Aa
Don't know where to begin
I have been lurking around here for a few weeks now and I have decided to post to get your opinions. It will probably be long, so I apologize in advance if you read all the way throught it.
I am 45 years old and began feeling ill back in late 2006. I was totally wiped out and had zero energy. No matter how much I slept, it was never enough. I got thru the holidays that year and shortly thereafter, I got a viral infection and was sick for roughly 10 days. Coming off the viral illness, I began to start twitching in my right calf. Within a few days, it went bodywide and I twitch like this to this day. This was very disconcerting to me and I went and saw my GP. He chalked it up to the viral illness and maybe I was dehydrated, but he did mention possible MS. He suggested that I have a MRI done, which I did not expecting that much out of it. Well, when I returned for the results he told me that I had a few tiny nonspecific lesions bilaterally in my frontal lobes. The radiologists report said not typical for MS more like migraines or lyme disease.
Two days later, I get a call back from the GP's office and he told me that I tested positive for Babesiosis, which is a parasitic infection, or coinfection you can get when bitten by a tick. This kind of explained the previous months of feeling so tired and the possible viral illness. The GP said I was negative for Lyme though. I began my research and decided to see a Lyme Literate doctor after falling into quite a funk about what the heck was wrong with me. The GP sent me to a neuro who laughed at the prospect of me having Lyme and said I most certainly didn't have MS. He did my first of 3 spinal tap's which have all been negative. He also did an EMG test which was fine as well. I saw the Lyme doctor and was put on a regimine of meds and slowly began to feel better. This was no easy task and it took a good 4 months. I can honestly say that I never got back to 100% though. As I mentioned earlier, the twitching has never gone away.
Fast forward from early 2007 to last summer....I was feeling good throughout this time and had no real issues besides migraine auras. No headache pain, just the auras. Then in July of last year I began getting off and on tingling in my hands and feet and sometimes my face. It was always bilateral and never one sided. I also started getting finger joint pain and thought I was starting to get RA. This lasted for roughly 6 to 7 weeks and kind of disappeared. The finger joint pain comes and goes but the tingling was gone. I went back to the GP who sent me to a Rheumy and then a new neuro (the one I saw previously had relocated to CA) and my appointment was with the new female doctor. I was concerned about the migraine auras because I had very few before, but they are increasing in frequency and of course the tingling. By the time I got to see her in October, the tingling was gone. She did another spinal tap, this was my 3rd as the Lyme doctor did one in between and all negative. The neuro also did another MRI. I have had 5 I think since 2007 and all remained stable until the last one. The neuro stated my MRI showed 2 new lesions, one lateral to the left ventricle and one in the left semiovale. She said she wasn't concerned because the tap was good and I was feeling better. She poo pooed the new lesions and said they were probably there before.
Fast forward to the end of June this year. I start having a weird pain in my sinus area on the right side of my face. It is kind of a dull ache and I am getting some kind of nerve pain throughout both sides of my face. This begins to concern me and sure enough, within days of this happening, the tingling is back again. It has been going on for a little over a month now. I went back to the neuro and she did yet another MRI. Another lesion was found in my right frontal lobe that was slightly enhanced. That is the first time I have ever had an enhanced lesion.
I have been reading about Trigeminal Neuralgia and it has sent me over the edge. I have been in such a depressed state over the last 2 weeks, I can't believe I may be looking at not only a MS diagnosis, but
Trigeminal Neuralgia as well. The only good thing I can say is that my thoracic spine MRI was clear. There was no mention of any brainstem lesions, at least not yet.
I guess I am looking for some input as I am having a very difficult time with this. My neuro gave me a referral to the Yale ms clinic but my appointment is not until November. I am trying to just get up and get to work everyday and function normally, but I am not doing well. I think I could deal with the MS diagnosis, but all of the reading regarding TN is absolutely terrifying. It doesn't appear that there are many options for treatment when you have MS. It seems to just be heavy meds. I guess maybe I am looking too far ahead, but I guess I am waiting for the next shoe to fall.
If you have read this far, I appreciate it as I know what a long story this is. I was just hoping for some insight or input as to those who MS. I guess it has been a long road for me and I thought MS was taken off the table years ago only to be thrust back into this full throttle again. I am terribly frightened and riddled with anxiety of the days ahead.
I am 45 years old and began feeling ill back in late 2006. I was totally wiped out and had zero energy. No matter how much I slept, it was never enough. I got thru the holidays that year and shortly thereafter, I got a viral infection and was sick for roughly 10 days. Coming off the viral illness, I began to start twitching in my right calf. Within a few days, it went bodywide and I twitch like this to this day. This was very disconcerting to me and I went and saw my GP. He chalked it up to the viral illness and maybe I was dehydrated, but he did mention possible MS. He suggested that I have a MRI done, which I did not expecting that much out of it. Well, when I returned for the results he told me that I had a few tiny nonspecific lesions bilaterally in my frontal lobes. The radiologists report said not typical for MS more like migraines or lyme disease.
Two days later, I get a call back from the GP's office and he told me that I tested positive for Babesiosis, which is a parasitic infection, or coinfection you can get when bitten by a tick. This kind of explained the previous months of feeling so tired and the possible viral illness. The GP said I was negative for Lyme though. I began my research and decided to see a Lyme Literate doctor after falling into quite a funk about what the heck was wrong with me. The GP sent me to a neuro who laughed at the prospect of me having Lyme and said I most certainly didn't have MS. He did my first of 3 spinal tap's which have all been negative. He also did an EMG test which was fine as well. I saw the Lyme doctor and was put on a regimine of meds and slowly began to feel better. This was no easy task and it took a good 4 months. I can honestly say that I never got back to 100% though. As I mentioned earlier, the twitching has never gone away.
