Aa
Diagnosed with probable MS but think its lyme
** was bit by 3 ticks in the spring 2 lil tiny black ones and a bigger gray one (MS specialist didnt care says it rare for where i live even though i live rith beside the woods!)
** didnt pay attention to any rashes or anything didnt cross my mind
** very first symptoms bad chast pain and rib pain and lower ab pain ( i actaully thought i was pregnant for a good month) told the ms specialist about this and they dont consider it a symptom and said " i should get that checked out" since it dont fit their profile of their disease specialty
** then came headaches horrible headaches alot of fatigue and restlessness still the same pain and groin pain and once again ms specialist dont consider that a symptom since it dont fit their profile (groin pain)
** then maybe a month and half later came a numbess startting to creep up wich inturn turned in full blown out numbess of the right side and alot of other problems....this been going on off and on for 6 months now had 2 more relapsed in this time
** started interferons for ms and i feel well i know cause its my body i been getting worse and relapsed twice when started interfons and more symptoms.
All the sympoms for probable MS also fit the ones for Lyme disease Here are the ones i have that they say DONT FIT MS.... and dont care about to look into anything else. I had an MRI ( 2 lesions wich lyme can cause too) that was it they didnt even try to rule out anything else I just dont feel that this medicine im taking is doing good for me and they should be wanting to rule out everything since they cant even say its definate ms
Chest, rib, lower ab pain
chronic back pain
chronic neck pain
neck always stiff
everytime i stretch a crack snap and pop lol my bones never cracked before all this mainly neck upper back
constant neck tremoring and upper body twiching
need to HAVE to sit down or lay down like i have to no if whats or buts about it
i lose my breath and have a hard time breathing quite often
i get electricl zap in my hands ( im not sure if that is ms also)
those are the few i have that dont fit MS and they wont pay attention..i insited on a lyme disease test wich they seemed insulted and really didnt want to give me it but he did... came up negative then read if you take steriods for ms then get a test the test will be wrong and i did...and also it usuly takes alot of test cause lyme is hard to detect? Any insight would be great im just sick of readon papers of the interent and would like to here from real life people living with this disease....i did do a lyme checklist and i have 59 out of 71 that match Main Question should i find a lyme disease specialist and will he take me serious even if i never notcied a rash and do they test repeativly and theoroly cause of all the false neg. and false pos. ? i just dont understand how they can say i have PROBABLE MS and not want to rule out everything! pisses me off i tell u
Hi all, I know I was missed :) Erin you really have to find an LLMD. Most Dr's don't like to listen to anything that has to due with 'Lyme Disease'
As my new physician put it... Lyme disease is an 'antiquated disease that our immune systems should be prone to fight.' Of course he is one that really considers Lyme to be a HOSTILE and progressive disease.
I have had all your symptoms and then some. All my Lyme testing came back negative, that doesn't mean I don't have it. It just means that we are looking for a different diagnosis now.
I am one of the lucky ones, My Dr knows and understands Lyme (took me writing letters to every doctor in and around my area to find one who was willing to work with me/take my case). He has also managed to form a diagnostic team for me. I know the answer will be found.
For you...You really need to find an LLMD. There are some great ppl on here that will probably be willing to help you.
As my new physician put it... Lyme disease is an 'antiquated disease that our immune systems should be prone to fight.' Of course he is one that really considers Lyme to be a HOSTILE and progressive disease.
I have had all your symptoms and then some. All my Lyme testing came back negative, that doesn't mean I don't have it. It just means that we are looking for a different diagnosis now.
I am one of the lucky ones, My Dr knows and understands Lyme (took me writing letters to every doctor in and around my area to find one who was willing to work with me/take my case). He has also managed to form a diagnostic team for me. I know the answer will be found.
For you...You really need to find an LLMD. There are some great ppl on here that will probably be willing to help you.
You live in a lyme endemic state which the neurologist should be aware of. I have had just about every symptom you mentioned and have repeatedly tested negative for MS. I would see someone who specializes in lyme for an evaluation.
PS-and you may have already heard this, I would suggest seeking out an LLMD who is a ILADS member. "LLMD" is really a patient-defined term, it does not reflect formal training or certification. It's not fail-safe, but at least ILADS membership offers some sort of check.
