posted
I have Lyme Disease, I just had lunch with a freind who was dx with MS she said she was tested for Lyme, always neg. She said she had some antibodies present in her spinal tap.
My question is can there be a possiblity she has Lyme? Also if there is a website r links can you send them to me . I will print out all the Info and pass it along. Thanks Annette
Posts: 117 | From Greensburg Pa USA | Registered: Oct 2003
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Very High possibility its lyme. WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. ) See this ( . )thats the size of the larva stage tick... Next nymph size... ( * ) Next is adult ( o ) to ( 0 ) Pretty small????? HUH
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Yes. With Mg low, the antibodies specific to lyme are "damaged" (Fab portion) and that would translate to inaccurate testing since the test measures HEALTHY antibodies specific to Bb.
Now...cholesterol is needed to form the myelin sheath. This is the insulation around the nerves. It is made from a fat (good and bad) and a PROTEIN. Mg is needed to make PROTEINS...all of them...including immunoglobulins (antibodies).
Soooo...if Mg is low and the proteins are damaged...this may impact the cholesterol level...make it high OR low!
However, please note...there are pathogens that deplete cholesterol because the body USES cholesterol (very acidic) to fight them! Listeria, food poisoning, is one.
I'm dealing with that right now. Son's cholesterol is currently 92. He is very sick. This puts him into depression - severe - and puts him at risk for a stroke and bowel cancer. Doubt? On pubmed, type in "low cholesterol cancer".
We are awaiting INTRAcellular vit and mineral levels to PROVE to the doctor that his Mg level is terribly low.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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posted
Spinal taps are about 20% accurate, highly invasive and dangerous. Even the notoriously flawed Western Blot is more accurate for Lyme Disease.
Below is an inspirational story w/facts mixed in. I like testimonials because it is very difficult for people with a specific diagnoses such as MS to give up their comfort zone, not matter how uncomfortable it may be. I had to edit out Tammy's last name and phone # but if you need it, email me.
At the age of 15 I started having horrible menstrual pains where I would double over from the pain. I had excruciating headaches where I could not keep my eyes open from the pain. When I was pregnant with my daughter I had a rash on my stomach that the doctor said looked like some form of shingles and was dismissed but the rash did not hurt.
My daughter was born and her eyes did not seem to focus. If I put my hands in front of her she seemed to not see them. Her legs would turn purplish in color and her leg swelled and on June 6th 1988 she passed away. After her death I started experiencing debilitating fatigue. But I was told this was bladder problems, bowel problems, blurred vision, double vision, weakness in arms due to depression because of the loss of my daughter.
It was an effort for me to do anything, as I was always so exhausted. At this time I was 20 years old. Over the next few years I would have mood swings, continued fatigue, pain in my left ear that would go down to my jaw, and my walking became off balanced at times. This was all attributed to stress and depression and was never taken seriously.
On October 31st I was at work and started vomiting and my balance was real bad so I went to the emergency room. They told me I had an ear infection and I would be better in a couple days. After I went home I was still so sick. My symptoms over the next 2 days were: vomiting; half my face went numb; and the room felt like it was spinning. I saw my primary care provider. He scheduled me to see a neurologist and have a MRI done.
I was admitted to the hospital and was started on steroids and they ran blood tests. The spinning of the room stopped and I still did not feel right. My primary care provider came in and told me I had Lyme disease at one time but that I do not have it anymore. I was never treated for Lyme disease and thought maybe I had lyme but the neurologist said lyme does not cause lesions in ones brain. So I believed him and believed I had MS, as I was always very sick.
My symptoms continued and increased over the years: left leg dragged; walked like I was drunk; memory problems; get confused easily; pain that would come and go; bladder problems; major depression; crying easily; hair loss; muscle spasms; ringing in ears; taste changes; hands and feet falling asleep; light hurting my eyes; debilitating fatigue; etc. During those years I saw 5 neurologists and 2 infectious disease doctors and everyone said I had multiple sclerosis. I would ask about lyme but would hear if I had it the tests would show and nothing ever did.
One doctor sent me to a neurologist because I was resistant to the MS diagnosis since no one knows what it is caused from. She met me at a hospital where experts on MS were going to be. She had them evaluate me to make sure it was MS. She did not tell them what I had but they examined me and said I had MS. My gait was real off and I needed my husband to hold my hand or someone or something to hold on to cause my balance was so bad.
By 98 I had to stop working because the fatigue was so bad and my memory was shot. I could not remember what I was doing or peoples names who I worked with. I was so debilitated my life was a meer existence. I was on Avonex for 9 months then Copaxone for 2 years and 6 months. By now I was sleeping 18 hours a day, and walking to the bathroom was an overall effort. I could do nothing. I had nausea and would get a sick feeling when going to stores or doing anything.
I felt like I was dying a slow and painful death. I would pray to God to give me something that would at least take my life since I was not living at all. All I heard from the doctors was that it is my MS and that I had to live with it. I heard that because of my weak immune system it was harder for my body to fight any type of infection than a healthy person.
