Aa
Introduction and Advice
First time posting here, but I have been diagnosed with MS in Dec 2012, and tested positive for Lyme through Igenex September 2013. Up until then, I had several LabCorp WBs that kept showing bands 23/41 as present, but of course I was negative to the CDC.
I had several lesions on brain and both spines, complete sensory numbness from the chest down including hands, so I am a classic MS patient. As of now, I refused MS drugs and am taking LDN at 4.5mg and several supplements like NAC and ALA. I do not plan on taking MS drugs like Copaxone anytime soon, but after my most recent relapse, it's making me think.
On my very first MRI I had "numerous" lesions. The second MRI 6 months later I only had 9 new lesions. It has been a year since any drastic symptom, but last week I told I have Retrobulbar Optic Neuritis. So I assume I have a lesion to correspond this new symptom. Has anyone here had RON on ON diagnosed by an eye doctor?
Any thoughts on my choices of treating Lyme over MS is appreciated, especially if anyone has been misdiagnosed like myself. I choose to treat Lyme because Lyme can be tested by dna whereas MS is only diagnosed by a series of tests. Also, I believe MS is caused by an "infection" such as Lyme, EBV, etc...
If interested, please read my blog for my exact story and history at www.learnlyme.com
I had several lesions on brain and both spines, complete sensory numbness from the chest down including hands, so I am a classic MS patient. As of now, I refused MS drugs and am taking LDN at 4.5mg and several supplements like NAC and ALA. I do not plan on taking MS drugs like Copaxone anytime soon, but after my most recent relapse, it's making me think.
On my very first MRI I had "numerous" lesions. The second MRI 6 months later I only had 9 new lesions. It has been a year since any drastic symptom, but last week I told I have Retrobulbar Optic Neuritis. So I assume I have a lesion to correspond this new symptom. Has anyone here had RON on ON diagnosed by an eye doctor?
Any thoughts on my choices of treating Lyme over MS is appreciated, especially if anyone has been misdiagnosed like myself. I choose to treat Lyme because Lyme can be tested by dna whereas MS is only diagnosed by a series of tests. Also, I believe MS is caused by an "infection" such as Lyme, EBV, etc...
If interested, please read my blog for my exact story and history at www.learnlyme.com
I will read them, thanks! and thanks for the kind words. I had no tick bite, but I did have a perfectly round bald spot on my scalp that was not a cyst. it also had a black dot in the dead center it. Had no hair for 2 months, surgeon cuts it open and hair grows back within 3 weeks. weird!
That's funny about not wanting to count the lesions, I always thought the same. At what point do they give up counting and just say "numerous". That's why I think 9 new lesions isn't all that bad. So did you take any DMDs for MS?
I wonder if ON is caused by inflammation of the brain (my optic nerve is fine) and that will eventually turn into a lesion.
I have read about biotoxins and allergies being triggers or just another virus introduced into the body. I can tell you my child brought Coxsackie home from preschool and although I showed no symptoms of that, I had my first Lyme/MS symptom a month later.
I have an LLMD and was tested by Igenex which came back CDC positive with bands 23, 31, 34, 39, 41, 86. LLMD is very suggestive of BART as well so he is treating me for that.
Thank you for your thorough response. I am gonna try to find out how many lesions I actually had on my first MRI.
I wonder if ON is caused by inflammation of the brain (my optic nerve is fine) and that will eventually turn into a lesion.
I have read about biotoxins and allergies being triggers or just another virus introduced into the body. I can tell you my child brought Coxsackie home from preschool and although I showed no symptoms of that, I had my first Lyme/MS symptom a month later.
I have an LLMD and was tested by Igenex which came back CDC positive with bands 23, 31, 34, 39, 41, 86. LLMD is very suggestive of BART as well so he is treating me for that.
Thank you for your thorough response. I am gonna try to find out how many lesions I actually had on my first MRI.
My Lyme mimicked MS, although I didn't meet the diagnostic criteria. I had a lot of overlap of symptoms and even had about 20 of those little brain lesions. The radiologist didn't even bother to count them, instead, saying I had "numerous" lesions. (Guess they like that word.)
Many good LLMDs have commented that when they see a lot of neuro symptoms, look for Bartonella. Sure enough, I also have Bartonella. Bart is also a neuro infection, and coupled with Lyme, they seem to make each other worse, especially with neuro symptoms.
I have heard of others with Lyme who were diagnosed with ON. Just google both and you'll find the stories. There are plenty of people who really had Lyme who were misdiagnosed with MS. Unfortunately, those people got sicker on MS meds.
I am of the opinion that while there is a link between Lyme and MS, there are a lot of MS cases that clearly aren't Lyme. Those people get better on immune modulators, not worse, often show zero Lyme antibodies, and have no improvement on antibiotics.
There is a very recent study where some researchers think they may have found the (or 'a') trigger for MS. It's a biotoxin produced by certain strains of a common foodborne illness. The biotoxin destroys myelin, which is what happens in MS. MS could be a combination of this toxin along with an immune system that failed to clear the infection in a timely manner, if at all.