If possible, also seek patient reviews. The Lyme community is pretty active in keeping tabs on docs, you just have to dig around a bit as no one wants to post details openly.
If possible, also seek patient reviews. The Lyme community is pretty active in keeping tabs on docs, you just have to dig around a bit as no one wants to post details openly.
Thank you agian for your insight! I got my notebook out and am writing whatever i can learn so i can be prepared.. My appointment is this Tuesday coming up and I registered to one of those website i was told about on here to find a LLMD in pittsburgh...I tryd google and everything else but i do see now how they really do keep a low profile. So hoping to here back from one of them soon. I'm going to go into this appointment hoping they are nice and demand the tests and that they go through Igenex if possible. Thank you all so much for the support and i'll let you know how it goes!
Well, there are two major organizations that post guidelines for the treatment of Lyme Disease. the Infections Disease Society of America (IDSA) has their guidelines, and the International Lyme and Associated Diseases Society (ILADS) has their own. From diagnosis, to treatment, the guidelines are very different. The guidelines the CDC (Center of Disease Control) supports is that of the IDSA.
Most doctors that treat based on ILADS guidelines hide under the radar and usually can't take insurance as insurance companies simply won't pay them. Doctors also fear of losing their license if they treat under guidelines that the CDC (government) and insurance companies don't endorse. A few states (such as Connecticut, Rhode Island, and California) have passed bills to protect physicians that use different guidelines to treat Lyme Disease.
That being said, since this doctor takes insurance and is probably a standard Infectious Disease Doctor, I think it's fair to say he/she may downplay the probability of you having Lyme Disease. If they suspect Lyme Disease, they will probably give you 28 days of doxycycline at the most. If they give you antibiotics with little to no success, they may try to tell you that you may have post-Lyme Syndrome. They consider this an autoimmune disorder, and it goes untreated. The current IDSA guidelines state that "There is no well‐accepted definition of post–Lyme disease syndrome." In other words, under the current guidelines, we really don't understand the disease very well.
Based on your symptoms, location, and tickbite, there are many ILADS doctors that will treat you even if you test serologically negative. It's a good idea to rule out other pathological causes of your symptoms, but if nothing is found, I would definitely seek an LLMD. Even if the ID doctor treats you, I highly doubt that 28 days or less of doxycycline will do anything for you considering how long you have been symptomatic. I think many others here will agree.
Most doctors that treat based on ILADS guidelines hide under the radar and usually can't take insurance as insurance companies simply won't pay them. Doctors also fear of losing their license if they treat under guidelines that the CDC (government) and insurance companies don't endorse. A few states (such as Connecticut, Rhode Island, and California) have passed bills to protect physicians that use different guidelines to treat Lyme Disease.
That being said, since this doctor takes insurance and is probably a standard Infectious Disease Doctor, I think it's fair to say he/she may downplay the probability of you having Lyme Disease. If they suspect Lyme Disease, they will probably give you 28 days of doxycycline at the most. If they give you antibiotics with little to no success, they may try to tell you that you may have post-Lyme Syndrome. They consider this an autoimmune disorder, and it goes untreated. The current IDSA guidelines state that "There is no well‐accepted definition of post–Lyme disease syndrome." In other words, under the current guidelines, we really don't understand the disease very well.
Based on your symptoms, location, and tickbite, there are many ILADS doctors that will treat you even if you test serologically negative. It's a good idea to rule out other pathological causes of your symptoms, but if nothing is found, I would definitely seek an LLMD. Even if the ID doctor treats you, I highly doubt that 28 days or less of doxycycline will do anything for you considering how long you have been symptomatic. I think many others here will agree.
Thank You all soo much for your replys! I woke up this morning thinking i might just be crazy questiong doctors! But now i see there are many that went through what i am and many doctors who arent so nice!....I have some hope today but still understand it could stay at probable ms...but now got the knowledge for the test to back up what im going to insist to get and get a LLMD.
You asked the evidence i have...only one mri scan that showed 2 lesions not sure where and thats it and the symptoms
I was only diagnosed in july 14th of 09 and have relapsed a total of 3 i said 2 before meant 3 ...my last to was sept 5th lasted a week...then oct 3rd lasted a month.....but since it wasnt exactly 30 some days apart the doc said its not considered 2 replases wich would of gave me a definate diagnosies.
new update : my mom just walked in the door and told me she got and infectious disease doctor since thats all me insurance covers will that be good for now? or should i go for the llmd?