I questioned Lyme over the years because I had animals, went camping, and had the rash on my stomach but heard lyme is very rare. So I believed doctors were Godlike; besides who was I to question them? I had tremors in my hands, toe pain, and so many other symptoms. Over the years I was treated for MS with steroids 8 times; Novatrone once; was on Avonex & Copaxone; and medications for my many different ailments.
I just wanted to get better but all I heard was it was all caused by my MS which had now progressed to primary. I looked to God for help because I believed no human could help me anymore. I believed I was going to die and wrote letters to my family letting them know how much I loved them.
Then my husband and I went through my medical records and found a positive Lyme test. My doctor said the blood test was positive, but explained that is why we did the spinal tap; to rule out Lyme. I thought about this and knew I needed to see a Lyme literate medical doctor (LLMD) as quick as possible. I went to New Jersey and found Dr.------ and he told me I should get a lawyer because I do not think you ever had MS. My test came back positive by the CDC criteria for Lyme for the first time in my life, or so I thought.
I contacted a lawyer and found that in 1992 my medical records stated everything showed positive for Lyme, but was dismissed. I could not sue because MS can also be helped with antibiotics and the statute of limitations had already run out, as I was misdiagnosed way back in 1992. I now see Dr. ---- in Boston and he was the first one to ever order a brain scan which showed prior focal encephalitis.
I found out that Lyme does the same damage as MS and documentation that states MS is caused from a spirochete; and that with antibiotics it would be something of historical interest. Still it seems no one cares about what is happening. I believe MS is a strain of a tick-borne illness that is being left untreated. I do not know if they are allowing this to happen because of ignorance or if it is because of money.
But if anyone is diagnosed with MS I would have them look into lyme or one of the 300 co-infections that insects can carry. I have greatly improved. Most of my symptoms have resolved and for the first time in many years I actually have a life. I have talked to others around the world also who were diagnosed with MS, whom also found out that the culprit behind their MS was actually Lyme or one of the co-infections.
I hope and pray that sharing my story will encourage others who have been diagnosed with MS to seek out a Lyme literate medical doctor for diagnosis and treatment of tick-borne disease. It could literally save your life!
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
My understanding of spinal taps is that a positive Lyme spinal tap is pretty definite that you have Lyme. A negative Lyme spinal tap means absolutely nothing.
My LLMD says she has treated a handful of patients who had MS diagnosis and it was really Lyme. Lots of similar symptoms.
Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
MS is a chronic disabling disease of the central nervous system. It is an inflammatory DISEASE that damages the myelin sheath, that surrounds the nerve fibers in the brain, spinal cord and optic nerve. The cause is unknown, theories include a childhood virus (not lyme) that primes the immune system for an attack against the myelin in early adulthood. Reality. The reason why lyme and MS have similar symptoms (the same with lupus) is they are all autoimmune diseases they cause similar responses in the body but, they are not all the same disease. I think it is possible your friend could be misdiagnosed. No one should just accept any diagnosis without doing some research. I would want to get lyme ruled out but, MS is very real. I think we have to be careful what imformation is posted here. Not every disease is related to lyme or ticks, it just isn't. I understand how frustrating it is to be sick and not be able to be treated. It is easy to start seeing the world through lyme colored glasses. I have a husband with MS,that took three years to diagnois and a daughter with lyme who was misdiagnosed for four years. They do have separate illnesses but share some of the same symptoms. When I read the postings dealing with MS and Lyme on this site, it reads as if MS does not exsist and all these poor people with MS have lyme but, just don't know it. If only that were true!
Posts: 70 | Registered: Nov 2001
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Barrie,
Thanks for posting that message. I appreciate what you put into it.
I think sometimes, once we get the answer to what is causing our problems, we want everybody else to find the answer too.
I had a friend who went through MS testing. It turned out to just be a temporary reaction to medication. But there was this part of me, when she really thought she had MS, that wanted it to be Lyme. Because then, at least there was a possibility she could treat the cause and not just the symptoms. Of course I'm much happier that it was neither.
Posts: 4711 | From Washington, DC | Registered: Mar 2004
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How do you know that your daughter has Lyme and your husband MS and not Lyme? I'm not asking to doubt you, but this whole MS/Lyme thing baffles me. When there is no definitive test for either, how is a diagnosis made for MS or Lyme a definite diagnosis? With Lyme tests being so notoriously wrong/false negative, I'm just confused as to how a doctor would distinguish between the two. They share so many of the same symptoms... Plus some of the same test results (brain lesions).
I would love to have your input... Like I said, this has had me wondering for a long time. Of course, it does sound like doctors, even LLMDS, wonder too. Thanks!!!
posted
I have to admit that I expected to be run off this website for expressing a different point of view; and I'm gratified that I wasn't. I will let my husband who has MS and a PhD finish this reply in terms of MS and Lyme.
