Thanks for the title, but I really am just a plain 'ol MS'er that shares what she knows to anyone who wants to listen! :)
1. Does Lyme follow a relapsing-remitting pattern? YES!
In my non medical opinion,,,people that are classified PPMS ( to borrow the term that one of my neuros helped coin,btw) would see a rapid decline in symptoms. Then people like me -RRMS as my neuro said I am; have an immune system that for whatever reason kept this bacteria at a tolerable level. Opposite theories on the immune system as well. With LD our immune systems are basically "sleeping" and can't fight the bacteria. Our immune systems are a remarkable system.....the thought of our immune systems "attacking" itself is really quite silly if you break down what that really means. imo of course! Our poor immune systems need all the help and support it can get....it's not the enemy!
2. Why IGeneX? This is by far the best question. It's testing that keeps so many of us undiagnosed or incorrectly diagnosed. Many of us MS'ers did get tested for LD. ( I never was) and most of those folks test Negative. Commercial Labs like Quest or LabCorp use FDA kits ( the Mardot Marblot)and are restricted to report all the bands; they must follow the manufacturers rules. They follow the CDC "surveillance" criteria which increases the risk of false negatives. These "kits" were Never meant to be a diagnostic tool,,,only for surveillance criteria; yet doctors, or specialist across the country use these very tests TO give a diagnosis! They use labs that use a kit which doesn't report all the bands,,and most of us do test negative. So, LD is off the table!
So much for us that are sick.
The CDC and the FDA on each of their websites state--Lyme Disease is a "clinical" diagnosis, but again commercial labs are used to test for LD and only testing to rule in or out Lyme. Why is the "clinical" part thrown away???? the madness continues.
Lyme docs on the other hand look at your "symptoms". Could they say that some with MS symptoms have Lyme Disease?? hmm, probably....that's how similar these 2 disease are.
of course, Lyme doctors need to protect themselves from the large powerful group they belong to so they chose not to JUST clinically diagnose, but do get tests done to back up their clinical diagnosis..
Now for IGeneX, they specialize in Tick-Borne Diseases,,,and they test for all the LYME bands...
The CDC states that 5 bands on the IgG must be positive--in order to have a Positive test result, and 2 bands on the IgM must be positive in order to have a Positive test result.
Bands 31 and 34 are so specific to Lyme Disease that they were chosen for the vaccine...There isn't a vaccine to date, -the vaccine that did come out went bust and was pulled from the market...(people are still in the process of suing because the vaccine GAVE them LD)!
YET these same 2 bands (31 and34) are not reported in these commercial labs!
Doctors that get results from IGeneX which shows only one band positive or IND -Indeterminate- will more than likely suggest an empirical treatment of antibiotics. and wait for our bodies to give us an answer. Better known as a Jarisch Herxheimer reaction.
No voodoo here, just good doctoring,,by people who were touched by LD in some manner either Themselves, family, friends. Lyme Doctors are a blessing, they have kept so many of us from submitting to this disease.
about the testing you're asking about? Can't help with some of those specifically because I never had those tests. What I do know is most tests come back "normal' when LD is the underlying factor ..
How many are in LimboLand? or un diagnosed? those terms alone should signal continuous searching for answers...I scratch my head when they have designated threads for these poor people....LimboLand? I think it should be called.."take the bull by your own hands and find out what's Wrong" There's always a "reason" why you feel bad!
Heck, many of my relatives have what I call a necklace ring: a reddish purplish line-y rash around their necks, and some have it on their legs....I never saw these web-ish marks...then I learned about Lyme. It's a co-infection!
And checking for Lyme in spinal fluid? a waste of time....and any good Neurologist SHOULD know that! after about 5 days the spirochete turns into a cyst form and cysts can't be detected in spinal fluid! Research states that only 5% of LD is found doing a lumbar puncture.
My reference for this info:
click on "Brochures" on the left...
I have so much more I can enlighten you with.....:) ??
Personally, I have been in LD treatment for 10+ months, just got over a cold, am not resistant to abx,,why? because I "still" have an infection,,,(teenagers are treated for acne for yrs with antibiotics, toddlers have ear infections that are treated for more than six weeks with abx and yet only the Lyme community is targeted for "prolonged" use of antibiotics! It's really almost criminal! My Lyme doc will treat me until I am symptom free....period! how long will that take? ask my immune system to answer that question. When it's fully functioning is the correct time limit.
As a MS patient, I was given a disease modifying drug that states this drug will "hope to" keep me from progressing! and also states This is not a cure for MS.
For 20 yrs I had no hope with my MS diagnosis,,,,just hope for the best. Now yrs later
I am on a course of health, AND the cost of antibiotics is certainly a lot less expensive than the DMD drugs with their slick glossy ads in all the MS papers! yikes
Here's another study that just came out:
"HBI researchers recently found that an existing drug commonly used to treat acne – minocycline
– may help patients with MS by reducing damaging inflammation in the brain. This pilot study led by
Dr. Luanne Metz, professor in the Department of Clinical Neurosciences, assessed whether oral
minocycline prevented the development of new brain lesions caused by MS in ten people with
active relapsing-remitting MS."