Fast forward from early 2007 to last summer....I was feeling good throughout this time and had no real issues besides migraine auras. No headache pain, just the auras. Then in July of last year I began getting off and on tingling in my hands and feet and sometimes my face. It was always bilateral and never one sided. I also started getting finger joint pain and thought I was starting to get RA. This lasted for roughly 6 to 7 weeks and kind of disappeared. The finger joint pain comes and goes but the tingling was gone. I went back to the GP who sent me to a Rheumy and then a new neuro (the one I saw previously had relocated to CA) and my appointment was with the new female doctor. I was concerned about the migraine auras because I had very few before, but they are increasing in frequency and of course the tingling. By the time I got to see her in October, the tingling was gone. She did another spinal tap, this was my 3rd as the Lyme doctor did one in between and all negative. The neuro also did another MRI. I have had 5 I think since 2007 and all remained stable until the last one. The neuro stated my MRI showed 2 new lesions, one lateral to the left ventricle and one in the left semiovale. She said she wasn't concerned because the tap was good and I was feeling better. She poo pooed the new lesions and said they were probably there before.
Fast forward to the end of June this year. I start having a weird pain in my sinus area on the right side of my face. It is kind of a dull ache and I am getting some kind of nerve pain throughout both sides of my face. This begins to concern me and sure enough, within days of this happening, the tingling is back again. It has been going on for a little over a month now. I went back to the neuro and she did yet another MRI. Another lesion was found in my right frontal lobe that was slightly enhanced. That is the first time I have ever had an enhanced lesion.
I have been reading about Trigeminal Neuralgia and it has sent me over the edge. I have been in such a depressed state over the last 2 weeks, I can't believe I may be looking at not only a MS diagnosis, but
Trigeminal Neuralgia as well. The only good thing I can say is that my thoracic spine MRI was clear. There was no mention of any brainstem lesions, at least not yet.
I guess I am looking for some input as I am having a very difficult time with this. My neuro gave me a referral to the Yale ms clinic but my appointment is not until November. I am trying to just get up and get to work everyday and function normally, but I am not doing well. I think I could deal with the MS diagnosis, but all of the reading regarding TN is absolutely terrifying. It doesn't appear that there are many options for treatment when you have MS. It seems to just be heavy meds. I guess maybe I am looking too far ahead, but I guess I am waiting for the next shoe to fall.
If you have read this far, I appreciate it as I know what a long story this is. I was just hoping for some insight or input as to those who MS. I guess it has been a long road for me and I thought MS was taken off the table years ago only to be thrust back into this full throttle again. I am terribly frightened and riddled with anxiety of the days ahead.
Hi Tina! Sounds as if you have really been through the ringer! Sorry to hear you are having so much trouble!
I wanted to let you know that I have TN and really honey, there are things that help. I presented with Grand Mal Seizure s and was put on Tegretol back in 1993 when I was diagnosed with MS. Now, my dosage has been raised and now I am on Gabapentin(Neurontin) for almost 4 months. TN is not a pleasant thing to have when it rears it's ugly head but there are meds that can help and they are working all the time to find relief for TN patients. My neuro told me that I have SPMS and TN and if the pain doesn't not subside with the Gabapentin that he would be doing surgery to sever the nerves that are causing the problem. I don't want that certainly but will if I have to.
I hope you are able to get a diagnosis and some relief soon girl and as I said, TN is not the end of the world although it feels like it some days. You can take comfort in knowing that it's is not the end of the world and there is help out there. Please keep us updated as to your progress and as you can see there is a lot of people that want to help you here...your best bet is to stick around and you can get a lot of info on how to deal with your neuro's and how to ensure that you are your own best advocate. Nice to have you join our little family!
Lots of Hugs,
Rena705
COMMUNITY LEADER
So fundermentally when your talking about MS misdx and Lyme, its not from factual research evidence but perception based or a theory thats going around, so its anacdotal and unsupported. Just a word of warning regarding anacdotal, although at some stage in the future there probably will be more lyme research, just keep in mind that only a fraction of the theory's when researched will be proven to be fact, 'most' theory's though do actually fail when tested under ethical research.
Honestly, there are so many theory's that get told over and over that they take on a level of believability just through the retelling, its why there are so many theorys or myths connected to MS, or even any other condition you can think of. I think its always prudent to hang onto a 'healthy level' of sceptism, in regard to any anacdotal stories, no matter where or who its coming from.
Think about probablity numbers, eg lets say a Lyme literate dr see's 100 new patients a year concerned about Lyme, logically not all those patients will end up with a dx of Lyme. Its more than logical to assume that some of those new patients will have been previously dx's with something else, MS being just 1 of them. You can't ignore that a Lyme literate dr is uncommon, so people seeking out a Lyme dr will be highly suspicious that they either have undx Lyme or have been misdx with something else.
If 10% of those new patients had an 'official clinically defined' dx of MS (which is statistically a high %) and you factor in the MS misdx stats of 5-10%, then the actual number of people misdx with MS is negligable. Even if every new patient was officially dx with MS, the stats wont support the theory or perception that is being made by any one dr or clinic.
All i'm saying is that you need to keep in mind the difference between research based evidence and anacdotal, there is a huge difference and its in peoples best interest to remember the stats.
Cheers...........JJ
PS interesting site
Honestly, there are so many theory's that get told over and over that they take on a level of believability just through the retelling, its why there are so many theorys or myths connected to MS, or even any other condition you can think of. I think its always prudent to hang onto a 'healthy level' of sceptism, in regard to any anacdotal stories, no matter where or who its coming from.