MS is diagnosed much the same as Lyme disease, i.e., through a combination of history, physical examination, and laboratory and imaging tests. My history was classic MS: A frank viral illness followed by unilateral leg weakness that was initially misdiagnosed as Guillain-Barre syndrome. I had an MRI; visual and auditory evoked potentials; blood work, including Lyme testing; a lumbar puncture; and so on. The clinical constellation was consistent with MS and not with a host of other conditions that they routinely rule out. The MRI lesions, sadly, are classic MS lesions; the foot drop and spasticity, sadly, are classic symptoms; as was the optic neuritis pain, optic neuritis being the classic harbinger of MS. Importantly, I never had any of the classic Lyme symptoms, although, as with MS, I recognize Lyme can present in a variety of ways.
By contrast, my daughter, had a tick removed from behind her ear. The very next day, she had a classic bull's eye rash; our doctor misdiagnosed it as ringworm. We didn't know anything about Lyme at the time and didn't question it. She did not have the classic lyme symptoms initially, but, the next four years, developed headaches and various aches and pains, butnothing that slowed her down. It took four years for her to get really sick. Our doctor tested her for everything. The only blood work that came back abnormal was the Elisa. When she had her lumbar puncture done, the Elisa was also elevated. We finally found our way to Dr. Jones because our doctor still wouldn't treat her for Lyme. She felt that she had Post-Lyme Syndrome, and that was causing an autoimmune response in her body. She has since also tested positive for Babs, Mycoplasma, & Bart. After three years on antibiotics she is doing much better. She just made the school play as one of the four main dancers. This was a child who could barely walk three years ago.
Both MS and Lyme are very difficult to diagnois. And with Lyme, there is such a difference of opinion on the diagnosis of it. There is no one test for MS.
I don't know if this has helped at all. As you can see, we both presented with different symptoms. So, each case has to be evaluated as just that: An individual with different symptoms. I would hope everyone would get a second opinion. I certainly have.
We didn't hesitate to find Dr. Jones when our daughter wasn't being treated correctly (or promptly). We don't blindly follow our doctor's advice without doing a bit of research ourselves. Of note, we see Dr. Jones every three months, and he always asks about me about my MS and we discuss it. Never once has he even suggested that I get tested for Lyme. I don't know if this has helped to clear anything up for anyone.
MS is all too real. My concerns relate to delaying treatments, such as they are, for MS in the interest of confirming a Lyme diagnosis. These treatments are best started early in the disease course. If there's a message, I guess it's keep an open mind. Sometimes MS is just MS, just as Lyme is just Lyme and not fibromyalgia, lupus, or chronic fatigue. Know what I mean? Thanks for listening.
Thanks for the explanation, although it does seem like MS and Lyme almost mimic each other... There have been a lot of people on LymeNet first diagnosed with MS then Lyme. I appreciate your frankness and wish you the best with your treatment. Are you on treatment right now?
My question is about the leg weakness... With what I hope I have is Lyme (sometimes I wonder), I have had right leg weakness for about 8 years. It flares up and goes away... Did yours persist? Mine really isn't visible to anyone else, but really frustrating to me. It makes my bad hurt and my leg tired.
I'm glad to hear that your daughter is doing well... It's so nice to hear wellness stories!!
posted
Barrie, just for arguement sake, consider that MS has been around much longer as a dx and has built a history in and of it self. This all happened long before any medical professional knew or could believe a small bug could carry such a deadly disease like bB.Linking the two seems to be beyond the reach of modern medicene. It is easy to understand why doc's do not believe lyme or something simular causes MS.
Unless a lab test has ruled lyme out, meaning no test at all and I would try them all over the course of time had found any evidence of lyme, would I accept the MS explanation. Untill a researcher finds something that he can state that causes MS, why would any one accept MS as anything except a discription of what ails them. Too many people have gotten better with abx in treating "MS" and have found lyme to be the cause for it to be happenstance.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Curley..
Thanks for posting this.. I needed it today for a new patient who's father is concerned about an MS diagnosis in his daughter who lives in an area where ticks are more plentiful than blades of grass.
Barrie..
I read your posts with interest..
You said..
"My history was classic MS: A frank viral illness followed by unilateral leg weakness that was initially misdiagnosed as Guillain-Barre syndrome."
That is exactly what I had.. and my cousin also. She was diagnosed with GB.. and within 8 years she died.. with Lyme disease. It wasn't GB after all.
You said.. "I had an MRI; visual and auditory evoked potentials; blood work, including Lyme testing; a lumbar puncture; and so on."
Me too... and actually I had about 4... or maybe 5... spinal taps.
You said..
"The clinical constellation was consistent with MS and not with a host of other conditions that they routinely rule out."
That is what they said about me too.
You said..
"The MRI lesions, sadly, are classic MS lesions; the foot drop and spasticity, sadly, are classic symptoms; as was the optic neuritis pain, optic neuritis being the classic harbinger of MS."
