Lymedin2010
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posted
So I was reviewing with a MS patient the difference between MS & Lyme. They are inclined to believe when you have Lyme that you have to have joint pain.
1) For all of you that had been diagnosed with MS at first & ended up learning afterwards it was Lyme. How many had joint pain?
2) How many who were diagnosed with MS tested positive for Lyme & co-infections?
I have met & seen dozens of people without any joint pain & with Lyme. Personally it took me about 16 years to get the joint pain.
Posts: 2087 | From NY | Registered: Oct 2011
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Keebler
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- It does not matter how many who were previously diagnosed with MS, later to be dx with Lyme had joint pain or not. If ONE person has had this experience, it shows it's possible for others. Although, there have been many.
Still, lyme can be with or without joint pain. There is no set of symptoms that has to have any certain boxes checked. Especially with neuroborreliosis. All bets are off. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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Many links / professional articles here about the Lyme-MS connection -
Also detail about other tick-borne infections, other stealth infections (such as Cpn) that can cause "MS" as well as environmental causes & complexities. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
There is one absolute way to distinguish between lyme and MS,,, true MS that is... and thats to look at the blood under dark field microscopy. If it is Lyme the spirochetes and cysts will be there.
MS is a basket diagnosis simply meaning MISSING SOMETHING... There will always be some microbe involved. I have a friend who has "ms" and her father has it too. They keep it in check with a Himalayan herbal formula. She says their very lives depend on taking this stuff or they land in the hospital. It never fails them. She showed it to me and I looked up all the herbs in it, all oriental herbs. 95 percent of the herbs were known for strong antimicrobial action.
Posts: 803 | From USA | Registered: Oct 2013
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posted
I did not have joint pain when I was misdiagnosed with MS. It was all neurological with just a bit of migrating pain that wasn't in the joints.
I didn't get any real pain until after being bit 12x's by some unknown insect (I never felt the bites).
I did not test positive, but showed bands. However, I did have the bull's eye yrs. earlier.
-------------------- j_liz Posts: 471 | From NJ | Registered: May 2009
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Keebler
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posted
- Dark Field Microscopy can be a good help but it can fail to detect lyme. It may be able to be seen but it may not. Not a sure bet at all. Much depends on the exact equipment & practitioner expertise -- but even under the best circumstances it can miss it. Lyme does not always "hang out" in the blood. In that small drop under the microscope, that sample bit just might not have captured it.
It failed in my case, even with repeated dark field tests. An Igenix Western Blot IgM showed the truth (but that was a lucky break as it's not always that clear.)
Dark Field did show clumping of red blood cells and that helped in other regards. It can be useful in other ways. No single test for lyme is the end-all, be all. They can all miss. So be sure that an ILADS educated LL doctor is able to fully assess for all tick-borne and stealth infections. It's a clinical diagnosis.
When tests can find it, great. Huge help. But an experienced expert's wisdom is key. -
[ 12-12-2013, 03:34 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I also have an MS diagnosis. I used to think that because I didn't have joint pain, and that during flares, steroids made me feel better, that it couldn't be lyme.
Now I know I have lyme and babesia(igenex), that brain lesions, multiple neurolgical problems, and optical neuritis can be caused by lyme.
And that while steroids may help in the short-term, they can cause more problems later and best to avoid them if possible.
[ 12-12-2013, 05:44 PM: Message edited by: dogmom2 ]
Posts: 857 | From northern california | Registered: Dec 2009
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lpkayak
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"There is one absolute way to distinguish between lyme and MS,,, true MS that is... and thats to look at the blood under dark field microscopy. If it is Lyme the spirochetes and cysts will be there."
carmen-i dont understand why you say this. it is well known and documented now that ketes dont like the blood. they are happier in connective tissue and eyes...places that are firmer so they can move easier
also...i agree with those saying joint pain is not necessary for Bb or lyme dx. i think that is leftover from the beginning. it is well known now that lyme can affect every system---many only have neuro-no muscle/joint problems at all.
but i totally agree a good def of MS is "missing something"
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Lymedin2010
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posted
Thanks for the FB. This girl on here sounds so much like Lyme, that it just screams at you.
I have all her symptoms, less the heavy tongue thing she describes.