Think about probablity numbers, eg lets say a Lyme literate dr see's 100 new patients a year concerned about Lyme, logically not all those patients will end up with a dx of Lyme. Its more than logical to assume that some of those new patients will have been previously dx's with something else, MS being just 1 of them. You can't ignore that a Lyme literate dr is uncommon, so people seeking out a Lyme dr will be highly suspicious that they either have undx Lyme or have been misdx with something else.
If 10% of those new patients had an 'official clinically defined' dx of MS (which is statistically a high %) and you factor in the MS misdx stats of 5-10%, then the actual number of people misdx with MS is negligable. Even if every new patient was officially dx with MS, the stats wont support the theory or perception that is being made by any one dr or clinic.
All i'm saying is that you need to keep in mind the difference between research based evidence and anacdotal, there is a huge difference and its in peoples best interest to remember the stats.
Cheers...........JJ
PS interesting site
It isn't so much that there is a specific study of MS vs. Lyme, but that doctors familiar with treating Lyme and university researchers write articles and talk at conference about the trends they see. Many of them say that we need studies on this (YES!), but there doesn't seem to be one in the public domain that I can find. Some doctors believe there is Lyme induced MS because of their experience with patients who developed MS after a Lyme infection. But without a good study to look at the numbers, we don't really know. I am confident ticks bite people who were going to develop MS anyway, so who knows if it is coincidental or causative?
This link lists several medical articles, patient stories, and other misc references to MS vs. Lyme, so it might be helpful for you.
http://www.lymeinfo.net/multiplesclerosis.html
Here's a sample quote from a Columbia University conference (LNB = Lyme Neuroborreliosis):
Dr. Peter Hildenbrand (Harvard University):"Lyme Neuroborreliosis: The Great Neuroimaging Imitator" .... The white matter pattern of involvement in LNB may be sufficiently similar to that of multiple sclerosis to suggest either a common demyelinating pathway or Borrelia subunits as an indirect MS causative antigen.
Found at: http://www.columbia-lyme.org/research/scientific.html
As far as Lyme misdiagnosed as MS, nobody has counted these folks either, but they're all over the message boards and Lyme treating doctors report significant numbers of patients who were told they had MS. Once in a while, someone with MS gets misdiagnosed with Lyme. At least incorrectly prescribed antibiotics are far less likely to hurt someone than incorrectly prescribed immune suppressants.
This link lists several medical articles, patient stories, and other misc references to MS vs. Lyme, so it might be helpful for you.
http://www.lymeinfo.net/multiplesclerosis.html
Here's a sample quote from a Columbia University conference (LNB = Lyme Neuroborreliosis):
Dr. Peter Hildenbrand (Harvard University):"Lyme Neuroborreliosis: The Great Neuroimaging Imitator" .... The white matter pattern of involvement in LNB may be sufficiently similar to that of multiple sclerosis to suggest either a common demyelinating pathway or Borrelia subunits as an indirect MS causative antigen.
Found at: http://www.columbia-lyme.org/research/scientific.html
As far as Lyme misdiagnosed as MS, nobody has counted these folks either, but they're all over the message boards and Lyme treating doctors report significant numbers of patients who were told they had MS. Once in a while, someone with MS gets misdiagnosed with Lyme. At least incorrectly prescribed antibiotics are far less likely to hurt someone than incorrectly prescribed immune suppressants.
COMMUNITY LEADER
Hi just letting you know that TN is commonly associated with MS, but it can also be a stand alone dx. We've discussed this topic here numerous times. you can see prior topics by placing your question in the "search this community" box at the top of the page. Also if you google TNJ and MS you'll get 17 million hits, many forum discussions or research based.
Out of interest, could you give me a link or name of the research that claims an increase in misdx MSers who instead have lyme disease, i'm quite interested :o) thanks!
Cheers..........JJ
Out of interest, could you give me a link or name of the research that claims an increase in misdx MSers who instead have lyme disease, i'm quite interested :o) thanks!
Cheers..........JJ
I am so glad you know about Lyme! Sorry to hear your doc isn't practicing anymore. There are too few already!
My spinal tap was negative for Lyme also. In my case, it was what you describe, where I just didn't have any bugs in my spinal fluid. It was too busy partying in my brain, nerves, ribs, gut, and a few other abdominal organs.
I have heard of some people with Lyme who have symptoms of TN, but I don't recall seeing it on any of the MS boards I have read. Of course the long timers here would know far more about that than I would. ;)
I do have a friend recently diagnosed with TN (and no other symptoms) who said the pain was horrific. I don't know what medication she is on, but she said it gave her her life back. Are you just on the Paxil, or also on a pain med for the TN?
I have also read that researchers have noticed more MS than usual in people who previously had Lyme Disease. I know this isn't great news, and it doesn't mean anything for any one person, but be sure to take your VitD supplements while you're in limbo.. I hope you get answers soon!
My spinal tap was negative for Lyme also. In my case, it was what you describe, where I just didn't have any bugs in my spinal fluid. It was too busy partying in my brain, nerves, ribs, gut, and a few other abdominal organs.
I have heard of some people with Lyme who have symptoms of TN, but I don't recall seeing it on any of the MS boards I have read. Of course the long timers here would know far more about that than I would. ;)
I do have a friend recently diagnosed with TN (and no other symptoms) who said the pain was horrific. I don't know what medication she is on, but she said it gave her her life back. Are you just on the Paxil, or also on a pain med for the TN?