WOW! Foot drop.. spasticity and optic neuritis were MY classic symptoms also. The optic neuritis got so bad I am now legally blind.
As for the lesions.. mine too were thought to be classic MS.
I also went to 4 of the countries leading university hospitals.. and to over 100 different doctors.
They ALL missed the Lyme and several tick borne co-infections I had... even thought they ran nearly every stinking test on me known to man.
Today.. after proper diagnosis and treatment.. I am much better.
I am posting this article below for you.
Hope it helps.
STARI- THE OTHER LYME DISEASE
Lucy Barnes
Master's Disease (aka STARI) was described in the early 1990's by Dr. Ed Masters of Cape Girardeau, MO, when a number of people were bitten by lone star ticks and developed Lyme disease symptoms. Many patients had a classic rash, nearly identical to the one described in people infected with the more well known strain of Lyme, however, the standard Lyme disease tests were not able to detect evidence of the infection in humans.
Recently DNA evidence of a strain of spirochete similar to the one that causes Lyme disease was detected in lone star ticks collected from nine different states, according to the US Army Center for Health Promotion and Preventive Medicine in Aberdeen, MD. Borrelia lonestari, or STARI, the nick name used to describe this strain, was also detected in the blood of white tail deer, in Sika deer skin samples, and in ticks removed from wild raccoons.
In 2004, visualization of live lonestari spirochetes were reported for the first time by researchers at the University of Georgia using dark field microscopy. According to the CDC, a skin biopsy from a rash resembling the one that can appear in Lyme disease patients was tested for the Borrelia lonestari. The patient reportedly had exposure to ticks in Maryland and North Carolina. The biopsy of the Lyme-like rash, along with the tick that was removed from the patient, both showed evidence of the lonestari strain. Standard blood tests for Lyme disease again failed to detect the presence of infection from this strain of Lyme disease.
People who have been told they do not have Lyme disease and/or who were denied treatment based on negative blood tests should be re-evaluated by an experienced physician if they remain ill, have fluctuating symptoms, or developed additional symptoms.
Anyone who has been denied treatment because the tick that bit them was not a ``deer tick'' may want to take a closer look for the source of any ongoing or worsening symptoms they may be experiencing.
Lone star ticks are able to transmit STARI to humans, as well as a number of other tick borne diseases, such as Erhlichiosis (various strains), Rocky Mountain Spotted Fever, Tularemia (rabbit fever), and possibly additional, yet to be discovered, bacteria and viruses. Some of these infections can become chronic or fatal if not promptly or properly treated.
Lone star ticks, Amblyomma americanum, have been found in approximately half of the states in the US. They have also been collected from migrating birds returning to Canada from southern locations. The ticks current known range in the US extends from Texas to Oklahoma, eastward towards the Atlantic coast, and northward to Maine. These ticks are extremely aggressive and actively search for blood meals. Residents from areas with high tick populations have reported removing over 100 of these ticks after a single outing.
Adult lone star ticks are larger than deer ticks, however, the nymph stage ticks can be as small as the period at the end of this sentence. A light colored patch, or star, is displayed on the back of adult female ticks, giving the tick their common name.
Ticks infected with STARI have been found just outside major city limits, posing risks to rural residents and city dwellers alike. Cardinals, wrens, sparrows, woodpeckers, brown thrashers, wild turkeys, bobwhite quails, and other birds are known to transport ticks from site to site. Raccoons, opossum, fox, squirrels, rabbits, mice, and deer are also hosts to this species of tick and provide necessary blood meals during their various stages of growth.
People infected with STARI may develop the rash that may also be seen in approximately 50 percent of the patients who have the more well known strain of Lyme disease. Other STARI symptoms can include fatigue, headaches, possible fever, muscle aches, stiff neck, and joint pains. Untreated or under treated STARI has not yet been documented by the CDC to cause the same debilitating effects found in chronic Lyme disease patients with the similar strain, however, research is ongoing and by no means, complete.
The International Lyme and Associated Disease Society (ILADS), has noted in the past, ``surveillance studies show that these patients [seronegative] may have a similar risk of developing persistent, recurrent, and refractory Lyme disease compared with the seropositive population.'' The CDC has recently been requesting samples of blood, urine, and skin biopsies from suspected STARI patients in order to study this specific strain. Unfortunately, the current standard Lyme disease tests on the market were not developed to detect evidence of infection from a variety of strains of spirochetes found in ticks. As experienced physicians know, these tests are very limited in their ability to aid in a proper clinical diagnosis of tick borne diseases.
The discovery of this specific strain of Lyme may help explain why ILADS states that up to 90 percent of people with Lyme disease are being missed using the current two-tier testing procedures recommended by the Centers for Disease Control and Territorial Public Health Laboratory Directors and approved by the Food and Drug Administration.