I hope I answered some of your questions...
thanks for your time as well,
Tory, I enjoy having you on the board, because of your devotion to making sure that people with undiagnosed, neurological symptoms get the WORD to have the work up be completely thorough. Specifically to get the most definitive testing possible for Lyme Disease. Your discussion about the misuse of the Lyme ELISA test is very good. It was never intended to DIAGNOSE Lyme Disease, but to be used in surveillance of large, healthy populations.
But, I have to offer the counterpoint to some of your broad implications about LD, MS and the testing involved.
1) You claim to be just an ole' MSer who is being cured of what is actually Lyme Disease by antibiotics. This is a little disengenuous. What you are saying is that you didn't have MS and were misdiagnosed. By stating it the way you do you are implying that this is likely the case with other people, too. It would be far more honest to just state that.
2) If you are going to advocate for your cause you need to be better educated on the statements you make. Auto-immunity is an absolutely proven phenomenon. Yet, you state that the notion is really quite silly. There are many proteins (millions) in the body which are normally shielded from the immune system. The system doesn't ever (under normal circumstances) "see" them. But, in the case of injury, infection, cancer, and other conditions, and these proteins are exposed, the immune system can be seen to "turn on" and attack these proteins.
By making the statement that autoimmunity "is really quite silly" you show an ignorance that weakens your whole message, the majority of which has merit. You IMPLY by saying this that all diseases that are called autoimmune are something else - and by not saying what those other things are implying that they are Lyme disease or something like it. I have read statements like this from other Lyme fanatics. This is the first post from you that sounded fanatical. And I believe fanatics are people that believe something for which they have no sound evidence. I'm sorry to hear you take on this tone, because it might cause you to lose your audience. I had to force myself to read the rest of your post, some of which was very good.
An example of autoimmunity which is not Lyme Disease, but is totally understood. The interior of the eye is completely hidden from the immune system. If a person suffers a penetrating puncture of one eyeball, suddenly the protein-rich vitreous is exposed to the blood stream and the immune system. Even if that puncture is promptly closed, often within the next 6 months there is an immune attack on BOTH eyes which can cause total blindness if not treated aggressivly with steroids and immune-supressants. Is this silly and implausable because the body would not "turn on itself?" Are you suggesting that Autoimmune Thyroiditis, Lupus, Sjogren's, Rheumatoid Arthritis, and psoriasis are all caused by Lyme disease or something like it?
Are you suggesting that the antibodies that a pre-exposed, Rh - woman makes against the blood cells of her unborn child (killing it sometimes) are quite silly, because nature would not allow a mother's immune system to attack her own baby? Perhaps this too, is Lyme Disease.
3) If you are going to tell someone that "tests usually come back negative", without knowing what tests they have asked about, it will weaken your credibility further. Momzilla asked about the Babinski test. Well, this is a test done on the body during a normal neurologic exam. LDer's state that LD can cause lesions identical to MS. These are demyelinating lesions, and yes, if they occur in the right spots, Chris, the Babinski test could be positive.
If LD can cause neuropathy then the EMG/NCS should often be abnormal, otherwise you would have to admit that Lyme does not attack nerves, and I don't you would be willing to say that.
4) I'm sorry you were missed diagnosed, if you were. A remission of 10 months or even ten years is commonplace with MS. I hope this is the answer for you. But, if you are going to IMPLY that all/many/some/a few people diagnosed with Multiple Sclerosis actually have undiagnosed Lyme Disease, please be honest enough to state it straight out. Most people do not have a solid medical/biological backgraound, including you. I think you are parroting things you have heard, but do not know enough to evaluate the quality of the information. Yet, you will come onto a site like this and make grossly false statements or broad implications.
Lyme Disease is a spirochete much like the other great imposter, Syphillis. You are going to be treated until you are "symptom-free". What you don't understand about Teritary Lyme Disease (that is, NeuroLyme) if it has caused permanent damage to the nerves (and there is NO DOUBT that it can cause permanent damage), no amount of anitbiotic will return that function. If the LLMD is promising that, you are being sold a bill of goods. The best you can hope for is treatment until you no longer improve and hope that is when you are symptom-free.
4) Again you IMPLY that the discovery that minocycline has been shown to reduce the number of lesion in a few people with MS. You IMPLY and clearly think that this is proof somehow that what they are really treating is LD. What you don't know is that minocycline and some other antibiotics have been known before and independently of MS to have anti-inflammatory properties, like steroids. Their efectiveness in acne was as much this anti-inflammatory action as it was the antibiotic. Improvement has also been seen in MS with the use of Lipitor the cholesterol medication. Would you also suggest that Lipitor is actually treating Lyme Disease?
Please understand what you are implying when you scoff at the notion of auto-immunity - as being quite obviously silly. If you believe that all MS is actually Lyme, please say so! When you stick to facts that have a real, proven basis to them, you make VERY good points. Everyone being worked up for neurological symptoms deserves a REAL, true test for Lyme Disease. Your reasons for this are sound and it helps to have a voice reminding people. We cannot say often enough that the test 99% of all doctors use when they "test" for Lyme disease (the standard ELISA) is inadequate and faulty. Patients need to know this and need to request the proper one sent to a capable lab.
Oh boy, I think we surely got way off the original set of questions.
This is my first post so a little intro probably is in order. I have a husband who was diagnosed with MS is 2004. He quickly commenced treatment with Avonex. We started reading and also started him on some supplements that at least couldn't hurt him and might help....fish oil, some vit D, some ALA, NAC, couple other things.
