." She smiled brightly at me and we conjectured about this back and forth during my entire EMG. She also commented at the finding of my abnormal EMG at the end that if Lyme's could do this to me then it is very possible it could happen to others. She said she would do more research then get back to me on my question.


Other research physician I spoke to were open to hear my ideas, hypothesis, and research but were skeptical until my EMG came back and then I was swarmed by doctors, nurses, techs, and infectious diseases, pathologist...ready to talk about my case while I was getting my port put in. I now know that all of Mary Free Bed has probably seen my records lol..and my nickname is Alabama..they are all so sweet and check on me daily now that i'm on rocephin.

Sorry for the long post..I just loved those peeps..but all in all Lyme's is a great imitator. Along with my neuro problems, I have heart problems that were referred in terms of vasculitis. I will add though that just as ALS is rare so is tertiary Lyme's disease. Most people who enjoy outdoor activities and are bitten by ticks carry BB antibodies but don't necessarily have Lyme's Disease.
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Old 05-19-2010, 06:15 PM #24 (permalink)
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Default Re: Lyme Testing?

That's a mouthfull.
I remember one of our support group meetings and the interesting line the conversation was taking by the PALS. The question was "What triggered ALS for you?" All of them had some trauma just prior to the onset, one fellow stepped out of his transport truck too hard and injured his knee. Then he got ALS. Another was in a car accident and recovered from that and got ALS. Tom had his appendix out, and then got ALS. Since all of them made the connection to a trauma and the disease then why not having Lyme to trigger ALS? Keep this with you when you talk with your physicians, maybe someone will launch a study.
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Old 05-19-2010, 07:11 PM #25 (permalink)
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Default Re: Lyme Testing?

Lets hope they do...I may not have ALS but its pretty dang close. I hope that I can recover fully under their observation and hopefully they will be inspired to continue a study. They have me on the Rocephin but today after the 4th dose..I had some type of asthma attack now I have to report back to Free Bed Infectious Disease Unit. I hope i will be able to continue the Rocephin. I believe the antibiotics have caused me progress faster honestly but I hope I can hang in there to prove that Lyme's does cause ALS.

love,
Kelly
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Old 05-20-2010, 06:32 PM #26 (permalink)
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Default Re: Lyme Testing?

Oh, Kelly don't take this wrong but I hope for no such thing. I mean, I wouldn't wish ALS on anyone ever. Tom is being booked in for IGENIX. Is that the western block or should I have him ask for that?
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Old 05-20-2010, 06:50 PM #27 (permalink)
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Default Re: Lyme Testing?

Tom's Support-- responding, just in case Kelly does not see this. The test is the Western Blot. it is usually only conducted after a positive or indeterminate ELISA test for Lyme Disease. I have read claims about the ELISA test being falsely negative and I asked two neurologists about this at two well regarded hospitals-- one a teaching hospital for Harvard Medical School (Mass General Hospital in Boston, Mass.) and the other at a teaching hospital for Tufts Medical School, and they both refuted that claim. they said if someone was having neurological symptoms (such as twitching, muscle weakness, balance problems, etc) from Lyme Disease that it would definitely show positive on the ELISA test. I know this is a hotly debated topic, but I am just putting this out there, for what it's worth.

Good luck to your husband-

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Old 05-20-2010, 06:54 PM #28 (permalink)
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Default Re: Lyme Testing?

one other thing: the Western Blot is a more sensitive test. not sure why they don't just use it at the outset, probably it is a more expensive test than the ELISA.
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Old 05-20-2010, 10:04 PM #29 (permalink)
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Default Re: Lyme Testing?

Hey you guys,

SandraD is right in all the information she gave you. Your doctor will run an Elisa test first and if that is positive then the lab will automatically run the Western Blot on the sample. The WB is very specific. If a person has Lyme's disease it will catch it. Alot of people are exposed to BB the buggy that causes Lyme's but never develop the disease. I also have to agree with Sandra on the fact that my ALS doctor and my Infectious Disease doctor that if a person truly has Lyme's Disease that is severe enough to cause neurological damage the WB will show an IgM response which is indicative of a new/current infection.

I would double positive which means my test was run a total of 4 times from LabCorp and once from Quest Labs. All four tests were IgM positive. If I were you I would run a dual testing meaning run the Lyme's titer from a standard lab and one from Igenex. Almost all of Igenex tests come back positive bc as I said before most people have been exposed to BB.

Please let us know what your test findings are. I can tell you in a time reference..a Lyme Titer takes 5 days on average to run. All of my tests took 10 because of the Western Blot was having to be run after I popped positive. So be patient..its a lengthy but sensitive test.

Oh and I def didn't mean to sound as if I wanted ALS...gracious no...I wanna cure this disease..I meant to prove that Lyme's can mimic this disease and promote more research.

So much love,

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Old 05-21-2010, 11:11 AM #30 (permalink)
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Default Re: Lyme Testing?

Did the specialist say what it meant if you are IgM positive and IgG negative. I've had symptoms for months, but the only positive IgG band on my WB was 41 kD? My IgM was positive though.
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