You asked the evidence i have...only one mri scan that showed 2 lesions not sure where and thats it and the symptoms
I was only diagnosed in july 14th of 09 and have relapsed a total of 3 i said 2 before meant 3 ...my last to was sept 5th lasted a week...then oct 3rd lasted a month.....but since it wasnt exactly 30 some days apart the doc said its not considered 2 replases wich would of gave me a definate diagnosies.
new update : my mom just walked in the door and told me she got and infectious disease doctor since thats all me insurance covers will that be good for now? or should i go for the llmd?
Hi and sorry that you are in this mess. MS and Lyme disease can be difficult to distinguish, and I was caught in that conundrum for a time. I overall agree with your partitioning of symptoms into what could be MS versus what seems unlikely for MS, and you understand that all of the above could be Lyme, and you also understand that a lot of doctors know very little about Lyme, so you arrive here as an advanced beginner!
If you haven't done so already, get your hands on the book "Cure Unknown" (P. Weintraub, $10 paperback recently came out or try library) and the film "Under Our Skin" (can be purchased online, can also watch a lot of clips for free on their site), and bookmark the website for ILADS (http://www.ilads.org/).
I can very much so relate to your situation. I didn't get to "probable MS," I was caught in the "wait and see, we'll repeat your MRI every 6 months" boat. I was also told by every doctor I saw (which included 4 neuros, a rhuemy, and about a dozen office visits to my PCP in 2008) that I 100% did NOT have Lyme. I repeatedly tested negative for it on ELISA, and also my spinal fluid was negative.
What evidence of MS do you have? MS and Lyme can both be difficult to dx, and they can both cause some of the same test results. I had some MRI lesions, but my LP was clear. Lyme can cause white matter brain lesions that can look like those associated with MS. The pattern of the location can be different, and with Lyme, the lesions are less likely to enhance. I had non-enhancing lesions and while a few were in locations consistent with MS, the rest were "non-specific." When I began to have obvious joint involvement (not long after a steroid treatment), I knew it couldn't be a neurological condition and that's when I finally sought out an LLMD. I was skeptical, but figured why not try, since at least Lyme is treatable!
Like you, none of my docs took my concerns about Lyme seriously, and that is unfortunately a common experience in the Lyme community. I had to seek out a so-called LLMD. Advice for how to conduct such a search can be found here:
http://www.chroniclymedisease.com/llmd-referrals
If you haven't done so already, get your hands on the book "Cure Unknown" (P. Weintraub, $10 paperback recently came out or try library) and the film "Under Our Skin" (can be purchased online, can also watch a lot of clips for free on their site), and bookmark the website for ILADS (http://www.ilads.org/).
I can very much so relate to your situation. I didn't get to "probable MS," I was caught in the "wait and see, we'll repeat your MRI every 6 months" boat. I was also told by every doctor I saw (which included 4 neuros, a rhuemy, and about a dozen office visits to my PCP in 2008) that I 100% did NOT have Lyme. I repeatedly tested negative for it on ELISA, and also my spinal fluid was negative.
What evidence of MS do you have? MS and Lyme can both be difficult to dx, and they can both cause some of the same test results. I had some MRI lesions, but my LP was clear. Lyme can cause white matter brain lesions that can look like those associated with MS. The pattern of the location can be different, and with Lyme, the lesions are less likely to enhance. I had non-enhancing lesions and while a few were in locations consistent with MS, the rest were "non-specific." When I began to have obvious joint involvement (not long after a steroid treatment), I knew it couldn't be a neurological condition and that's when I finally sought out an LLMD. I was skeptical, but figured why not try, since at least Lyme is treatable!
Like you, none of my docs took my concerns about Lyme seriously, and that is unfortunately a common experience in the Lyme community. I had to seek out a so-called LLMD. Advice for how to conduct such a search can be found here:
http://www.chroniclymedisease.com/llmd-referrals
some of my first lyme symptoms was - very stiff neck and rib/chest pain [costochondritis] - joints cracking/clicking where I had never had this before - this all followed a 'tick-bite'.
I am not medically qualified - but I would say - you have lyme disease - if I were you I would find an LLMD. - A.S.A.P. - as 'kday' points out - lyme testing - especially the 'ELISA' test is unreliable.