I have also read that researchers have noticed more MS than usual in people who previously had Lyme Disease. I know this isn't great news, and it doesn't mean anything for any one person, but be sure to take your VitD supplements while you're in limbo.. I hope you get answers soon!
Hi Everybody,
First off, I want to thank everyone for the thorough responses and just for reading my very long post. I needed a few days to take this all in and respond. I actually went to the emergency room on Friday because I was getting no help from my neuro's office and my gp told me to go there.
I was there about 11 hours and they were quite thorough. I think the neuro that saw me spent more time with me than my regular neuro during all of my visits with her. They looked at my MRI and listened to my complaints of facial and eye pain with now some neck stiffness. They said the MRI doesn't seem to be consistent with MS, but clearly something is going on. The neuro said that the most current lesion was a diffused lesion, not an enhancing one. I do not understand the difference. I know that enhancing means it is new, but I do not understand the diffusion part.
The scary part is that is that the neuro mentioned it looked like a stroke, but then it didn't. Whatever the heck that means. She assured me it was not even in the location for MS.
Either way, I contacted my lyme doctor and started taking Biaxin again. I took it the week before if you remember, with Plaquenil and had a reaction with a rash. The doc put me on a 5 days of oral steroids which did absolutely nothing. I have to call the Yale neuro's office and have a nerve conduction study. The ER doc seemed to think this fit more like peripheral neuropathy.
Ricobord, thanks for the info regarding Lyme. I am actually quite versed in that and the IDSA vs ILADS debate. When I was sick back in 2007, I saw 2 LLMD's and did antibiotics for quite awhile. One of the docs was the president of ILADS at the time. He is since out on a medical leave since last year and I do not think he is returning to practice. His loss is definely felt by the CT lyme community.
My spinal taps were checked for Lyme and all were negative. I was told by several docs and read several articles how poor the PCR testing is for Lyme because the spirochetes do not hang out in the fluid. They like deep tissue.
Lastly, does anyone have any experience with Trigeminal Neuralgia as a presenting symptom or do you suffer from it. I think I can actually deal with a MS diagnosis, but the TN is absolutely terrifying me. I started taking Paxil about 10 days ago and yesterday and today my depression and anxiety levels were at about a level 5, instead of the 10 that they have been over the last few weeks. I need to keep my job and my sanity! This board has been a welcome respite to know that I am not alone with this, no matter if it's MS or Lyme or something else. I just need to figure it out and get some respite from this aching in my cheek and face.
First off, I want to thank everyone for the thorough responses and just for reading my very long post. I needed a few days to take this all in and respond. I actually went to the emergency room on Friday because I was getting no help from my neuro's office and my gp told me to go there.
I was there about 11 hours and they were quite thorough. I think the neuro that saw me spent more time with me than my regular neuro during all of my visits with her. They looked at my MRI and listened to my complaints of facial and eye pain with now some neck stiffness. They said the MRI doesn't seem to be consistent with MS, but clearly something is going on. The neuro said that the most current lesion was a diffused lesion, not an enhancing one. I do not understand the difference. I know that enhancing means it is new, but I do not understand the diffusion part.
The scary part is that is that the neuro mentioned it looked like a stroke, but then it didn't. Whatever the heck that means. She assured me it was not even in the location for MS.
Either way, I contacted my lyme doctor and started taking Biaxin again. I took it the week before if you remember, with Plaquenil and had a reaction with a rash. The doc put me on a 5 days of oral steroids which did absolutely nothing. I have to call the Yale neuro's office and have a nerve conduction study. The ER doc seemed to think this fit more like peripheral neuropathy.
Ricobord, thanks for the info regarding Lyme. I am actually quite versed in that and the IDSA vs ILADS debate. When I was sick back in 2007, I saw 2 LLMD's and did antibiotics for quite awhile. One of the docs was the president of ILADS at the time. He is since out on a medical leave since last year and I do not think he is returning to practice. His loss is definely felt by the CT lyme community.
My spinal taps were checked for Lyme and all were negative. I was told by several docs and read several articles how poor the PCR testing is for Lyme because the spirochetes do not hang out in the fluid. They like deep tissue.
Lastly, does anyone have any experience with Trigeminal Neuralgia as a presenting symptom or do you suffer from it. I think I can actually deal with a MS diagnosis, but the TN is absolutely terrifying me. I started taking Paxil about 10 days ago and yesterday and today my depression and anxiety levels were at about a level 5, instead of the 10 that they have been over the last few weeks. I need to keep my job and my sanity! This board has been a welcome respite to know that I am not alone with this, no matter if it's MS or Lyme or something else. I just need to figure it out and get some respite from this aching in my cheek and face.
Ricobord -
Thanks for the thoughts... so far things are milder then many others and I've not had a 2nd major attack in over a year now, just dealin with the lesions that are there prior to discovering their presence.
I have read so many theories about who gets MS... the part I actually laugh at is I can say yes to so many of the theories...
prior infections... yep exposed to lyme and had a nasty staph infection 21 years ago at the end of my pregnancy with my daughter
family history of autoimmune... yep, no MS, but diabets, RA, gout and something that killed my oldest brother that we still don't have an answer for
where you live.... born / raised in MD; live in PA
lack of sun... heck I burn walking past a lightbulb
lack of vitamin D.. milk, blhhhk unless its satured with chocolate
age at onset... yep I'm that magical 40something female
Or its just pure luck of the draw.... up til now, I've been extremely healthy, no worries excep that staph infection back in 1991.
If you see a study about lyme / MS pop up anywhere, let me know. Happy to sign up if they can learn anything. I know I am an oddity.