According to Dr. Nick Harris, the Western Blot and PCR Lyme tests developed for use at IGeneX Lab in California are broad enough to be able to detect various Borrelia strains across the US, rather than just one single strain. "IGeneX tests are sensitive to the lonestari variety of Borrelia, as well as burgdorferi,'' explains Harris. Patients with various strains of Lyme have been detected in a number of states. IGeneX Lab offers testing for other tick borne infections such as Babesiosis, Erhlichiosis, and Bartonella. Lyme disease is the fastest growing infectious disease in the nation. The CDC and state health departments admit considerable underreporting of Lyme disease, with as many as 7-12 cases being missed for each one reported in some states.
A knowledgeable doctor, use of a high quality lab for testing, and proper tick borne disease diagnosis and treatment would be especially important to people in endemic areas who continue to have fluctuating or relapsing symptoms and/or have developed late stage neurological, arthritic, psychological, or other related Lyme disease symptoms. Untreated or improperly treated Lyme disease (Borrelia burgdorferi) can become a devastating chronic illness that can severely affect individuals, as well as entire families.
Late stage or chronic Lyme disease symptoms can mimic other conditions such as Parkinson's, Alzheimers, MS, Lou Gehrigs (ALS), depression, arthritis, Scleroderma, Lupus, heart problems, chronic fatigue syndrome, Fibromyalgia, ADD, panic attacks, pain syndromes, thyroid disorders, or other conditions. Although no official treatment protocol has yet been standardized for this specific strain of Borrelia, antibiotics normally prescribed for acute or chronic Lyme disease have been provided to patients suspected of having STARI, and the patients have improved.
posted
It was actually my husband who posted the last reply. He isn't here to reply right now. After he wrote that last reply, I realized how different his symptoms were from my daughters. She had very bad headaches, neck pain, visual disturbances, joint pains, sore throat, light sensitivity, jaw pain, dizziness and more I am probably forgetting right now. My husband, with MS, had none of the above. She presented with such a different picture then he did/does. When I read some of the postings, I start to think that some think Lyme is the cause of every illness. Since we are dealing with both Lyme and MS, if we thought for one second that my husband didn't have MS, we would be on the phone finding a LLMD in a heartbeat. That is what we did with our daughter. My husband is a Johns Hopkins grad, he does cancer research for a living. Works with the world's top oncologists. He is on top of all the latest cancer research out there. He is a smart man, he reads everything about MS and is very knowledgable. He has connections to doctors across this country. We appreciate people concerned about a misdiagnosis. In our case, it just isn't true. There are some that will never believe that MS is real, I can't do anything about that. Like my husband, my fear is that some who have MS, are looking for something else. And will waste valuable time trying to prove it is really Lyme. MS is very, very, real. We live with it everyday. I am not going to post anything else here. It is very frustrating. I feel like a lyme patient trying to convince my doctor I really have lyme. Other diseases exsist and ticks have nothing to do with them. Skrwolf, I know my husband would be happy to answer your question. Just email me directly. To whoever asked, he is on several medications. He does Copaxin injections daily to prevent a relapse. There is a new IV med that just came on the market, it is a monoclonal antibody that he is looking into. Best of luck, and good health to everyone.
Posts: 70 | Registered: Nov 2001
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quote:Originally posted by Barrie: It was actually my husband who posted the last reply. He isn't here to reply right now. After he wrote that last reply, I realized how different his symptoms were from my daughters. She had very bad headaches, neck pain, visual disturbances, joint pains, sore throat, light sensitivity, jaw pain, dizziness and more I am probably forgetting right now. My husband, with MS, had none of the above. She presented with such a different picture then he did/does. When I read some of the postings, I start to think that some think Lyme is the cause of every illness. Since we are dealing with both Lyme and MS, if we thought for one second that my husband didn't have MS, we would be on the phone finding a LLMD in a heartbeat. That is what we did with our daughter. My husband is a Johns Hopkins grad, he does cancer research for a living. Works with the world's top oncologists. He is on top of all the latest cancer research out there. He is a smart man, he reads everything about MS and is very knowledgable. He has connections to doctors across this country. We appreciate people concerned about a misdiagnosis. In our case, it just isn't true. There are some that will never believe that MS is real, I can't do anything about that. Like my husband, my fear is that some who have MS, are looking for something else. And will waste valuable time trying to prove it is really Lyme. MS is very, very, real. We live with it everyday. I am not going to post anything else here. It is very frustrating. I feel like a lyme patient trying to convince my doctor I really have lyme. Other diseases exsist and ticks have nothing to do with them.
Barrie,
I for one DO NOT THINK that MS is always caused by Lyme.
But MS IS caused by something, is it not???
Does your husband believe he got MS out of nowhere?
Does the immune system spontaneously turn on itself?
It is my understanding that the immune system needs a little bit of help before it turns on itself.
I think any of the following can cause this: virus, bacteria, heavy metals, and probably a whole slew of other things.
I also believe that in some cases MS is an infectious disease in disguise...
Lyme being an example of this as many can attest to on LymeNet.
I also believe that in some cases MS is triggered as a separate disease by a secondary effect of an infectious disease...