His exacerbation that lead to diagnosis was thought originally a sinus infection. He was treated first with zithromax and later tequin and oral prednisone. He got worse. Truthfully, before this there had been subtle signs something was amiss. After a bout of Bronchitis and a sinus infection he had numbness and tingling on the outer portion of his right hand. When he got heated he had a dark spot appear in his vision. Years earlier he had had color vision changes.
In Nov of 2005, I began to correspond with some people who were treating their MS with antibiotics because of the research that had come out of Vanderbilt about a ubiquitous, intracellular bacteria (Chlamydia Pneumoniae) that some researchers believe has an association with MS. They described some pretty incredible experiences.
Well, we embarked on the journey with a couple things in the back of our mind. 1.My husband was young, we had three kids and we were darned well going to do everything we could to halt this monster. 2. Tysabri was off the market and without any new vanguard treatments available, we thought what the heck.....the risk of the antibiotics were relatively low (especially compared to DMD's killing people) they weren't taken in huge doses and they were ones that had been used long term for years. 3. To be completely honest, we really didn't think they would work. Our luck had surely been bad lately, and even if we believed that Chlamydia Pneum. caused some people to get MS we didn't think we were lucky enough to have that be a cause of my husband's MS.
My fatalistic views were soon tampered. After two weeks on doxycycline my husband said he felt a little better--less fatigue. So we thought--maybe it's the placebo effect. At that time he added azithromycin. Well here all heck broke loose. He had stabbing pain in his eye, pain in his neck, his eyes wanted to close like a cat when they smell something citrusy, he cried like a baby. In two days with the next dose, there was a drop in body temp, aching all over---generally flu-like symptoms.
If I didn't know better I would have been terribly alarmed. I had done my reading and what most pwms experienced when beginning this treatment was a noticeable increase in symptoms and/or aching pains/sweats/fevers or temp drops etc. I knew this, but my husband knew very little of this "Herxheimer" he really was a pretty pure test subject. Slowly things improved and eventually he was able to tolerate the antibiotics at the doses recommended, but it took a while.
During this time I kept reading like mad. We were from Pa and my husband had spent a good deal of time in the woods. Engorged ticks on him were a common occurrence. He even had rashes as a teenager that were diagnosed as ringworm (could those have been bullseyes??? we'll never know). I learned of the connection between lyme and MS and of the multiple other "co-infections" that can go along with the disease. I knew the antibiotics he was on could treat lyme, but I felt that if he had lyme, he needed to be more comprehensively treated. In Aug 2006 we found a doctor who has extensive knowledge of the MS/Lyme connection and we started treatment with him.
My husband has continued to improve. With treatment for "lyme induced MS"(my term only) it is often a two step forward one back experience. Often a change or increase in medicine will make symptoms worse again for a time, but always he has reached a new plateau. His previously active MRIs have gone silent. His last one actually showed lesions receding a bit. Of course, this sometimes happens in MS, but it is getting harder and harder to write these changes off as pure chance. There are just too many coincidences---he takes certain antibiotics, feels worse for a time, this follows with improvement, he moves on to a better place physically.
In hindsight, we now observe that those infections treated with those certain antibiotics probably created small "Herxheimer" reactions---like the numb tingling hand after the zithromax, like the strange feeling in the face after the zith and tequin that lead to dx. We kind of had an "A-HA" moment.
After all of that, I have to take exception to some of your post "Quix"
1. My husband has MS---he always will according to the insurance company, medical establishment, his employer. I don't think declaring one an MSer is being disingenuous. The question is to cause.
2. Let's really be honest here. Many, many diseases of unkown origin are defined as auto-immune more out of exhaustion than scientific fact. Heck, ulcers were thought to be caused by everything from stress, spicy food, alcohol, etc. Now we know the great majority are caused by a little bacteria called Helicobacter Pylori. I understand that there are some extreme cases of the body attacking itself---but this is NOT common. Faulty immunity in so many human diseases just doesn't make sense. And anyway, it is by far a foregone conclusion in MS. It irks me when research studies start out with the line, "MS is an autoimmune disease" That is just not correct.
3. Momzilla specifically asked about blood tests of which the Babinski test is not
4. Here I would like to pose a question. How exactly should one diagnose MS and rule out Lyme disease? I would like to know how that is done. I think it is almost impossible given that every symptom can be present in both, every diagnostic test can mimic each other------Lesions on Brain, C-spine and T-spine-O-bands in spinal fluid-pleocystosis-elevated MBP- elevated MMP-9, etc. It has been my personal experience that doctors when considering a differential diagnosis use one marker and one marker alone----An ELISA and/or a Western Blot. This is what the CDC and the NIH advise clinicians specifically not to do, yet doctors do it everyday. They use a test that by the CDC's admission missed approximately 60% of cases of known infection!!!! This is abominable and abhorrent.
Now, I am not a doctor but I do know a pretty darn good way to make a differential diagnosis. It would take a little more time and wouldn't be a snappy blood test, but I think it would yield much more accurate results. It's called an empirical trial of antibiotics which is very common and done every day by many a doctor. Someone with probable MS could be treated with antibiotics for a set period of time to determine 1. Do they exhibit a typical "Herxheimer" reaction. 2. Do they improve. It's actually pretty simple.