The belief that it was past infection that was fought off is correct in my case only becase the spinal tap included testing for any lyme DNA even if it was dormant and I'm clean.... I'm just weird, accepted that in life long ago :)
I hope you're doing well!!
Jen
The idea that IgG bands represent a past infection is unfortunate mythology from years ago that many doctors still believe. I am amazed at the contradictory and downright wrong information doctors have about Lyme. And the CDC surveillance criteria, which was not developed as an absolute diagnostic criteria, adds to the confusion. Your IgG Lyme result is indeed CDC positive (5 or more IgG bands out of 10).
Some people's immune systems fight it off, until they suddenly become ill with Lyme after a major stress, like surgery, giving bIrth, a death in the family, or losing a job. It is also believed some strains are more or less virulent than other ones, and getting infected with a mild strain could act like a vaccine, setting the immune system up to fight off future infections, at least for a couple years.
It does sound like you have a robust immune system. I am very sorry to hear you have developed MS. Some researchers have noticed cases like yours and think there is a link between people with prior Lyme infections and subsequent MS. There are theories out there that autoimmune conditions have an infectious trigger, and that Lyme might be one of the triggers for MS. (Obviously there are plenty of MS-ers out there who've never had Lyme.) Just theories at this point, but interesting nonetheless.
If there is a study in the future of the Lyme-MS connection, be sure to sign up! Maybe they can learn something from you. In the meantime, I hope your MS is mild and that your attacks are few and far between.
Some people's immune systems fight it off, until they suddenly become ill with Lyme after a major stress, like surgery, giving bIrth, a death in the family, or losing a job. It is also believed some strains are more or less virulent than other ones, and getting infected with a mild strain could act like a vaccine, setting the immune system up to fight off future infections, at least for a couple years.
It does sound like you have a robust immune system. I am very sorry to hear you have developed MS. Some researchers have noticed cases like yours and think there is a link between people with prior Lyme infections and subsequent MS. There are theories out there that autoimmune conditions have an infectious trigger, and that Lyme might be one of the triggers for MS. (Obviously there are plenty of MS-ers out there who've never had Lyme.) Just theories at this point, but interesting nonetheless.
If there is a study in the future of the Lyme-MS connection, be sure to sign up! Maybe they can learn something from you. In the meantime, I hope your MS is mild and that your attacks are few and far between.
I think MS is becoming a catch for doctors who don't know how to properly diagnosis or pursue all the symptoms... and honestly when you're dealing with neurologists, they seem to have some of the biggest egos in the medical field. Once they make a decision, come hell or high water thats what the problem is....
My 6 bands were past infection, can't remember now if its IgG for pastand IgM for active?? I had 6 past and 1 current which technically is negative for lyme.
Having fought off the lyme... my primary doctor teases me that I've a super immune system for years, I was not to the doctor for cold, flu or much anything else for almost 5 years. When bug went around, most people were out sick for a week, I would feel crappy one night an be fine the next day. The off the cuff logic is that with the ramped up immune system which eventually lead to MS, the lyme was like a treat! The infectiuous disease doc did take some blood for his own curiosity as to what antibodies and such I had in my system.
I still think part of the situation was having horses, we were exposed to ticks all the time... one farm where our horses lived, the deer would come out and graze at night with the horses, so who knows how many times I was actually bit and what natural immunity built up.
But, several doctors expressed the same comment, it is pretty amazing to have 6 bands of past infection/exposure and never be treated and have no active lyme. How knows, maybe that is a thank you to the MS.... Or what caused the immune system to kick into really high gear and get off track... chicken or the egg...
I still tease my primary doctor that I'm a problem child and he just loves a good challenge :)
Jen
Jen's advice is excellent. I essentially pursued both, even as I became convinced of which one I had. What directed me to look elsewhere was when I developed symptoms inconsistent with MS. (My 1st neuro even said my tingling wasn't consistent with MS tingling.) I read many, many stories of people with MS and Lyme, trying to see where I best "fit." Both are indeed individualized and highly varied, but there are also certain trends with both.
Lyme and MS can be strikingly similar and can both be difficult to diagnose. The problem for the patient is that the treatment for one is usually contraindicated for the other.
Why I responded so strongly about Lyme is because you describe a previous experience with Lyme and Babesia, and that you were treated but never fully recovered. You match the description of chronic Lyme, and taking steroids is a risky proposition.
Jen -
I am in awe of your ability to fend off a Lyme infection! That is known to happen, but it's not very common. So many doctors are enslaved to the test results, I am not terribly surprised a doctor wanted to treat you for Lyme with 6 bands and Lyme-like symptoms. It sounds like your GP was right in thinking it just didn't fit.
Yours is the first time I have seen a first person report of someone misdiagnosed with Lyme. I have read legions of stories that were the opposite. I think we are in dire need of a required class in medical schools to teach doctors to recognize both diseases and to know how to tell them apart. Lyme is fairly recently discovered and not well understood by most doctors, not to mention the massive controversies about it. But what's with all the bad doctor stories about MS? What is up with that? MS has been known a long time, and there is little, if any controversy. How can so many of today's doctors be so ignorant and/or misinformed about MS?
Lyme and MS can be strikingly similar and can both be difficult to diagnose. The problem for the patient is that the treatment for one is usually contraindicated for the other.
Why I responded so strongly about Lyme is because you describe a previous experience with Lyme and Babesia, and that you were treated but never fully recovered. You match the description of chronic Lyme, and taking steroids is a risky proposition.