...LD being an example of this since it's able to mess with the immune system.
So is MS actually Lyme? Sometimes!
So is your husbands MS triggered by Lyme or is it Lyme? Maybe, maybe not!
But there is no way your husband can say:
"I know 100% sure that I do not have Lyme and I know 100% that my MS is not caused by Lyme."
There is a chance it is, no?
You're saying all these things about your husband that he's a cancer researcher and so on.
I don't know if that's a good thing or a bad thing for him.
Most people would probably think it's a good thing, right?
I however think it's not such a good thing because the experience I have had with mainstream doctors, and what I have heard esteemed medical researchers say and do in the news, tells me the contrary.
In fact, I'd go so far as to say that of all people in the world, doctors and medical researchers, are probably the most difficult people to be open minded about new avenues in medical research, diagnosis and treatment.
We have experienced this "behavior", if you will, first hand by the ducks, no?
I mean to help when I say this, but why should your husband be any different?
As far as I'm concerned, since I don't know him, he's bound to belong to that 99% of doctors who are close minded to the notion that infectious agents, heavy metals, etc can cause most of the neurological diseases, incl MS.
It amazes me how anyone can settle for a lifelong diagnosis of MS.
I hope for your husband that he is truly open minded. Cause if he is not, it won't help him squat that he's a cancer researcher.
Don't think doctors know everything about medicine. I wish. Doctors operate within the field of expertise that they have a background in and where they are comfortable. Moving outside that scope can be difficult or impossible for a doctor. I hope you see that.
There are countless examples over the centuries of researchers thinking they know it all and where a few people have tried to convince 99.9% of their peers are wrong.
The fact is that diseases and medical conditions that are poorly understood, are
POORLY UNDERSTOOD.
Thus, even though there are 1000's of MS experts around the world who all know a heck of a lot about MS, doesn't mean they are right about it AT ALL.
Go back 10-15 years and imagine yourself going to the doctor with backpain. What would he tell you if you told him, "Doctor I've heard that the best thing for backpain is to get out of bed asap and walk around and go swimming and so on."
The doctor would tell you, "If you do that I can't take responsibility for you cause you're being non-complient with my treatment which is for you to stay as much as possible in bed for the next week."
Another example is wrt to weight diets. If you told your doctor you had heard about a low-carb somewhat fatty diet that caused weight loss, the doctor would have told you, "Not on my shift you're not!"
And most recently, it has been discovered that epilepsy (in children I believe) can be successfully and totally healed with a simple fatty diet. No kidding. It's called the Ketogenic diet.
The most interesting thing about the K. diet is why the doctors wouldn't prescribe it to their patients, even though they KNEW about it. Because they "didn't believe in it" and because "there was not sufficient scientific explanation to back it up and thus they couldn't justify the treatment".
This is all understandable, it just doesn't help the patient.
Forgive me if I'm upsetting you. But I just wanted to try one more time to give your husband hope.
Just because some ducks say there's no cure, DOES NOT mean there is no cure.
Some times WE have to find the cure ourselves. And it's often easier than we think. But we have to be totally open minded before we even have a chance of doing so.
quote:Originally posted by Aniek: My understanding of spinal taps is that a positive Lyme spinal tap is pretty definite that you have Lyme. A negative Lyme spinal tap means absolutely nothing.
posted
Barrie and others......PLEASE leave spaces every few sentences. It's SO hard to read otherwise! Thanks! Posts: 96222 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Barrie..
Please don't run away unhappy. Please try to have an open mind. I understand your wanting to dismiss other options.. but before you do.. maybe ask yourself..
"What are the negative consequences if I don't check out ALL possibilities?"
First off.. there are over 5,000 members here alone.
That alone is a small clue that SOMETHING is going wrong or things are not what they seem in the medical world these days.
After all.. if Camp A were right.. there wouldn't be a Camp B.
I am estimating approximately 60 percent of the folks here who were misdiagnosed before finding out they had Lyme.. were given the MS diagnosis.
This happens ALL the time.
Ask your hubby since he is into cancer research... did he know they are finding spirochetes.. as we speak.. in the prostate tissues of a number of men who were diagnosed with prostate cancer?
With treatment for Lyme they are recovering.
He probably hasn't seen the results because I believe they are not quite ready to be published but are in the process.
Has he seen the research report where approx 20 tonsils (post surgery) were checked for spirochetes.. and EVERYONE of them were cultured positive for spirochetes?
Did he know about the study of Lou Gehrigs patients who were tested for Lyme... just in case? There are sooooo many it is unbelievable.. that are culture positive for Lyme... that were misdiagnosed with Lou Gehrigs... and they are responding to treatment for Lyme.
Did he know that soon the results of studies will be released that links Lyme and sexually transmission?
Has he seen Hopkins research that shows Bartonella (cat scratch fever) is being found in HIV/AIDS patients in Baltimore?
Does he know how many HIV folks test positive for Lyme and/or co-infections.. and when treated for them.. they happily can disgard the HIV diagnosis?