Keebler, how long ago did you check your blood? When I first got sick, I had so many symptoms and I could not detect anything in my blood. With ABX usage it slowly built up & I could finally see things in my blood.
You have to let the blood sit for a while & allow for conditions to make the spirochetes come out of the red blood cells.
Why would it not make perfect sense for spirochetes to be in the blood. That is their mode of transmission. They need to be sucked up by a tick readily, off such a large mammalian body. It makes perfect sense that they are abundantly available in the blood.
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Keebler
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posted
- Blood vessels are not the mode of transmission for spirochetes.
They can spring anywhere in the body through blood vessel walls, deep into tissue, even into bones. They like to go deeper and generally do not hang around in the blood highway or even spinal fluid pathways. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
MS and Lyme difference - good doctors and patient's open mind.
Before crushing under neuro symptoms in September 2008 I was developing many MS symptoms for almost a year. I was aware of symptoms but ignored them until I crushed not able to walk.
I was blessed my PCP tested me for Lyme disease and the test came back positive trough Qwest.
Seven days after first test, infectious disease doctor did the second test that came back negative. And this doctor suggested that I need to look for other possible diagnosis.
I found good LLMD but I also found a good neurologist who is MS specialist with interest in connections between infectious and neurological diseases. I played both cards and both doctors were open minded.
During first two and half years of aggressive abx treatment I had developed many more new neurological symptoms that could give me ALS or Parkinsons diagnosis ( if neurologist did not know that I was going trough abx treatment-I had a felling he was waiting to see how the treatment would progress).
Neurologist was initially shooting for MS diagnosis, after a year and a half he downgraded it to lyme encephalopathy and for this past year is POTS and migraines.
Joint pain and fibromyalgia developed in second year of the treatment- so no straight answer.
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Lymedin2010
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Funny, that I too developed joint pain about a year into treatment, which got worst by year 2. I also developed true fibromyalgia after 2nd year of treatment.
The MS symptoms were completely gone when initially treating for Lyme, but I also did not have any brain lesions. I have heard of others having brain lesions before treatment & ABX clearing up the lesions.
Posts: 2087 | From NY | Registered: Oct 2011
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posted
Antibiotics can cause overgrowth,resistance or mutation of other micro-organisms and thats perhaps why you developed fibromyalgia into the second year of treatment.
Also, I have this whole paper in my files but I have no way to attach it here.
LYME BORRELIOSIS AND MULTIPLE SCLEROSIS: ANY CONNECTION?
A SEROEPIDEMIC STUDY
Jolanta Chmielewska-Badora, Ewa Cisak, Jacek Dutkiewicz
Department of Occupational Biohazards, Institute of Agricultural Medicine, Lublin, Poland
Chmielewska-Badora J, Cisak E, Dutkiewicz J: Lyme borreliosis and multiple sclerosis: any connection? A seroepidemic study. Ann Agric Environ Med 2000, 7, 141–143. Abstract: A total of 769 adult neurological patients hospitalised in clinics and hospitals situated in the Lublin region (eastern Poland) were examined during the years 1997- 2000 with ELISA test for the presence of anti-Borrelia burgdorferi sensu lato antibodies. A statististically significant (p = 0.0422) relationship was found between the clinically confirmed diagnosis of multiple sclerosis and the positive serologic reaction with Borrelia antigen. Ten out 26 patients with multiple sclerosis (38.5%) showed positive serologic reaction to Borrelia, whereas among the total number of examined neurological patients the frequency of positive findings was twice as low (19.4%). The result suggests that multiple sclerosis may be often associated with Borrelia infection. Address for correspondence: Jolanta Chmielewska-Badora, MS, Department of Occupational Biohazards, Institute of Agricultural Medicine, Jaczewskiego 2, 20-090 Lublin, Poland.
Posts: 803 | From USA | Registered: Oct 2013
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posted
First post from me. Forgive me if this question has been previously addressed. I was unsuccessful in locating any topic on this.
QUESTION: Multiple sclerosis displays protein bands in the spinal fluid when a lumbar puncture is performed. Can Lyme produce this result as well?
-------------------- . Posts: 10 | From nyc | Registered: Jun 2014
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LisaK
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posted
with all the symptoms I had/have, including light flashes and visual disturbances, not one of the 40+ drs I have seen when undiagnosed ever suggested MS.