Jen -
I am in awe of your ability to fend off a Lyme infection! That is known to happen, but it's not very common. So many doctors are enslaved to the test results, I am not terribly surprised a doctor wanted to treat you for Lyme with 6 bands and Lyme-like symptoms. It sounds like your GP was right in thinking it just didn't fit.
Yours is the first time I have seen a first person report of someone misdiagnosed with Lyme. I have read legions of stories that were the opposite. I think we are in dire need of a required class in medical schools to teach doctors to recognize both diseases and to know how to tell them apart. Lyme is fairly recently discovered and not well understood by most doctors, not to mention the massive controversies about it. But what's with all the bad doctor stories about MS? What is up with that? MS has been known a long time, and there is little, if any controversy. How can so many of today's doctors be so ignorant and/or misinformed about MS?
Hi Tina, I am new to all of this as well. I can really relate to your facial pain. Do you have what I call "phantom tooth pain?" For me, it feels like every tooth on my right side has a toothache. I also have a feeling like Novocaine is wearing off in my mouth, and my nose tingles. I also have shooting pain in the right side of my jaw and temple. These episodes come and go, and some are worse than others.
I am trying to stay positive and do what I can to help my body be healthier. The anxiety is tough. Very difficult to ignore when one's body is so out of whack.
Just wanted you to know I understand.
Hugs,
Minnie
I am trying to stay positive and do what I can to help my body be healthier. The anxiety is tough. Very difficult to ignore when one's body is so out of whack.
Just wanted you to know I understand.
Hugs,
Minnie
Keep in mind that may people are diagnosed with lyme (as i raise my arm and wave my hand wildly), treatment is started and turns out its not lyme after all.... lyme and MS can present very very similar, too similar sometimes....
Be careful with just following one path or presume its one or the other, have both checked out, even if it means couple doctor visits.
I so very much regret letting the first neuro convince me it was lyme even tho my primary was not buying it.... I had really horrible reaction to the rocephin, just about landed me in the ER... by the time I had the head to toe bright sunburn red rash, my LP came back showing o-bands.
Not saying its lyme or its MS... just begging you to not just pursue one. Your exact symptoms can be what someone with lyme has and they can be so positive its lyme you're dealing with... then your exact symptoms could be what someone with MS experienced... everyone is different and both lyme and MS can present specific to any given person.
Hopping off my soapbox :)
Jen
A reference for you: http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
This document was very helpful for me as I was searching for answers. I essentially had to figure out for myself that I had Lyme, as I stumped a dozen doctors. I am 46 and was first infected in 2005. I can relate to your frustration. Please come post on the Lyme forum there there are others who can also offer suggestions and encouragement.
This document was very helpful for me as I was searching for answers. I essentially had to figure out for myself that I had Lyme, as I stumped a dozen doctors. I am 46 and was first infected in 2005. I can relate to your frustration. Please come post on the Lyme forum there there are others who can also offer suggestions and encouragement.
Please don't take any more steroids!!! Odds are very high that you were never fully treated for your Lyme Disease and the prednisone will make you much worse.
Babesia only occasionally sickens people by itself, However with Lyme, it can be nasty. It is mostly a coinfection of Lyme. Were you treated for the Babesia? How long?
I have Lyme Disease, and I tested false negative on a blood screening test and in my CSF. Doctors who treat a lot of Lyme Disease know that only about 30% of Lyme patients will show antibodies in their CSF and so they don't do spinal taps looking for Lyme anymore. Unfortunately, most mainstream doctors don't know this.
There is a big conflict in the medical community, and you are yet another patient to suffer as a result. One camp says the tests are always right when they are negative, and sometimes false when positive. This same camp says it is always cured with a short course of antibiotics. Most neuros, rheumies, and University hospital doctors are in this camp.
I strongly discourage you from talking to Yale doctors about Lyme. They are one of the worst places for long term Lyme patients as they are famous for diminishing it, telling sick patients they don't have it, and discouraging doctors from diagnosing it. Just a few months ago, Yale out put a Lyme risk map for states east of the Mississippi, and essentially said there is no Lyme in the south. They said that positive blood tests should be considered false positive unless the patient could prove they had travelled to a highly endemic area. Yeah, tell that to all the miserable Lyme sufferers in the south! The U of Texas recently published results of their tick survey saying that 25% of ticks tested from all over the state had Lyme. Yale is very focused on a narrow segment of Lyme patients with sore knees and a rash. You are way past that.
Another camp (ILADS), says that the tests are highly unreliable (and there is PLENTY of scientific evidence to show this is true, that 30-50% of Lyme patients test false negative on blood antibody tests,, and that it can be quite difficult to cure in patients who have had it for many years, have coinfections, and have had steroids. (Steroids suppress the immune system, allowing the bacteria to get entrenched even deeper.)
Every single symptom you describe is consistent with Lyme, including the migraines and breaking out in multiple rashes on antibiotics. The migraines could esily be causing your additional lesions, but so could Lyme. I have about 20 lesions, nearly all believed to be caused by my combination of Lyme and Bartonella.
You need to find a LLMD, Lyme Literate Medical Doctor, who is associated with ILADS. Please go to ILADS.org for a referral, or contact a local support group to ask who is the best in your area. Find one a soon as possible so you can get on antibiotics, especially since you just took prednisone. I was given prednisone, and it sent me into a downward spiral of new and worsening symptoms that sent me to the ER twice and into the hospital for 3 days. I think my tachycardia would have killed me if I hadn't gotten to an LLMD when I did. Travel if you have to. Some people fly in to see my doc from other states and even countries where they cannot get treated.
BTW, my Lyme mimiced MS. I got a full work up for MS, and was told by an MS specialist that I don't have it. My coinfection, Bartonella, usually makes the neuro and GI symptoms of Lyme worse. You could also have Bart given your neuro symptoms.