There is no doubt there IS something called MS...
Just like there is something called pumpkin pie.
But you need to remember.. MS is just a NAME. Just like "pumpkin pie".
Heck.. we could all be eating sopeklut vawme at thanksgiving.. instead of what WE refer to as pumpkin pie. It is simply a NAME assigned to something... by US.
Until you know the cause and cure.. MS is just a name assigned to a certain set of symptoms and the process it causes of going down the tubes with those symptoms.
No doubt it is devestating.. just like Lyme and cancer can be. I don't doubt that.. but I question the label and want to know what causes it so it can be properly addressed instead of having the symptoms covered up while possible infections take over the body.
You said, about your daughter...
"She had very bad headaches, neck pain, visual disturbances, joint pains, sore throat, light sensitivity, jaw pain, dizziness and more I am probably forgetting right now. My husband, with MS, had none of the above."
EXACTLY!
Use THAT example to look closer at your hubby's situation.
With your thinking.. your daughter can't really have Lyme either... cause it isn't the same as the other children who originally had Lyme.
The first cases of Lyme were originally found ONLY in children who were diagnosed with JRA... or Rheumatoid Arthritis. That is a TOTALLY different presentation than your daughters!!
So you must ask.. Does she really have Lyme?
So.. looking at it that way... is it such a stretch to dismiss Lyme disease in hubby because his symptoms aren't the same as those in your daughter... or in the other children?
One of my friends recently had the MS diagnosis. We later discovered she was actually suffering from Lyme disease and Erhlichiosis.
It was VERY difficult for her family to believe this could possibly be true. After all, the biggest University hospitals confirmed it with all the fancy tests, blah blah blah.. and many doctors said it was, no doubt, MS. Even SHE doubted Lyme ... and was SUPER SLOW accepting it.. even after having several positive tests for Lyme and co-infections and getting better from the Lyme treatment!
Later when I heard of her childrens situation.. we had them tested for Lyme. Their symptoms were completely different from the mother's... and from each other. They had a variety of symptoms and were diagnosed with several "conditions" for which there was no known cause and no known cure... such as MS.
Both ended up having Lyme... and one also showed positive for Ehrlichiosis.
It occured to her.. once the family dog tragically died from Lyme.. that if she had MS... and the kids had MS..
Did the dog also die from MS?
No.. the dog didn't die from MS.. it had Lyme.
For some reason.. MS folks cling to their diagnosis and hang onto it for dear life.. in spite of the best efforts to get them to simply EXPLORE other avenues. They are the hardest nuts to crack because they are absolutely convinced it is a condition called MS... a condition WE made up the name for AFTER folks got this stuff.
Unfortunately, many MS folks will go to their grave believing they have MS and will not open up their minds to Lyme. Mostly because some big shot docs said it was MS... and the sucky Lyme tests that are missing up to 90 percent of those with Lyme are negative.
Fine and good if you WANT to have a condition called MS.... however.. why be the stick in the mud and ignore breaking research? Why not positively go for it?
As my pharmacist said.. also a relative of mine..
"If there are 20 pills out there that might help.. why stop at 19?"
I understand your wanting to cling to the MS diagnosis.. and since your hubby is "up there" in the medical field.. I know HE thinks he is the best at determining what he has. If MS makes his troubles more livable.. be it far from me to rock the boat.
But.. If at some point he thinks about the cause of the illness... I would hate for him to have missed the chance to improve his health.
Last week I had a call at 10 PM from a doctor I didn't know, never heard of.. who MADE me tell them what to do for a patient who was tossed out of the hospital because Hopkins doctors said it couldn't possibly be Lyme.. and this doctor who called me knew it was Lyme... and they needed help desperately for this child.
This doctor HID from the other doctors and called me from home at night because Hopkins doctors refused to do anything to help this child... and they knew the patient was suffering and there was NO way Hopkins would believe it or help them.
That is SAD stuff when doctors are AFRAID to admit they have been wrong and refuse to help a child.
You said..
"My husband is a Johns Hopkins grad, he does cancer research for a living. Works with the world's top oncologists. He is on top of all the latest cancer research out there. He is a smart man, he reads everything about MS and is very knowledgable. He has connections to doctors across this country."
Wow.. I would LOVE to see him help out with the research between cancer and Lyme!!! Until the folks look for the spirochetes in the biopsies.. more people will be missed. We have a larger than normal incidence of breast cancer patients with Lyme than normally seen. Actually I was misdiagnosed with it.. and it turned out it was Lyme. Anyhow...
Ask hubby if he has read what HOPKINS says about Lyme... (Author- Bartlett.. I believe the lastest document was the 2002 report? Anyhow.. you can look it up.)
Treatment.. ONE dose of doxycycline is all that is needed for a tick bite in an endemic area.
We now have IDIOT doctors all across Maryland .. who.. because of this CRAP.. are insisting that folks who KNEW they were bitten by ticks.. and who HAVE the rash.. and have ongoing Lyme symptoms..