I think most people treating their MS/Neuro lyme with antibiotics have a pretty good idea that it can cause permanent damage. Knowing when to cease treament is always difficult. The general rule of thumb is to treat two months past symptom free. Believe it or not, some neuro-lyme patients do become symptom free, even those diagnosed with MS. I also think lack of further improvement could be used, as well. But that is much more fluid because there are different antibiotics that one could try as well as combinations and also the treatment of co-infections must be addressed. Generally, patients work with their doctors closely and are hardly being sold a "bill of goods" That is just offensive and really seeks to discredit both treating doctor and patient.
4.(again?) No one knows the mode of action of Minocycline. Because you think MS is autoimmune you believe that it tamps down inflammation caused by T cells. Because I believe MS is an infective process I think Mino works because is kills infection. I always kind of chuckle when I hear talk of the anti-inflammatory nature of Mino, Doxy, etc.........These relatively mild anti-inflam work wonders in MS, yet the mother of all anti-inflams, IV steroids, do not stop lesion formation. Why is that? Furthermore, although my husband has been on some of these anti-inflammatory antibiotics he has been off of them a lot, too. He has had improvement on a vast variety of other abx-not just the anti-inflam ones.
Finally, in fact, the drug clas STATINS has been shown to be antibacterial---there is study after study where researchers are looking at them to treat infections instead of abx that bacteria are becoming resistant to. As a matter of fact, a statin was specifically shown to kill Chlamydia Pneumoniae
I will reply simply - or not - I can't say much simply.
1) You misread Chris' (Momzilla's question.
2) You misstate many of my assertions.
3) You presume I am dubious about the existence, the extent or the curability of Lyme disease. You have no knowledge of my beliefs on the subject
4) In your own zeal and rush to judgment you overread my statements as you claim I overread Tory's.
4) My post doctoral work was in Immunology, and I disagree with you on the subject of the prevalence of autoimmunity. I think infection has a great deal to do with them, but in a far more elaborate manner than pure infection. The data do not support a simplistic antibiotic-treatable cause for the majority of what are called auto-immune diseases. I do support the growing theories of viral mimicry, viral triggers, combined with a host of other factors like susceptible genetic makeup compounded by DNA damage by a toxic environment. I believe that tertiary Lyme and MS are extremely alike. I do not believe they are one and the same - a definite difference of opinion.
4) Infection and the immune havoc it can wreak are not one and the same.
Your idea of a therapuetic trial of antibiotics is interesting.
You mistake my fatigue with nonsensical statements for disinterest or disbelief in the Lyme debate. It doesn't help for someone who knows nothing about the tests being asked about (and NO she wasn't asking only about blood tests, read again more carefully) to flippantly say none of those tests matter because they are usually negative. -- NOT true. Real Lyme infection causes real disease and real findings on physical and diagnostic testing.
People read this forum for information. I provide some, along with opinions. You have provide some, along with opinions. Personally, I am not as swayed as you are by the studies you cite, most of which I have read. They are interesting, but far from probative. One in particular, the minocycline, was done on a total of ten patients. Your reading of them will be colored by your experience with your husband. You wish to expand the definition of MS. That is fine, but before you go about including the "infective" cases of MS with all MS, you owe it to the reader to announce your "version" of the definition.
Finally 4) I hope I would not stoop to mocking someone's typo's to show that their arguments aren't valid. Let's at least debate in a grown up fashion.
3) I presumed nothing of the sort. I addressed your assertion that an MS/Lyme patient does not know that neuro lyme might cause irreparable damage. I further addressed your remark about a doctor selling a patient a "bill of goods." Your statement there was based on a presumption of ignorance of the patient--offensive in my book.
4) Again, examples would help here
4) Your resume is impressive. The jury is still out on the whole autoimmune issue, but for the time being it is a nice fallback for the medical community to lump many disease that we know little about. I don't think enough data collection (in the form of studies) has been done to shed much light on the possible infective cause of some so- called autoimmune conditions. Furthermore, I understand the concepts of molecular mimicry and concede their could be multiple triggers and causes for these disorders. Finally, if you are so sure these two disease (what you call tertiary Lyme and MS) are not one and the same---how do you know this?
4) You state, "Real Lyme infection causes real disease and real findings on physical and diagnostic testing."
This is such a complicated statement and it can be so wrong. In fact, many times "Real Lyme" can present with ALL normal diagnostics. Just like in MS, everything can look OK on paper. MRI's can be clear, blood chemistry is normal, Evoked potentials are normal, Lyme titers can be negative, CSF can be clear...in both diseases. To say that REAL Lyme or REAL MS must show up in diagnostics really smacks of physician bigotry. Just because we haven't found THE diagnostic pearl this does not mean disease does not exist in an individual with normal test results. This is why many people are sent home and told to consult a psychiatrist who can prescribe them ADs. Clearly, it is all in their heads. Poor Polly Murray in Lyme, Ct. was told just that. She was diagnosed with Lupus, she was sent to an insane asylum for a while. She lead us to the discovery of Lyme disease.
4) Continued. I actually think I made my "postition" quite clear. That was the reason for my lengthy background info---didn't you read it? As far as minocycline research studies-you misread my enthusiasm for them. They never swayed me to pursue my husband's treatment. I find them interesting and the use of the drug illustrates the vast difference in the possible causal forces of MS. Don't you find the Statin research interesting, too. Did you know that Statins are antibacterial?