You will need to get tested at IGeneX, a specialty lab that finds a lot more cases than standard "mill" labs. An LLMD will know what tests to order.
Babesia only occasionally sickens people by itself, However with Lyme, it can be nasty. It is mostly a coinfection of Lyme. Were you treated for the Babesia? How long?
I have Lyme Disease, and I tested false negative on a blood screening test and in my CSF. Doctors who treat a lot of Lyme Disease know that only about 30% of Lyme patients will show antibodies in their CSF and so they don't do spinal taps looking for Lyme anymore. Unfortunately, most mainstream doctors don't know this.
There is a big conflict in the medical community, and you are yet another patient to suffer as a result. One camp says the tests are always right when they are negative, and sometimes false when positive. This same camp says it is always cured with a short course of antibiotics. Most neuros, rheumies, and University hospital doctors are in this camp.
I strongly discourage you from talking to Yale doctors about Lyme. They are one of the worst places for long term Lyme patients as they are famous for diminishing it, telling sick patients they don't have it, and discouraging doctors from diagnosing it. Just a few months ago, Yale out put a Lyme risk map for states east of the Mississippi, and essentially said there is no Lyme in the south. They said that positive blood tests should be considered false positive unless the patient could prove they had travelled to a highly endemic area. Yeah, tell that to all the miserable Lyme sufferers in the south! The U of Texas recently published results of their tick survey saying that 25% of ticks tested from all over the state had Lyme. Yale is very focused on a narrow segment of Lyme patients with sore knees and a rash. You are way past that.
Another camp (ILADS), says that the tests are highly unreliable (and there is PLENTY of scientific evidence to show this is true, that 30-50% of Lyme patients test false negative on blood antibody tests,, and that it can be quite difficult to cure in patients who have had it for many years, have coinfections, and have had steroids. (Steroids suppress the immune system, allowing the bacteria to get entrenched even deeper.)
Every single symptom you describe is consistent with Lyme, including the migraines and breaking out in multiple rashes on antibiotics. The migraines could esily be causing your additional lesions, but so could Lyme. I have about 20 lesions, nearly all believed to be caused by my combination of Lyme and Bartonella.
You need to find a LLMD, Lyme Literate Medical Doctor, who is associated with ILADS. Please go to ILADS.org for a referral, or contact a local support group to ask who is the best in your area. Find one a soon as possible so you can get on antibiotics, especially since you just took prednisone. I was given prednisone, and it sent me into a downward spiral of new and worsening symptoms that sent me to the ER twice and into the hospital for 3 days. I think my tachycardia would have killed me if I hadn't gotten to an LLMD when I did. Travel if you have to. Some people fly in to see my doc from other states and even countries where they cannot get treated.
BTW, my Lyme mimiced MS. I got a full work up for MS, and was told by an MS specialist that I don't have it. My coinfection, Bartonella, usually makes the neuro and GI symptoms of Lyme worse. You could also have Bart given your neuro symptoms.
You will need to get tested at IGeneX, a specialty lab that finds a lot more cases than standard "mill" labs. An LLMD will know what tests to order.
Thank you all for reading my long drawn out tale. What I am so scared of is the anxiety and depression that is taking hold of me with this. I can't shake it. I need to keep my job and have been doing just half days so far this week and called it today. I feel at a loss as to what to do next if the other shoe does drop. I think the neuro that I just saw is a ding a ling and doesn't know what to do with me.
I started meds with the Lyme doctor just to see if I had a reaction and I broke out in a rash all over my body. That was very strange because I had taken the Biaxin and Plaquenil combo for quite awhile previously with no adverse reactions. Actually, that is what made me feel better years ago. So the doc had me stop them and take a prednisone pack and I have never done this before. It is a 6 day pack and I am now on day 4 and while the rash is gone, nothing else seems better. I don't know if that is contributing to my emotional state but I clearly need to get it together. I hadn't taken a Xanax in 4 1/2 years until a few weeks ago and now I need a few day to deal with this anxiety. Actually, it isn't really helping that much. I don't know what else to do at this point.
Between the possible MS diagnosis and probable TN, I am terrified. Does anyone have any experience with TN and does it come and go with MS? Will there ever be relief or normal sensations in my face? I think this is Atypical TN because it is the dull boring ache with occasion nerve pain. I am trying to stay on top of my vitamin supplements, but I am not eating that much and have lost about 12 lbs in the last 2 to 3 weeks. I could stand to lose some weight, but I didn't want to do it this way. I am so very inspired in hearing all of your stories and the courage you have to fight your battles. I always considered myself a strong person and this for sure has changed my mind about that.
Lastly, does anyone have any info regarding neuro doctors in the CT area? I don't know if I should put all of my eggs in this one basket at Yale?
Thanks again for your help with this. What a great bunch of people you have in forum.
I started meds with the Lyme doctor just to see if I had a reaction and I broke out in a rash all over my body. That was very strange because I had taken the Biaxin and Plaquenil combo for quite awhile previously with no adverse reactions. Actually, that is what made me feel better years ago. So the doc had me stop them and take a prednisone pack and I have never done this before. It is a 6 day pack and I am now on day 4 and while the rash is gone, nothing else seems better. I don't know if that is contributing to my emotional state but I clearly need to get it together. I hadn't taken a Xanax in 4 1/2 years until a few weeks ago and now I need a few day to deal with this anxiety. Actually, it isn't really helping that much. I don't know what else to do at this point.