ONLY get ONE FREAKING DOSE OF DOXY!
When .. ever in history.. has there been an infectious disease that was cured by ONE dose of doxy?
I assume if you go to Dr. Jones.. you have figured out this is not likely.
So why is HOPKINS advocating this protocol?
I call it the Magic Pill Theory.. kinda like the Magic Bullet Theory in the Kennedy situation.
Why does Hopkins say NO to treating pregnant women who have Lyme?
Why does Hopkins say .. let me get the exact quote..
OOPs.. here is an autopsy report on a Lyme patient at HOPKINS who was misdiagnosed with MS.. who died. I stumbled across that while looking up the quote... I will post it below.
Ok... Here is the quote...
"Patients with chronic fatigue, joint stiffness &/or muscle aches should not have Lyme disease serology & should not receive Lyme disease treatment."
They advocate NO TESTING... OR TREATMENT.. for people with the MOST COMMON Lyme symptoms!!!
HELLO!
Ok.. I am angry.. as those here who know me can tell ... and the members are probably betting at what exact time my head will explode.
I am angry because.. for example.. this week alone I have been dealing with a concerned father who has called me EVERY DAY for the past week and has been BEGGING me for more and more information to TRY to get his daughter to consider Lyme instead of the bogus dianosis of MS.
In the meantime.. I have discovered he has another daughter with a rash.. after a tick bite.. and Bells Palsy. She was given one dose of doxy and told the Lyme she had was cured.
He has another family member with ADD and several other problems linked to Lyme.. and a positive Lyme test... but who got no treatment.
And three more family members who have all been diagnosed with various problems.. and while he was listening to me.. he discovered they too may be infected.
This IS a problem.. because this family is living in.. what I call.. one of our better known Lyme sewers. Ticks are HORRID there.. and have been for YEARS!
I have spent over 20 hours this week alone talking to, calling, mailing, emailing, etc.. to help this ONE man and his family. He and I are both frustrated about the MS situation and the Hopkins influence on the local doctors by teaching them their junk... while more and more suffer.
Our local support groups here.. just outside Hopkins.. has reported over double the numbers of folks coming for help just in the past year.
The there is STARI.. the OTHER Lyme disease found within 20 miles of Hopkins.. that the Lyme tests were not designed to pick up.
Call Hopkins... call the Infectious Disease Department.
If you call for an appointment.. they are no longer taking Lyme patients! Any other infectious disease is ok.. but NO Lyme patients.
I am not sure how many possible law suits they have to deal with right now concerning misdiagnosed Lyme patients at their facility .. but I do know this is a problem just from the numbers of people I have spoken to who were suffering and attempting to bring actions against them.
My guess is... if you got this far.. you probably won't do anything about it.. but HOPEFULLY... someone else WILL relate to it and search for answers instead of settling for an MS diagnosis.
NO.. I don't believe all MS and other conditions are Lyme.. but I do KNOW that MANY MANY MANY are being missed.
I have watched this go on for 18 years.. and until I kick the old bucket.. I will keep encouraging everyone who will listen to BE SURE.. and double sure.. and keep checking.
Lyme IS the curse of the 21st Century... but "they" won't know that for another couple hundred of years.
I do hope whatever your course in life.. you are the best you can be... and happy.
At least I now feel like I have tried to help.
It's up to you now... drink or walk away.
I am not a doctor.. the above is only my opinion.
One of several Johns Hopkins autopsy reports.. MS/Lyme.
Case No: 7. Autopsy No.: #26488 Age (decades): 40 Sex: Decade of Autopsy: 1990 Key Number: 26972 diagnosis multiple sclerosis age ;. progressive deterioration neurologic status requiring total care admission ;. intravenous adrenocorticotropic hormone ;. adjustment medications ;. phenobarbital ;. positive LYME serology ;. admission meridian nursing center hills ;. paraplegia ;. postural tremor ;. recurrent ;. coli urinary tract infection ;. aspiration thin liquids ;. increased difficulty swallowing ;. decreased oral motor control ;. five pound weight loss past six months ;. declining mental status ;. patient family decision gastrostomy tube placement secondary patient wishes against artificial life support ;. initiation comfort care only orders ;. discontinuation food fluids ;. elevated temperatures degrees ;. shallow respirations ;. apneic spells ;. decreased responsiveness ;. death hours ;. extensive multiple periventricular demyelinated plaques bilateral cerebral hemispheres cerebellum basal ganglia brainstem high levels cord ;. brain weight ;. moderate hydrocephalus vacuo ;. purulent material ;. bacterial overgrowth bronchi bilateral lungs consistent ;. aspiration ;. focal hemorrhage small foci acute bronchopneumonia apical posterior basilar bilateral lungs ;. combined weight ;. squamous metaplasia urinary bladder ;. cause death part ;. multiple sclerosis .
------------------ If you get the choice to sit it out or dance...
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