It is hard sometimes when you feel so horrible to have to fight to get help but most of us here have been in your situation and I am pretty sure - after exhaustive tests - pig-headed doctors - etc,etc, - most of us found the best help from an LLMD.
keep us posted - will be thinking of you
Gorbs x
I am not medically qualified - but I would say - you have lyme disease - if I were you I would find an LLMD. - A.S.A.P. - as 'kday' points out - lyme testing - especially the 'ELISA' test is unreliable.
It is hard sometimes when you feel so horrible to have to fight to get help but most of us here have been in your situation and I am pretty sure - after exhaustive tests - pig-headed doctors - etc,etc, - most of us found the best help from an LLMD.
keep us posted - will be thinking of you
Gorbs x
I also forgot to mention you can find an LLMD (Lyme-Literate Medical Doctor) through Lymenet dot org.
If you click on Flash Discussion, and make a post under Seeking a Dr, there will be people there to help you find a doctor. I would avoid asking your current doctor for a referral, as they probably wouldn't know, and would probably tell you that you don't need to see an LLMD. It's a strange world we live in.
If you click on Flash Discussion, and make a post under Seeking a Dr, there will be people there to help you find a doctor. I would avoid asking your current doctor for a referral, as they probably wouldn't know, and would probably tell you that you don't need to see an LLMD. It's a strange world we live in.
Correction to my post above:
"Lyme-aware physicians argue that labs such as Quest/LabCorp have too many false negatives."
"Lyme-aware physicians argue that labs such as Quest/LabCorp have too many false negatives."
I've literally had all your symptoms at some point (but no MS) -- that includes the chest pain, the pelvic pain, the neck pain, the back pain, the rib pain, headaches, etc.
I tested CDC+ Western Blot and IFA+ through Igenex labs. I haven't had a western blot through a LabCorp or Quest, but many here complain they aren't good.
If your doctor ONLY gave you a ELISA test, demand a Western Blot. My ELISA was completely negative. Igenex labs of California specializes in Lyme testing, but they don't take insurance. Most lyme-aware physicians suggest testing through Igenex. Doctors who don't specialize in Lyme or don't believe that it is prevalent may not have heard of Igenex, or they may say their tests have too many false positives. Lyme-aware physicians argue that labs such as Quest/LabCorp have too many false positives. The battle goes on.
So, if you remember a tick (especially at the time you got sick), I would say there is a huge probability that you have Lyme disease. Even if you didn't remember a tick, based on your symptoms, I would still suspect Lyme disease. And, as you may already know, Lyme can cause MS, and MS patients can recover from Lyme treatment. You also live in a HIGH RISK state for Lyme disease. Out of all places, I would think doctors in states like PA would would recognize the threat of Lyme Disease. It's quite sad actually.
Disclaimer: I can't diagnose or treat you, but if you have Lyme, most doctors can't either. I would seek a Lyme Literate Doctor as soon as possible.
I tested CDC+ Western Blot and IFA+ through Igenex labs. I haven't had a western blot through a LabCorp or Quest, but many here complain they aren't good.
If your doctor ONLY gave you a ELISA test, demand a Western Blot. My ELISA was completely negative. Igenex labs of California specializes in Lyme testing, but they don't take insurance. Most lyme-aware physicians suggest testing through Igenex. Doctors who don't specialize in Lyme or don't believe that it is prevalent may not have heard of Igenex, or they may say their tests have too many false positives. Lyme-aware physicians argue that labs such as Quest/LabCorp have too many false positives. The battle goes on.
So, if you remember a tick (especially at the time you got sick), I would say there is a huge probability that you have Lyme disease. Even if you didn't remember a tick, based on your symptoms, I would still suspect Lyme disease. And, as you may already know, Lyme can cause MS, and MS patients can recover from Lyme treatment. You also live in a HIGH RISK state for Lyme disease. Out of all places, I would think doctors in states like PA would would recognize the threat of Lyme Disease. It's quite sad actually.
Disclaimer: I can't diagnose or treat you, but if you have Lyme, most doctors can't either. I would seek a Lyme Literate Doctor as soon as possible.
Have an Answer?
You are reading content posted in the Lyme Disease Community
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods
