Do you believe that MS exists or that all MS is really misdiagnosed Lyme?
Just curious what the opinion is around here because I was just reading an article in which the author claimed that all cases of MS are really Lyme Disease. I've seen people on the internet claim that MS, ALS, fibromyalgia, and other conditions are all Lyme as well.
When I went to have my MRI done this past Wednesday, I got really claustrophobic in the tube and told the technician to take me out NOW. So she called my neuro and asked if a CT scan would be sufficient instead, and he told her no because he wouldn't be able to tell if I had MS on a CT scan. He never told me he suspected I had MS, although I'm not really surprised.
Anyway, I'm still waiting on my IGeneX results. I'm hoping I'll be able to actually see them because the only doctor I could find willing to authorize the test for me is a complete sketchball. His online reviews are atrocious, and I cans see why because he was the opposite of professional and very rude to me. Here are some things people have had to say about him online so you can see why I'm concerned that he might not let me have a copy of my results:
" For lab work to get a thyroid prescription refilled by him, he tried to upsale me beyond our original agreement, and then refused to give me the lab results and called the Tybee Police to have me thrown out of his office. Needless to say there will be a law suit. Tybee Urgent care is really a Medical 7/11. DON'T GO THERE! "
" What a joke. This quack doctor can’t take insurance because of insurance fraud claims against him in other states. He demanded that I purchase my medicines from his office before I could leave thus I was not able to use my insuranace card. I felt like he wanted to keep everything in the confines of his office walls–including mistakes and subpar services. His practice won’t hold up under investigations. By publishing this article is he trying to take the focus off himself?"
"He is very un-professional. I can not believe he is still in New Mexico. He can not even practice at UNM anymore. Double charged my insurance company and charged for services he can not perform! STAY AWAY!!!!!!!!!!!"
"He is still up to his same old trick just a new city. Savannah Ga. Tybee Island. This guy is crazy. This guy needs to be locked up! "
So yeah, I don't plan to go back to him because 1) He's not a Lyme doctor anyway, so he doesn't know anything about reading my results and 2) He doesn't deserve anymore of my money after how he spoke to me. I plan to just ask them to print up a copy of my results and let me come pick them up, but I wouldn't be surprised if he starts a fight based on experiences people have had with him in the past.
I read the same thing about everything being Lyme . It kind of makes sense since I have been misdiagnosed with many illnesses through the years.
In the NY times earlier this year, there was an article about finding a frozen caveman and after testing him they discovered him to have Lyme Disease. If Lyme has been around all of these years, it could very well be the root of everything.
Yeah, I've heard stories of people misdiagnosed through IGeneX and have also read claims that as many as 98% of people who test through them are told they're Lyme positive. So I do wonder just how confident I can be in the diagnosis in the event that my results come back positive. I'm not saying I definitely believe that IGeneX is full of it by any means; it's just so hard to know what to believe when you're getting conflicting opinions from all over the place. I don't want a positive test to put the idea in my neuro's head that we have our answer and can stop looking into alternatives if I for whatever reason test positive but don't actually have Lyme. So many complications.
I have not heard of false positive results from IGeneX. There are a fair number of incorrect test results from other labs, but the reason, so I understand, is that the nature of the tests are different:
-- The standard Western blot and ELISA tests look for the immune system's reaction to an infection. That mean it is *indirect* evidence, not direct evidence of infection. The test results are affected by how well your immune system functions, how long you have been infected (because after a while, the immune system figures the infection is dead and stops reacting, therefore the tests show nothing), and how the test results are reported (different labs report different ways, some more narrowly than others).
-- The IGeneX test does not look for the immune system's reaction, which as mentioned above, is prone to false negative results, meaning you are infected, but the test says you are not. The IGeneX test looks for *direct* evidence of infection, meaning it looks for the DNA of the Lyme bacteria in your blood.
I think of this difference as being like looking for evidence of a burglar you think was in your house:
-- *Indirect* evidence (like the ELISA and Western blot tests) is like looking for footprints in the flower bed outside the window of your house where you think the burglar left from ... the only problem being that the burglar maybe jumped over the flower bed, or stepped only on rocks, or it rained and wiped out the footprints. Not very reliable to determine whether there was a burglar in your house.
-- *Direct* evidence (like the IGeneX test) is seeing the burglar with your own eyes, and either the burglar's there or he's not. No relying on iffy footprints.
NonLLMDs believe that the Western blot/ELISA tests are fine, but they are in fact old school, yet many docs still rely on them. The diagnosis and treatment of Lyme is infested with politics, and this is the result.
I don't know where you heard that 98% of the people tested at IGeneX come back positive, and I don't know where that number would have come from. Maybe whoever said that meant that IGeneX testing is 98% ACCURATE; just guessing.
IGeneX has a nice website and you could go there to read about their test methodology and results.
I asked you to please not reply to my posts any longer back when you directed a very rude, insensitive comment at me. You stopped for a while but have since continued to do so. You can continue to respond as you like, of course; just know that I will continue to ignore your posts to me as I stated I would do, and you are largely wasting your time. Thank you.
I do not believe that all MS is Lyme. There are just too many people out there with MS who haven't been exposed to Lyme for that to be true. I do think that MS is probably triggered by a faulty immune reaction to an as-yet-unknown neurological infection. I think it is possible that for some people, Lyme leads to MS.
I do believe more people than we can possibly guess are misdiagnosed with MS when they really have Lyme.
