LYMEPOLICYWONK: Misdiagnosis of Lyme disease as MS –MyLymeData Quick Bytes
This is the first in what I hope will be a series of “quick bytes” (2-minute videos) of some of the preliminary results we are getting from MyLymeData. You can choose to watch the video or read the blog. Today I am going to talk about what we are finding with misdiagnosis. Most of us know that Lyme disease is commonly misdiagnosed as chronic fatigue, fibromyalgia, or depression. But did you know that 20% are misdiagnosed with uncurable progressive neurologic diseases?
MyLymeData is the patient registry launched by LymeDisease.org in November 2015. We currently have 4000 people enrolled in MyLymeData. Our goal is to reach 10,000 enrolled so we’re well on our way. One of the things we are using MyLymeData for is to find out what is going on with chronic Lyme disease and we do this by asking the patients directly. This blog is based on data from MyLymeData.
We asked patients in the MyLymeData registry if they were initially misdiagnosed with another illness. Unfortunately, most of these patients report that they were initially misdiagnosed and roughly 20% of those with chronic Lyme disease were initially misdiagnosed with a neurologic disease. 14% of chronic Lyme patients report being initially misdiagnosed with MS and roughly 2% are misdiagnosed with other neurologic diseases, like ALS, Parkinson’s and Multiple systems atrophy.
Now you might think no harm/no foul—so long as they eventually correctly diagnose and treat the Lyme disease.
But that’s not true.
For one thing neurologic Lyme that manifests as these diseases causes neurologic damage, which may continue to progress until it is properly diagnosed and treated. Even with treatment, physicians report that previous damage may not be reversible.
And the treatments for infectious diseases are very different than those for diseases like MS. MS patients may receive steroids to suppress the immune system. But studies have shown that steroids are the last thing you want to give someone with an infection. That’s because when the immune system is suppressed, the infection is allowed to essentially run rampant. Patients with Lyme disease who are given steroids become very ill.
It’s important that with neurologic conditions in particular that Lyme disease be ruled out as a causing factor so that the proper treatment can be provided to the patient as early as possible to prevent unnecessary neurological damage.
Let me end by thanking the 4,000 patients who have enrolled in MyLymeData so far. If you have Lyme disease and have not enrolled in MyLymeData, please do so today.
Let us know your experience.
Please let us know what you think of MyLymeData Quick Bytes by posting a comment to this blog.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org. You can contact her at email@example.com. On Twitter, follow her @lymepolicywonk. If you have not signed up for our patient centered big data project, MyLymeData, please register now.
- April 19, 2016 at 4:58 pm
I was misdiagnosed hypothyroid and pericarditis, both resolved significantly when I took antibiotics for another condition. First incidence of pericarditis was 9 years ago. I have just begun Lyme antibiotic treatment. I do not have any neurological symptoms.
- April 19, 2016 at 5:23 pm
I could not answer what I was diagnosed with, as it was not listed, on the above survey. I was diagnosed with ulcerative colitis. I assume Lyme disease is passed by the mother. I was third generation. I could put 2 knuckles up the back of my grandmother’s brain because her brain was so shrunken. I have read that it takes about 4 generations, assuming no new infection, to work out. Being third generation, I was given tons of steroids for over 25 years. In my mid 50s, Lyme took over. I was fortunate to find a LLMD only 3 1/2 years later. On mostly IV ABX treatment, which should have been open-ended, 5-7 years, I did fine, then my treatment was jerked. Of course, I had necessary holistic and other treatment along with the IV ABX. Now I suffer 24/7 since 2009 apx. I am a very good test case, but nobody wants to listen. I hate the torture. I can no longer get treatment. There are millions more like me. The medical establishment is criminal, Denies symptoms and treatment. Unacceptable!!!!!!!!!!!!!!
- April 19, 2016 at 5:33 pm
Numbers would be much higher if Canadians were able to participate.
- April 22, 2016 at 12:13 am
Hi Cindy – I’m in the UK and I participated in MyLymeData anyway. So why not fill in the survey and state that you are in Canada. All info helps!
- April 20, 2016 at 9:31 am
This is a great step in teaching so many what Lyme Disease is and it’s symptoms that mimic so many other ailments…. Thanks from one that is trying to understand and learn more. Hope this will help so many……
- April 21, 2016 at 12:53 pm
I had progressive MS with no useless MS treatment. Instead I got great chronic Lyme care from an LLMD. After two-and-a-half years of Lyme care the MS process stopped and I was 90% better overall. I continued with great holistic care and antibiotic combinations so MS etc. wouldn’t come back.
This finding from MyLymeData important because there has never been proof for the medical sceptics that Lyme can cause MS. Yet MyLymeData shows a kind of proof. We can now say “Lyme can cause MS” in any skeptics face–even Wormser and Steere–and they’d be lieing when they replied that it can not. That’s because we can now point to MyLymeData and we can say, “See, see see!”
- April 22, 2016 at 6:13 pm
So extremely happy you are getting treatment, and seem to be doing better. Treatment works!!! Timely treatment works better.
- April 21, 2016 at 1:56 pm
I think the percentage is at least 70%…that small percentage of 20% is absurd. Untreated lyme turns into autoimmune diseases in time…that IS what happens. It is a normal response to having spirochetes corkscrew their way into cells and having a normal immune response turn ugly as the body fights itself…
I have born witness to people going from a small course of antibiotics for lyme into a diagnosis of parkinsons by a doctor who ‘does not believe in lyme disease.’
Idiot doctors who know nothing about lyme disease, yet arrogance prevails and they get away with this medical malpractice…they are uneducated and so the patients suffer horribly…a nightmare world we are living in with this epidemic raging with few doctors knowing a damn thing.