I wonder why actually!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
One of the many times I went to a neurologist, did some testing for ms ,went back to the neurologist again and wanted me to sign some papers to take away drivers license ,
I looked at her like she was nuts told her you have no clue as to what was going on and left office immediately , my body was telling me it's something else.
Few years later that's when I found out the truth about lyme and LLMD .
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TF
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posted
Here are some results from a quick Internet search I did on the subject:
"If any of the initial tests are abnormal or if the doctor has reason to suspect a specific condition, then additional testing may be ordered. This may include one or more of the following:
CSF protein electrophoresis — separates different types of protein. Oligoclonal bands may be seen with multiple sclerosis and Lyme disease."
" Lyme disease can cause a phenotype very similar to MS. The more common acute picture of meningism (or meningoencephalitis), facial palsy, and/or painful radiculopathy presents few problems. However, in so-called tertiary Lyme disease, progressive syndromes including spastic paraparesis, cerebellar ataxia, and recurrent cranial neuropathies can cause diagnostic confusion. MRI may show multifocal white matter lesions, and the CSF can contain oligoclonal bands though the cell count is usually persistently high."
"Results are given in milligrams per deciliter (mg/dL). The normal range for CSF protein in adults is 15 to 45 mg/dL.
If your levels are higher, it may mean that you have a medical problem. Along with MS, conditions that may cause oligoclonal bands of immunoglobulins in the CSF include meningitis, Lyme disease of the central nervous system, autoimmune diseases, and brain tumors."
Hope this is what you are asking about, nicoleny.
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Keebler
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posted
- (I know you are asking for someone else . . . just using the proverbial "you" here for ease of writing.)
Still, unless you have already had a lumbar puncture (spinal tap), it is best to avoid such a test as it's not usually helpful and waste of time, money and (sometimes) pain for up to a couple weeks afterward -- all for a test that is just not that helpful.
Even if a Lumbar puncture would suggest a diagnosis MS, you'd still have to identify and deal with the underlying cause(s). You already KNOW what's going on, symptom wise. Trust that information, too.
Best to find an ILADS educated LLMD to guide diagnostics. If they think you require further testing for neurological reasons, they will also know the best experts to refer. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thank you all for the responses. I was asking for myself. Battling many severe symptoms. ms diagnosed but not responding to any treatments. Planning Igenex testing and LLMD appointment. I just need to know if Lyme may be a part of this.
-------------------- . Posts: 10 | From nyc | Registered: Jun 2014
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Phoiph
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posted
Interesting link comparing MRI imaging of white matter brain lesions having different etiologies, including MS and Lyme:
Marnie
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posted
MS looks to be caused by a *retroviral protein* called HERV-W.
The "W" stands for tryptophan.
Both MS and lyme -> "autoimmune", IMO.
In several diseases....HIV, MS, Lyme, the infections trigger a pathway called the Kynurenine pathway of tryptophan metabolism.
A "balance" is thrown off.
Glycox (berberine chloride) looks to work upstream of Minocycline, but both could indeed help! Chose. Dosage and timing for both are very important.
Google: MS berberine
Another POSSIBILITY is trying a new "coenzyme" called PQQ.
Research it in depth and figure out HOW it works.
We know for fact there is "mitochondrial dysfunction" in the cells. They need help.
Mitochondria are the powerhouses of our cells. As we age, there are fewer and fewer mitochondria despite the fact that we always are producing stem cells. Those stem cells need lots of - and healthy - mitochondria so they can do their jobs as they progress to develop into many kinds of cells.
It appears stem cells take a "bystander hit" from other cells releasing inflammatory cytokines.
Taming down inflammation is a big part of being able to clear the infection and heal.
Yes, Keebler...I know the location of Bb in the Iceman.
But...
Berberine induces apoptosis in human multiple myeloma cell line U266 through hypomethylation of p53 promoter.
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Keebler...look at the last link and the one above it.
"Gaito, who is president of the International Lyme and Associated Diseases Society, said the NIH study did not treat people long enough to make a difference.
She is now studying the cervical tissue of women with Lyme disease.
She also noticed that three of her patients developed multiple myeloma, a serious cancer, and she is now exploring links between the two diseases."
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