The stories about how most everyone who gets tested at IGeneX is positive is just anti-Lyme propaganda from those who can't explain how IGeneX finds more cases than other labs. The people spreading these rumors don't want to admit how mediocre the "standard" tests are. There was even a controversial incident in Canada where a senior health official said to a reporter that IGeneX will give a positive result to any Canadian for a fee. The outcry from Lyme patients was loud. Instead of apologizing, the guy said he still believed what he said, but he just couldn't prove it. (Canadians generally have to come to the US for treatment as the Canadian Health system is in massive denial about Lyme.)
You can read more about how IGeneX's testing is more advanced on their website. IGeneX has to pass all the same requirements and audits required of other labs, as well as additional requirements by certain states. They would not be allowed to operate if they were a scam.
There are some people who can test "positive" on a western blot and not have Lyme. The CDC criteria wants 5 out of 10 IgG bands. But 5 of the ten are not Lyme specific. If you have those 5, your result will be reported as positive. (But if you show only 4 of the Lyme specific bands at other labs you'll be told it's negative and therefore do not have Lyme. Shows you how idiotic it is to use the CDC surveillance criteria as a diagnostic absolute!)
Also, some people are believed to get Lyme and their immune systems hold it in check. Those folks aren't sick, but can also test positive. They could become sick later if their immune system gets suppressed. It is also possible there are some low virility strains out there that only cause a bulls eye rash, and that's it. ("Cure Unknown" mentions a study done of hundreds of known strains of Borrelia Burgdorferi. A small number of them only caused a rash in mice, which usually get quite sick from Lyme.) I know a couple who have both had tick bites and bulls eye rashes years ago, and never got sick. (Although the wife now has primary progressive MS.... Go figure!)
While MS can cause cognitive issues, you might consider doing some research on the specifics. I get the impression that Lyme cognitive issues due to encephalopathy can be worse.
I can't remember if I've mentioned googling "Lyme misdiagnosed as MS." Sorry if I am repeating myself! There are a number of articles that compare and contrast them.
It is always possible for someone to have both Lyme and MS. If that's the case, you'll want to treat the Lyme completely first. MS treatments make Lyme patients worse.
Lyme spirochetes can penetrate into the myelin sheath of nerves and cause problems like numbness, intense pain, pins and needles etc which result from the inflamamation. They CANNOT strip it away.
In people with MS, the myelin sheath is stripped off the nerve so they can become completely paralysed. This never happens to Lyme patiens.
Therefore MS is definitely NOT lyme disease. However, a significant number of people with lyme disease are misdiagnosed with MS for a while before they find out what they really have. It can be very hard to tell the difference between mild/early/partly in remission MS, and lyme disease.
If you are positive with IgeneX, ,believe in them. I have never heard of a false positive with them.
Dr Schaller, who has written many books, believes that Lyme is the co-infection of Bart's, Babs etc. I think he said he thinks everyone has hidden Babs if they have a tick borne illness.
It is all interesting things to think about.
Keep us posted!
MS wouldn't necessarily be Lyme. Then are lots of other micro-vermin that can either come along through the tick bite, or get in because of the immunosuppression caused by Lyme, and some other infections. Toxoplasma is an example. It infects the central nervous system. Sometimes the stripping away of the mylein sheath is done by one's immune system. It has detected internally infected cells and is removing them. Could be Lyme, could be toxo, could be some other intracellular parasites, but I am of the opinion that it is NOT autoimmune as many believe
Lots of interesting new info in these responses that I did not previously know. Thanks, all! I didn't know that Lyme patients don't present with stripped off myelin sheath. Weird how so many Lyme patients are diagnosed with MS, then. Hm!
How crazy about the Canada story!
Well, if IGeneX diagnoses 98% of people as Lyme positive, I'm not one of them. Got my results back, and I'm negative. :)
Hey I always test negative but have had symptoms for some time now. Antibiotics seem to help but never really kick it. Be careful of the herbs Artemisinin can really have some side effects. If you try vitamins methylcobalamin seemed better than just B vit for me. For pain naproxen (more than the bottle says) tramadel and caffeine can help. When I am on antibiotics they seem to help a lot with pain. did anyone else notice tics is part of antibiotics?
If you tested negative for lyme but have symptoms, you should look into the other tick borne illnesses that have overlapping symptoms. Bartonella is a lot like lyme and you can get that without lyme. There is also babesia, I don't know much about that except it also has many symptoms in common with lyme.
Artemisia will have dangerous effects if you take it without antibiotics. You need either prescription abx or a herbal antibacterial programme from a herbalist who knows aboput lyme.
Abx helped me with pain because they were killing off the borellia that caused inflammation, but it took a while.
A significant response to Artimisinin might also indicate Babesia. It is possible that you couldn't kick Lyme with abx because the Babesia was interfering with the abx. In most cases, abx will eventually kick Lyme. Have you been to an LLMD yet?
Taking more naproxen than is recommended can be dangerous for your liver. As Lyme can also stress out the liver, it becomes especially important not to take meds that can stress it further.
Also, caffeine is not recommended with Lyme. It can elevate the heart rate and stimulates the adrenals to produce more cortisol. Since Lyme often causes tachycardia and affects the adrenal glands, caffeine can make them worse.
You might try some detoxing solutions for pain instead, such as Epsom salt baths, chlorella, activated charcoal, a heating pad or a hot pack. And drink lots of water (nothing carbonated or sugary).
I had a few tics, but I always assumed they were Lyme symptoms rather than abx side effects. I had a lot of twitching, which was greatly reduced by good magnesium supplements.
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