I do not wish to expand the definition of MS at all, what I would love to see is a redefinition of lyme disease. It clearly is not what Allan Steere defined in Lyme, Ct. It does not typically present with a bulls eye rash and flu-like symptoms. It does not primarily cause arthritic symptoms in its first stage and only later moves to a neurological stage. Here's my definition:
Lyme is a complicated multi-system disease. It can present with flu-like symptoms and bulls eye, but it may not. It may lie dormant in your body only later to emerge. It is a brain infection, it can affect one's joints, it can affect one's heart, it can cause psychiatric problems. It can cause many, many vague non-specific symptoms. It is difficult to diagnose because it mimicks many other more well defined diseases. Diagnostic tests are a failure. It is difficult to treat.
Don't worry, I don't think my definition will be adopted anytime soon!
Finally 4)Again? Sorry, my attempt at humor doesn't translate well from the keyboard. No hard feelings there, I hope.
Hi, sojourner- You haven't been properly welcomed to our forum. Welcome! We are usually quite the cozy supportive community here. If you stick around at all, you will see that.
Boy! It feels like Tory called in the Big Guns! ; ) Youch!
I did not ask for a heated debate. I asked for information. Answers to simple questions. I know that Tory is knowlegdeable on the subject, as you are, so I asked her some questions. There is nothing wrong with diasgreeing with each other, or even getting angry.
Quix has probably held her tongue a long time. I know that, as a physician, she probably felt it was her responsibility to 'set the record straight' as she saw fit. I am glad she did. In the same manner, it is your right to express your opinions as you have researched and experienced them. We can all draw our own conclusions. We're all grown-ups here.
There are a few things, though...
You yourself are stating that your husband is only an "MSer" on paper. In the eyes of his employer, insurance company, medical establishment... Just what are you trying to say here about being disingenuous?
About the auto-immunity thing--MS, as you know has just recently started to be classified as such. The medical community must have a reason to have done that. It doesn't make sense to me either. But neither does the miracle of two cells splitting to become eventually a whole complex human being, or some healthy cells becoming cancerous. It doesn't make sense to me, but it doesn't mean it can't be true. I haven't been to medical school. Perhaps it would make sense to me if I had the background and education to understand it.
I would have to disagree with your differential diagnosis, too. Due to the very nature of relapsing-remitting diseases, you could not know for ceratin whether a patient was making an improvent because of or despite treatment. That is to say, if a patient took antibiotics and got better, you couldn't know for certain if it was because of the antibiotics, and therefore Lyme, or if the patient was having a remission, which had nothing to do with the antibiotics, and perhaps therefore MS.
I'm at work right now, and don't have time for this, and cannot organize my thoughts, but I am not happy with all this. I simply wanted a few q's answered. This is silly.
I hope your husband is well. I hope we can all find some peace here.
I personally think engaging in debate is a wonderful thing. On-line communities are a great place to exchange ideas as well as to get support from others. I'm not put off by lively intellectual engagements, as you can tell.
You asked some questions in your original post, I think you got some pretty good answers. Some debate then ensued, but unfortunately there wasn't much light shed on the subject.
I suppose I offer some controversial views on this business of MS, but for that I cannot apologize.
As to your "few things"
About being disengenuous-) it was stated that someone who was dx'd with MS and is now being treated for lyme is somehow being disengenuous by continuing to state that they have MS. My point is that in my husband's situation he has a dx of MS---always will--that is one dx that is pretty difficult to shake. It doesn't matter if he is treated with donkey dung for denge fever......he has MS. This is being honest......Just because he is now being treated for lyme alters nothing. He has MS, always will. My final point speaks to cause......We believe he has MS because he had untreated Lyme.
Autoimmunity in MS- actually the autoimmune theory of MS is not that new. It was first put forth almost a century ago. And MS is not technically classified as such since it never has been proven as such. Unfortunately--and I am going to sound rather cynical here---it is the pharmaceutical companies that have grabbed on to this autoimmune theory and have run with it. They continue to poor tons of money into developing yet more and more "disease modifying" drugs with nay a cure in sight.
Furthermore, one can't possibly use the argument that "the medical community must have a reason to do that." Time and again the consensus of the medical community has been proven wrong. I gave the example of ulcers. The discoverer of H. Pylori as the causitive agent in most ulcers (Marshall) was ridiculed for years. Finally, he ingested the bacteria, gave himself ulcers, cured himself of ulcers and was believed. Some 10 years after this discovery, at most only 10% of U.S. physicians were then treating their ulcer patients with abx. The conclusion here is that the medical community can be wrong and they are often very slow to change. Where does that leave patients?
As far as differential diagnosis-) If what you say is true than how on earth does the research community ever pronounce any disease modifying drug efficacious in MS? If we have no markers for quantifying improvement , how can we collect any data points? There are, in fact, many measures including MRI studies and detailed symptom histories. Also, keep in mind that a spirochetal illness like lyme creates a very distinct reaction to proper administration of antibioitcs. Just as in Syphilis, people with lyme who are treated have a "Jarish/Herxheimer" reaction that is considered diagnostic for the disease. So what really happens is a worsening of symptoms followed by gradual resolution of symptoms. In other words, there is a definite cause and effect relationship between administration of the proper antibiotics and a beginning of feeling poorly. Often this happens at the two week mark.