I encourage you to find a good LLMD and get tested at IGeneX. I have a theory that a lot of people with neuro Lyme test false negative on the standard CDC testing because that testing was developed on people with a bulls eye rash in New England. It has never been validated on established neuro Lyme cases.
Many good LLMDs have commented that when they see a lot of neuro symptoms, look for Bartonella. Sure enough, I also have Bartonella. Bart is also a neuro infection, and coupled with Lyme, they seem to make each other worse, especially with neuro symptoms.
I have heard of others with Lyme who were diagnosed with ON. Just google both and you'll find the stories. There are plenty of people who really had Lyme who were misdiagnosed with MS. Unfortunately, those people got sicker on MS meds.
I am of the opinion that while there is a link between Lyme and MS, there are a lot of MS cases that clearly aren't Lyme. Those people get better on immune modulators, not worse, often show zero Lyme antibodies, and have no improvement on antibiotics.
There is a very recent study where some researchers think they may have found the (or 'a') trigger for MS. It's a biotoxin produced by certain strains of a common foodborne illness. The biotoxin destroys myelin, which is what happens in MS. MS could be a combination of this toxin along with an immune system that failed to clear the infection in a timely manner, if at all.
I encourage you to find a good LLMD and get tested at IGeneX. I have a theory that a lot of people with neuro Lyme test false negative on the standard CDC testing because that testing was developed on people with a bulls eye rash in New England. It has never been validated on established neuro Lyme cases.
I'll keep all my fingers crossed that you can find some resolution. Trying antibiotics seems like a well thought out decision.
Keep us posted with your progress.
And about seeing JUST 3 doctors? Try 15! That was my experience and I even had multiple (like MANY) tick bites, lived in an endemic county, yada yada.
Have you read at the ILADS.org web site? Or articles by Tom Grier? If not, they're excellent.
Keep us posted with your progress.
And about seeing JUST 3 doctors? Try 15! That was my experience and I even had multiple (like MANY) tick bites, lived in an endemic county, yada yada.
Have you read at the ILADS.org web site? Or articles by Tom Grier? If not, they're excellent.
I was not tested for co-infections, but my LLMD is very suggestive I have BART based on symptoms and lesions and he is treating me for it with Rifampin. My LLMD is open and listens, so I think he will see me through this. I visit him every 6-8 weeks unless something is terribly wrong.
I have heard time and time again that many Lyme patients are told "it's not lyme" same in my case for the first 3 doctors in and the first 8 months.
I appreciate you backing up my decision
I have heard time and time again that many Lyme patients are told "it's not lyme" same in my case for the first 3 doctors in and the first 8 months.
I appreciate you backing up my decision
That was my thought about treating lyme. If some MS patients are being treated with Minocycline for an autoimmune disease, then why not take abx no matter what.
I was also misdiagnosed with MS. They call lyme the great pretender. It mimics many illness. Dr Richard Horowitz just came out with a new book called " why can't I get better" he says the MS is Lyme so I would agree to treat the Lyme.
I've never been diagnosed with any type of optic neuritis but I definitely have Lyme, Bartonella, Babs. (Lyme proven by PCR of spinal fluid)
However my eyesight has worsened (of course I'm also aging). Double vision (treated by a Fresnel lens on the left lens of glasses), blurred, sensitive to sunlight. But I live in a state that will not recognize Lyme disease and doctors are 'prohibited' to treat for Lyme unless there's a bulls-eye rash. My ophthalmologist states he sees no evidence of optic neuritis. But........
I think you're making a fairly informed decision to treat for Lyme. The one qualm I might have is----if you go to an LLMD that believes that 30 days of an antibiotic is enough to 'cure' a person.
I was very opposed to antibiotics when I was healthy. (grin) I know that they were responsible for helping me get out of my wheelchair and eventually a long remission. But it wasn't easy and it took a LONG time.
I wasn't misdiagnosed with MS but I was told over and over and over that there was nothing wrong with me and that an antidepressant would help me. Sigh.
However my eyesight has worsened (of course I'm also aging). Double vision (treated by a Fresnel lens on the left lens of glasses), blurred, sensitive to sunlight. But I live in a state that will not recognize Lyme disease and doctors are 'prohibited' to treat for Lyme unless there's a bulls-eye rash. My ophthalmologist states he sees no evidence of optic neuritis. But........
I think you're making a fairly informed decision to treat for Lyme. The one qualm I might have is----if you go to an LLMD that believes that 30 days of an antibiotic is enough to 'cure' a person.
I was very opposed to antibiotics when I was healthy. (grin) I know that they were responsible for helping me get out of my wheelchair and eventually a long remission. But it wasn't easy and it took a LONG time.
I wasn't misdiagnosed with MS but I was told over and over and over that there was nothing wrong with me and that an antidepressant would help me. Sigh.
Have an Answer?
You are reading content posted in the Lyme Disease Community
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods
