Hi there, I was wondering if there are any of you out there that have been diagnosed with MS, but later found out that you really have Lymes? I have read there are many similarities even lesions and blood tests?
Can any of you help me with this? I have a friend that is really sick and needs answers. I am trying to do all I can for him and his family.
I was never diagnosed with MS. However, I did have brain lesions on MRI that were thought to be consistent with MS.
There is no blood test for MS. There are blood tests for Lyme disease. However, doctors argue over how much weight to give the Lyme tests and also how to interpret them. The strict IDSA definitions require several "bands" to appear on the Lyme western blot, while other more Lyme-friendly docs know that ANY bands is sign.
Both Lyme and MS can be diagnosed clinically, based on symptoms and not just tests. However, owing to advances in MRI imaging, more and more doctors depend on the MRI in diagnosing MS. Likewise, even through their are suspicions about the Lyme blood tests, some doctors still rely on them solely.
Lyme doesn't always cause brain lesions. There are different strains of Lyme, and also different "co-infections," which ticks also carry and transmit. Furthermore, Lyme is systemic, meaning that it can enter the nervous system but it doesn't have to in all cases, esp. if it is caught early.
While the prognosis for MS is more dismal than for Lyme, Lyme disease can actually cause MORE symptoms than MS can, because MS is a disease of the central nervous system. Therefore, if someone with MS-like neurological symptoms also presents with arthritic pain, that is something of a "red flag" to consider Lyme disease, even if testing has apparently ruled it out.
At my worst, I was not as sick as some but I was in really tough shape, and I could not get a definitive diagnosis. I was told to "wait and see," meaning to repeat my MRI's on 6 month intervals. All the neurologists I saw staunchly denied that I could have Lyme disease. I eventually saw a rheumatologist who quickly jumped to the conclusion that I was "coming down" with lupus, RA, or both. But the blood tests for those came back negative, and I was again told "wait and see."
Ultimately, after reading and hearing thoughts about Lyme disease, I felt that I had to at least *try* Lyme treatment to see if it had any effect on my health. In order to do so, I had to find a so-called "Lyme literate" MD, someone who would think outside of the standard testing guidelines and treatment options. This was an "off the beaten path" move, as well as an out-of-pocket expense.
The chance I took on an LLMD paid off, and I've improved tremendously. I went from only being able to be out of bed for a couple hours a day, in a near-constant state of profound confusion, with tons of symptoms affecting my nerves, eyes, ears, joints, and even my heart, to again being a productive member of society, working full time and living my life. I'm still treating, Dec. will be my 2-year mark since starting. I'm not cured and still struggle, but I've gotten back my life and optimism.
I hope your friend is able to find help. Personally, I think anyone with a possible MS diagnosis should at least consider that Lyme is contributing, even if their Lyme tests are negative. Afte rall, Lyme is treatable (though not always easily) while with MS the best medicine can do as of now is try to delay disease progression.
To Wonko: When I was in the hospital they told me I had MS then did a blood test and told me I did not have it. I was told there is a test for MS of course im not a doc so not sure. I am almost certain they tested me with a blood test though.
To Fuel1212: Hang in there, those lesions might be the disease, they like to hide in the brain, heart, joints, nervous system. Do you have migrains too? I hope you can get better.
I am actually trying to find out some information for a friend.
I have read that spinal fluid antibodies can look the same from ms to lymes. My friend has had a spinal and multiple mri's. The treatment is not doing anything after 7 months. I just want to make sure for him and his family he is going down the right path.
I haven't done much reading on the question you raise, but to my understanding, spinal fluid is not a reliable indicator of Lyme infection ... the Lyme bacteria are not always found there, including in someone who actually has Lyme. Therefore Lyme specialists (LLMDs) do not rely on spinal taps as diagnostic of Lyme.
Lyme hits some people in the body but not the brain so much, so it maybe that your friend has not had the Lyme spread to the nervous system, at least yet. MDs who do not take a progressive view of Lyme are looking for other diseases and conditions on which to hang the symptoms reported, and since they don't 'believe' in Lyme except as something hard to get and easy to cure, they ofte aren't doing a differential diagnosis that includes Lyme vs other diseases.
My LLMD never did a spinal tap, and didn't use an MRI, because neither of those tests is sufficiently specific to Lyme that they can rule it out. There is another brain scan called a SPECT scan that is sometimes used in suspected Lyme, which shows blood flow through the brain, which can be restricted in Lyme.
The main organization for LLMDs is ILADS [dot] org. At their website, under the tab 'About Lyme', the third item are 'Diagnostic Hints ...' by Joseph Burrascano MD. This is written for MDs, but is understandable to those like me who aren't medically trained. Here is a quote from there, regarding spinal taps in Lyme:
"Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb [Borrelia burgdorferi, the bacteria that cause Lyme] are mostly found in Lyme meningitis [when the patient has more neurological symptoms rather than muscular and skeletal symptoms], and are rarely seen in non-meningitic CNS [central nervous system] infection, including advanced encephalopathy. Even in meningitis, antibodies [to Lyme] are detected in the CSF in less than 13% of patients with late disease! Therefore, spinal taps are only performed on patients with pronounced neurological manifestations in whom the diagnosis is uncertain, if they are seronegative [meaning their blood tests don't show positive for Lyme], or are still significantly symptomatic after completion of treatment. When done, the goal is to rule out other conditions, and to determine if Bb (and Bartonella) antigens or nucleic acids are present...."
The money quote from the above is: "Even in meningitis, antibodies [to Lyme] are detected in the CSF in less than 13% of patients with late disease!" That is, even in the most brain-and-nervous-symptom-affected cases of Lyme, only 13% of patients have indication in their spinal fluid that they have Lyme. Therefore relying on a spinal tap to say 'no you don't have Lyme' is not logical or helpful. A spinal tap misses 87% of Lyme cases (100-13=87%).
I would suggest strongly that your friend see an LLMD, which is not an official designation, but is slang for an MD who takes a broader view of diagnosing and treating Lyme. I personally went through about 20 highly trained MDs, including a neurologist, a bunch of internists, several endocrinologists, two ER docs, a couple of infectious disease docs, and none of them diagnosed Lyme: in fact, several of them told me it couldn't be Lyme ... in the immortal words of one of them: "Oh, you couldn't possibly have Lyme. I have patients with Lyme, and they ... are ... all ... near ... death."
And why might that be? Because they hadn't been TREATED!
Not everyone with untreated Lyme dies, but life can be extremely difficult. Your friend is lucky to have you helping. Best wishes to you both --
I know of and have read of very few cases in which a person with Lyme tested positive for it through spinal fluid collected during an LP.
I had an LP, largely to rule out MS, and also requested that the fluid be tested for Lyme (as I had my suspicions by then). The tests were negative, for O-bands and proteins consistent with MS and for Lyme disease antibodies.
I've read that 5% (or 1 in 20) with MS will have a normal LP. That and the above post from JackieCalifornia about how lousy CSF testing is for Lyme, and I wonder why so many doctors used this highly invasive procedure for testing! Mine was complication-free, I didn't even get the dreaded headache, but for others it can be a real ordeal to get an LP. Sigh, when will they learn?
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