To keep it really simple, if one has MS, takes a certain antibiotic and feels worse from it, that should raise a lot of questions.
I'm sorry that you feel this is silly, I don't. I think your questions were answered and they were good questions.
Thanks for your well wishes. After almost 20 months of treatment we do think my husband is getting better, his neuro exam was better, his mri was better and he feels better. At first we thought maybe he was just in a remitting phase as you suggest, but as time passes we are less pessimistic and more optimistic that we are on the correct path. Time will tell.
I am the clinical study coordinator in a sugeon's office, and MS is an exclusionary disease for our subjects in the newest study we are participating in because it is considered to be an autoimmune disease of the nervous system. This was not true of the last study we applied for. So, perhaps when it comes to research, it is classified in this way.
I think half my questions were answered. I hope it felt good for you to get all that out and into our forum. And to patronize us along the way. It sure was good for me! I think I'll just ask my neurologist questions about Lyme when I see him in the next few weeks.
I really am glad, though, that your husband is doing better. I hope he continues to do so.
my my my!
I was called a fanatic, and sojourner is patronizing!
How is it --that we with MS for years and years..... find out it's really a bacteria--- go from being part of a community with NO CURE and getting hugs and good wishes--- to being a fanatic?
I offered my opinion in the Auto Immunity theory,,,,,,and I was slammed along with my very very good doctor!
Sell me a BILL of goods? no, not him,,,quite the opposite.
Then I was told I "never really had MS" ! how convenient ......My diagnosis will never change! My lesions have lightened.....but I will always have a MS diagnosis.
My new doctor, looked at both diseases. He never told me to stop Copaxone,,,,,he has no problem with me staying on a DMD while in Lyme treatment! It's was my decision. He's very InClusive
.........Lyme docs don't speak poorly of any doctors,,,,I can't say the same for most conventional doctors about lyme doctors.
My doc works with lots of doctors; actually welcomes it! He would never call another physician crazy or fanatical!
My doc is into "teaching" Neurologists about Lyme Disease.
This is all that I want to share....
Get an IGeneX test!
and if your doctor REFUSES to use IGeneX,,,,well, I guess your doctor knows best!
It's your health and your body,,,but your doctor knows best!
When I had extreme nystagmus I sought out a neurologist .....
why then would you Momz ask a neurologist about Lyme Disease? and expect to get a complete answer????
yes, you're correct and I stand corrected. When I first posted it was in the wee hours of the morning,,and my brain fog must have been in full gear!
I never had a NCV/EMG. thankfully, I again bounced back from most of my "stuff".Such as losing motor skills, optic neuritis,,2 different bouts, did keep the numbness in my foot and then the numbness in my limbs but tolerable.
If my memory is correct the Babinski is the test Neuros use for reflexes? some with a U shaped metal object that buzzes?
Please remember I started this process in 1987 and it's been awhile since "terms" were used during a check-up with my Neurologist.
I got this test each time- from my neuro (over those years) and my current lyme doc also does the same testing, but a bit more thorough.
I can say that I used to have a slight foot drop again for years; I no longer have any,,,he's always smiles when he tells me how "strong" my left foot is!
pardon me for lurking, but i have followed your debate here pretty closely. it got pretty irritating
are you even capable of admitting that you don't know something? it's obvious you don't know the answer to the question about how certain tests might turn out in lyme. you don't even kno what thoses tests are and the second time she asked you still make something up. how can i believe the other stuff you say?
i still want to know. can the nerve tests be abnormal? and the babinski which is not what you describe can it be abnormal in lyme? someomne said it could, but i didn't understand. mine is abnormal
You know, we have, until recently, had a friendly little group here. Perhaps those who like to squabble (HUGELY different from "lively intellectual engagement") might wish to request your own forum. We're supportive and hospitable around here.
Oh my goodness, I typed out my post and it disappeared it the great void. Argg! Of course I can't recall exactly what I typed so this one will be shorter.
I would also like to know if the Emg can be abnormal from Lyme, if there is any medical evidence to prove that. Mine are definitely abnormal.
(But I also have diabetes)
I would like to know about the Igenex labs. What makes them superior, and who all says they are superior, is it anyone besides people who believe they have Lyme?
If they are better, why don't doctors use this lab instead of the others? Just from reading at the Lyme forums, it seems that most everyone who tests there is diagnosed as positive, with different types of readings? This part starts to wave the red flag for me. Its possible I may be misunderstand. Goodness knows its hard enough for me just to read posts and comprehend them.
If they are in one long paragraph my brain just zones out LOL no matter how hard I try to read it.
I do like hearing both sides of the debate. I think it helps educate us (or me anyway) to try and understand the big picture better.
Yes, Lyme can cause an abnormal EMG. If you do a Google search you'll find some research. Brian Fallon from Columbia had shown this in 1994.
Igenex specializes in Tick Borne Infections. First, it is not true that they always return positive results. I know this first hand. What they do do is report all lyme associated "bands" which most labs don't do. In 1994 there was a conference where two of the most lyme specific "bands" were deleted from the tests. These two bands were so specific for lyme that they were used in developing the lyme vaccine. As an example of the effect of these changes it was shown that after 1994 the new standards excluded 60% of children as positive. In other words, on one day a child could have had a CDC positive lyme test and the next they would have been negative. (this goes for adults, too but I don't have the stats).