Between the possible MS diagnosis and probable TN, I am terrified. Does anyone have any experience with TN and does it come and go with MS? Will there ever be relief or normal sensations in my face? I think this is Atypical TN because it is the dull boring ache with occasion nerve pain. I am trying to stay on top of my vitamin supplements, but I am not eating that much and have lost about 12 lbs in the last 2 to 3 weeks. I could stand to lose some weight, but I didn't want to do it this way. I am so very inspired in hearing all of your stories and the courage you have to fight your battles. I always considered myself a strong person and this for sure has changed my mind about that.
Lastly, does anyone have any info regarding neuro doctors in the CT area? I don't know if I should put all of my eggs in this one basket at Yale?
Thanks again for your help with this. What a great bunch of people you have in forum.
Tina -
You've had a heck of long rollercoaster ride for diagnosis!! Sorry, it has been so difficult, I had months of diagnosis nightmare, but cannot imagine years you've been thru.
When the spinal tap has been done are they testing for both o-bands for MS as well as the PCR testing for lyme dna? The blood testing for lyme is half bull, the best test is the PCR by spinal tap which actually detects lyme DNA even if the lyme is in a dormant state in your body. Went thru the lyme nightmare myself, I have 6 bands for past lyme exposure, but we have horses, so no shock there. Just because you were exposed to lyme thru the tick bite, does not mean your body did not naturally fight off the bacteria, which is what happened in my situation.
And having a negative spinal tap for o-bands is not a huge surprise even if you do have MS... there are multiple sources for the stats, but you will hear anywhere from 10 to 25% of people with MS have negative spinal taps. Part of the nightmare for the whole diagnosis process.
Between now and your next appointment, I would suggest keeping a dairy of everything you eat, weather, what you do, etc. Even tho I suggested to my first neuro that I thought food affected me, he kept poo pooing me too... but after starting a food log, it just literally jumped off the pages that everytime I had gluten, I would have a bad day with major symptoms. Since I've elminated gluten and lactose and until the heat hit, was feeling really good!
I am also a big advocate of supplements and vitamins, but won't get on my soapbox here... If you are open to supplements to help with symptom management, feel free to send me a message thru the site, won't bore everyone with that babble again :)
Not sure any of us can give you a single answer, but defintiely know you have a group here who will listen and care... please keep sharing and venting... having the support does help so you know you're not crazy or alone!
Hugs,
Jen
I'm sorry that you're going through this! It took 6 years between flares for me to be diagnosed and it was actually a bit of a relief because it finally proved that I wasn't crazy. I know November seems a long time off, but try to relax a little knowing that you have an appointment. Stress will definitely make your symptoms worse no matter what the cause.
Try to really take care of yourself because it will make you feel better to know you are being proactive about that. I know that there are quite a few of us that can't eat gluten. You might try experimenting with that and dairy as well. Acupuncture also eases some of my symptoms. It made me feel better to know that I was doing things to help myself that were in my control. It helped me to feel like life wasn't just spinning out of control.
Hopefully some of the suggestions help. I totally understand your frustration!! Unfortunately there are too many of us who are or have been in your shoes.
Hugs!
Chris
Try to really take care of yourself because it will make you feel better to know you are being proactive about that. I know that there are quite a few of us that can't eat gluten. You might try experimenting with that and dairy as well. Acupuncture also eases some of my symptoms. It made me feel better to know that I was doing things to help myself that were in my control. It helped me to feel like life wasn't just spinning out of control.
Hopefully some of the suggestions help. I totally understand your frustration!! Unfortunately there are too many of us who are or have been in your shoes.
Hugs!
Chris
Hi there,
I am sorry for what you are dealing with. I wish I had some great advice to offer, but I do not. I am kind of in limbo myself and I understand how frustrating it is.
I have read about TN and it sounds horrible. I hope you do not have that, but if you do, you will find a way to get through it.
I would keep a log of symptoms and take that with you to your appointment.
Best of Luck
I am sorry for what you are dealing with. I wish I had some great advice to offer, but I do not. I am kind of in limbo myself and I understand how frustrating it is.
I have read about TN and it sounds horrible. I hope you do not have that, but if you do, you will find a way to get through it.
I would keep a log of symptoms and take that with you to your appointment.
Best of Luck
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I also have a bad Cancer. At first it was really scary but I have learned like with MS I can freak myself out needlessly. Even it is not as bad as my imagination. I read things about Cancer and decided my case was hopeless and almost gave up. A little knowledge on the internet can be a dangerous thing. This is why Doctors are paid the big bucks to understand this stuff. I let them do the worrying as well. I have wasted too much time worrying needlessly. Which caused more pain.
If you have MS it is not the end of the world. I would not wish TN on anyone but they are making strides in pain management. Sometimes it is getting to the right pain Specialist. Neurologists are not all pain Specialists. I had horrible pain which my Neurologist thought was MS and it was not and it has gone away. I go to a pain Specialist but use little or no pain medicines these days.
Medicine is evolving. I have Primary Progressive MS, I have stage IIIc Ovarian Cancer, and few other unpleasant illnesses but I have good life. Even on my bad Cancer days I still have good moments.
The worst times of my life are when I project my fears on to things. Usually my fear is way worse than any reality. Usually I feel silly afterwards for working myself up. Last week I was in the hospital about a day away from death. My heart, kidneys, and bowels were lready to shut down. I was very sick. I did not have time to think about it so it was not so bad. I felt terrible physically but they took good care of me and I knew I would feel better again. A week later I am ready to take my dog for a long walk. The old me would have projected every bad thing on to the situation but I just took it one moment at a time. I knew my pain was time limited. It was today I am better.
Alex