The government criteria is very strict in order to test positive. They made the criteria strict for disease surveilance not diagnosis but many doctors now require a "positive" test in order to treat. This goes against CDC policy as the test is supposed to be used as a diagnostic tool not an absolute. What Igenex does is report all the bands not just the ones the CDC decided on.
Igenex is not the only lab used but it is preferred by lyme docs and their patients. MDL is also used.
So to clear this up, not everyone tests positive. What you might be misunderstanding is that they have some significantly positive bands. For example my daughter had a positive IGM according to Igenex. She was positive on bands 30,31,41, 58. But she was not positive on band 39 which would have made her CDC positive. Band 31 used to be included in the criteria but was taken out in 94.
I know this is confusing but that's the best I can do on the keyboard.
Gotta go to a school open house, if I can help clear up Igenex or the western blot, let me know.
Is it not possible for your husband to have both lyme and MS. I was diagnosed with MS not to long ago and 3 out of 4 doctors I have seen all seem to think that I definetely have MS but there is also something else. My doctor that I am seeing right now, just my family doc., has said this all along. He's not sure what it might be but he thinks that I should still keep being tested for other things.
I'm not very medically inclined but everyone is wrong once in a while and that's something that you can't seem to see in yourself. I don't know what half of this stuff is you all are talking about but you wont even try to see the other side. All the doctors that I have seen even at the Mayo Clinic have tested me for LD. They did it through the Igenex thing. It was negative. I had a MS specialist and a Lyme specialist doing these tests. They worked together quite well and seemed to see each others side pretty good. If they can do it why can't we?
Oh well, I'm starting to ramble. I think the stroke did something to my ability to type what I'm thinking. For some reason everything I'm trying to say is'nt what I"m typing. This is really weird. I'm just now realizing this.
I hope someone knows what it is I'm trying to say, Thank you.
I also tested negative through IGeneX labs. but I also have "positive bands" on both IgG and IgM.
Although confusing: simply because the test results state Negative....it's for this reason the CDC states that Lyme Disease is a "clinical" diagnosis.
Years ago, when I was thinking of changing Neuros due to less travel; my "new" Neuro was Shocked I never had a Lumbar Puncture. This after being diagnosed and using a Disease Modifying Drug for years...I asked why I needed a spinal now? He said a spinal is the only way to give a MS diagnosis!
hmmm, my original Neuros stated the opposite. They didn't rely too heavily on a spinal for diagnosis...they much preferred MRI's along with "symptoms" They always told me MS is a "clinical" diagnosis. I can only assume this very reasoning was why they never sent me for muscle testing and nerve testing....(I can tell you that my doctors were and still are leaders in MS research)
It's completely acceptable to have these different opinions...in how Neuros "diagnosis" MS.
Same holds true with LD; some doctors look at a negative test result and say NO LYME, other doctors look at the same test results and say having ONE band positive is significant even when the overall test is Negative.
so in granny's case: it would be interesting to see "what" her IGeneX tests results revealed. They list each band on both the IgG and the IgM. Were any bands either positive or IND?
here's a site that speaks of testing-- both the ELISA and Western Blot.
Click on Brochures
and then the link:
What you need to know about ILADS and Lyme Disease.
I'm not a doctor; the best I can offer is what I have dealt with.
I was diagnosed with MS in 1990. I have lesions in my brain and upper cervical spine. MRI's confirmed my diagnosis at the time; my first excasberation was in 1987.
I had Extreme Nystagmus (left eye), double vision, numbness above my lip, numb and tingly arms, weak left leg, brain fog, a feeling of being somewhere else.
At that time -1987-my 2 Neuros from a teaching hospital in Phila sent me home with only steroids and told my family (not me, btw) they think it's MS, but they preferred to "wait" to see if I'd have a relapse prior to diagnosing me.
3yrs past, 1990: I lost coordination in my left hand (I'm left handed) and had numbness in my left side, very painful neck, eye floaters, ringing in my ears, and wks later continuous Trigeminal Neuralgia....my docs ordered 3 MRI's brain, upper cervical, thoracic...and with results in hand diagnosed me with RRMS. In 1990 pain wasn't yet associated with MS so they sent me for a CT scan for the pain. (Now yrs later they know that TN is assoc with MS --and LD). again I was given steroids and sent on my way.
They told me that MS sets a pattern early in the disease. For me, 3 yrs passed in between episodes; they felt I would lead a pretty normal life.
During the next 10 yrs I've had my share of episodes, but none as bad as the first couple . My left leg remained numb and tingly, I had a 2nd bout of optic neuritis, but I was lucky to always regain what I had problems with. The TN is something that never went completely away. I would have this excruciating pain that takes my breath away to the point I'd have to leave work.
When I saw my neuro in 2002 he recommended a DMD because he didn't want me to grow old and need a wheelchair. I asked "why" he changed what he had held to all these years of MS setting a pattern early in the disease. He stated that research has since shown that RRMS can lead to PPMS and if it does it happen it can happen rather suddenly and quickly. So, I happily although scared began the C drug - DMD.
a few yrs later, a family member also was diagnosed with MS which lead me to investigate the Lyme connection--for him--..I never for an instant thought I' d fit into LD; I never pulled a tick off me nor did I ever have a bulls-eye rash, and my neuros were very good doctors.
With the reading and research; I did decide to "try" the infectious theory and I found I do have a bacteria.
To answer your question: is it MS? is it Lyme?
it seems that this is what leads to many getting upset and angry when these two words are close to each other; this was never my intention.
I offered what I personally found out...simply that.
Since I have been in lyme treatment (11 months); my lesions have lightened, some have scaring, some no longer show up, but none have enhanced and I don't have new lesions.
My numb foot is no longer numb, and for the first time haven't had and bouts of TN-so far this year. I still have some past issues. but I feel better.
How am I classified? I will always have MS, I can't get Life Ins, my health ins won't change my diagnosis.
I don't intend for this to become a "hot topic" from my answer....but it's my story for the last 20 yrs. For me personally, I guess I unknowingly never broke it down,,,or insisted on an answer - do I have MS or do I have Lyme, or do I have both.
Like all of us with a health problem; I took the plunge into testing for LD. I know there isn’t a cure for MS, so for me I didn’t think I had much to lose.
I sign off in peace and I wish this entire group health and happiness
You make it sound like all neuros. are wishy washy. I'll just bet if you get 2 LD doctors together they are gonna give diferent opinions about the diseases.
All doctors have their own opinions and sometimes they are right and sometimes they are not. I don't think you should be knocking all neuros just because you did'nt choose a very good one the first time.
There are good doctors and bad ones all around us. You make it sound like MS doctors and LD doctors went to two different medical schools. They each specialize in different fields but they both practice medicine. I think if your LD doctor or any other one for that matter was reading what you are posting they would be offended by how you are making them sound. Instead of making people want to go to one you are turning people away.
I don't mean to be ugly towards you but you wont even try to see the other side. I was willing to try almost anything or go to just about any type of doctor to find out what was wrong with me but after listening to you I would not go to a LD specialist for nothing.
I already tried the Low Dose Naltrexone and we all know how that turned out. (in case you don't it was bad) So, I think I'll just stick to the MS doc. and go from there.
I do hope your husband keeps improving and that he has low pain. I will be praying for him.
Carol, I think you have tory confused with me. I am the one with the husband with MS and treating lyme.
You asked, "Is it not possible for your husband to have both lyme and MS?"
Here's the beginning of the conundrum.
If you believe that MS is an autoimmune disease, where your body attacks its own myelin, than the answer is "Yes"
If you believe, as I do, that some (maybe a lot) of MS is caused by a bacteria called borellia burgdorferi (the bacteria that causes lyme) than "NO." In this case one believes that MS IS neurological lyme.
I think what happened to my husband is the latter. He had multiple exposures to ticks in a highly endemic area for his whole life. When he presented with neurologic symptoms lyme disease was ruled out using a test (which was negative). He also never presented with "so-called" classic lyme symptoms--bulls eye rash, flu-like illness, achey joints, etc. The problem here is two-fold. 1. The lyme tests are wholly inadaquate and this is a fact known by the our government, but the tests are still used in diagnosis. 2. The so called "classic" lyme symptoms are really not that classic after all. The great majority of lyme patients never exhibit these symptoms. So he was given an MS diagnosis and told his immune system was out of whack.
Regarding your dealings at Mayo. I submit to you that if lyme disease was ruled out in your case using a lyme test (from any lab) than that is not the correct way to diagnose lyme. Lyme is clinically diagnosed..period. It seems like your docs are happy to send you on your way knowing that there is something else wrong with you but doing nothing about it. In my opinion, that is not good medicine.
The only way to really know if you have lyme and not MS is to start treating for lyme and see what happens. I know many people think that sounds whacky, but really, "empirical" treatment in medicine is not that unusual. If you get better you had lyme, if you don't than it is something else (autoimmune or other). This is very hard because it can take a long time to know. None of this is easy.
What I don't understand is the animosity toward different views. MS is such a crappy disease with so many variables. Pwms do lots of different things to combat their disease. DMDs, Diet, Supplements, LDN, and in our case antibiotics. Treating MS as an infection is a very provocative idea, I don't expect to have the gates open up and for everyone to understand or agree, but the venom with which we are recieved is confusing.
If in your view your MS is autoimmune and you know this for sure than I am happy that you are happy. If however, there are people out there with other symptoms that don't fit MS and they begin to get multiple diagnosis like------fibro, rhum arthritis, CFS, or have achey joints, heart issues, strokes, and seizures, or are progressing fast and nothing is working, learning about the details of lyme might just help them.
I have ABSOLUTELY nothing to gain from this. My only motive is to share some knowledge that might help. I give correct info which I am always willing to back up and will discuss further. My husband is not the only one who is getting better there are many others and there is compelling evidence that many people may be misdiagnosed. Maybe someone on this board.
I want to apologize but I did get Tory and Sojourner1 all mixed up. Confussion is my middle name by the way. (Granny Confussion Hotwheels). Nice ring to it. Once again I do apologize.
And I do believe that MS is an Auto Immune Disease and I was shown plenty of proof when I was at the Mayo Clinic.
I guess no one will win this argurment. Only time will tell. I guess if it's LD then everyone will be cured and if it's MS then it will come and go until finally it just comes or goes. Who really knows here on earth what our fate is? I'm pretty sure it's not you or me or and doctor. Only the Lord knows our fate and with that said this should end these conversations for good. Right On !!!
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