- April 21, 2016 at 2:02 pm
I think the wording on the questionnaire should have left out “initially,” because people like myself may have started treatment for lyme (late) but still been told that a subsequent presentation was one of these neurological diseases, like ALS.
There are more than a few than have been given dual diagnoses, and since lyme symptoms can so closely resemble the other neurologic condition, patients can be pulled in two directions. It takes a lot of will power to resist this, and not every patient is medically sophisticated enough to realize that the lyme treatment could still help.
- April 21, 2016 at 2:23 pm
I started with drop foot in my left leg 7 years ago. I am now in a wheelchair most of the time. My fingers shake and I have lost 30lbs. It took 3 years before someone suggested I get tested for Lyme and it was a positive Lyme culture. Before that I had MRI’s of my brain, spinal taps, myograms, muscle biopsies, 5 EMG’s and everything came back negative. When I mentioned Lyme to the neurologists they said “there is no Lyme in California”. I was a firefighter and came home from several brush fires with tics buried in my neck and legs. Now it’s pretty evident that it’s in this area too, I have several friends with it.
I have been treated with different IV antibiotics ever since. Also IVIG.
I think the progression is starting to slow. I get stem cell treatments out of the country and pulse heavy antibiotics 5 days a week. I am still very tired most of the time and have my good days and bad days. Yesterday the doctor “in another country” showed me that they did not see any bacteria in my blood. Thats the first time! It needs to not show up for 3 months before he will consider a break from the antibiotics.
Even through I may get rid of this bacteria eventually there is no guarantee I will get my legs back, only time will tell.
Keep up the fight!!!!!!
- April 23, 2016 at 8:36 am
Foot drop can be reversed. My dad was a doc who treated a patient who’d been dx with MS and hadn’t been able to take a shower by herself or walk without aid for over 10 years. After antibiotic treatment she showered independently and was able to walk around construction sites with no problem. Keep up
- April 21, 2016 at 2:29 pm
Finding a good Lyme doctor is hard. Thankfully I found one less than fifty minutes where I live. Antibiotics are tough on the body but it’s well worth it. If you feel like you might have Lyme please make a effort to be correctly diagnosed.
- April 21, 2016 at 3:43 pm
My family practice Dr. thought my symptoms might be MS, but I was actually diagnosed eventually with early onset Alzheimer’s disease, because I ended up with dementia from my Lyme. Luckily for me, my body did finally fight back the neurologic Lyme disease enough for me to return to work after six years. I was not diagnosed with Lyme disease for another 10 years.
- April 21, 2016 at 5:31 pm
I was misdiagnosed with ms in 2001; diagnosed with Lyme in 2015. The website for the National MS Society did not have information about Lyme in past years. They do now and it is inaccurate: http://www.nationalmssociety.org/Symptoms-Diagnosis/Other-Conditions-to-Rule-Out/Lyme-Disease
Can someone representing lymedisease.org please contact them so that people like me can learn their true diagnosis sooner?
- April 21, 2016 at 5:53 pm
I believe that the neurological diagnoses that you name, such as MS, are not diseases at all, but symptoms of disease. There is, to my limited knowledge, no proof of disease cause in such cases.
I believe that such neurological symptoms are all caused by L-form (or cell-wall deficient bacteria). It seems to me that all diseases would have a catalyst. I have been misdiagnosed with a number of auto-immune, or neurological diseases, and when I researched each one, I found that nothing was really known about how they developed or what (in any meaningful sense) caused them. The diagnosed disease seems instead to be just a group of symptoms.
It may be that many people being diagnosed and just accepting the diagnoses and the crazy allopathic industry’s treatment plans are really in need of treatment for the pathogens that have caused their symptoms.
- April 21, 2016 at 6:25 pm
I was told that I had Lyme when I really had heavy metal poisoning. I did a detox and all of my symptoms went away ☺️
- April 26, 2016 at 6:02 pm
I do believe the symptoms can be similar. Metal poisoning can make your body opportunistic for Lyme though. I did tissue tests on my own, and they came back positive for all Lyme tests done, plus a bunch of other bad pathogens. I am so extremely very glad you have recovered. And may your recovery last until you die just because you body wears out from extreme old age. Cheers!!!
- April 21, 2016 at 6:28 pm
Where or who are some doctors who treat lyme disease? My brother was diagnosed with MS and found out about a Dr in Washington DC who thinks he may have lyme disease. He wants $39 thousand upfront to treat him for lymes but has not said you for sure have it. We don’t have that kind of money. My brother needs help now. He has 6 brain lesions and the last MRI showed a new one. He is changing and I want to find him some help before there is none of my brother left.
- April 21, 2016 at 9:11 pm
Tha is a lot of money, there are m any LLMD out there that do not charge
fees like that.
- April 22, 2016 at 6:25 am
Look up the list of Lyme Literate Doctors via the website van ILADS. Not to be confused with ISDSA. They are around here and there. Succes finding someone. I live in the Netherlands or I would be glad to help.
- December 20, 2016 at 12:49 pm
My husband and I have been successfully treated at Sierra Integrative Medical Center in Reno. It is moderately expensive, but we are now in remission. It is truly wonderful to have our health back.
- April 21, 2016 at 10:53 pm
I have been Misdaignosed for the past 25 years!!!
I have spent a fortune, looking for a cure, to no avail. I suffer from severe depression and anxiety! I am foggy, severely exhausted and fatigued, body ache, digestive issues, constant headache, watery eyes just to name a few!!!! I live in Orange County, Ca. Is there a doctor that can treat Lyme!!! I know I have it for many years and have gone to at least 20 doctors, with zero success!!!
Please help!!!! Thank you
- April 22, 2016 at 6:19 pm
So sorry you have suffered so long. Just my experience, but I think I was born with it, 3rd generation. So I lived into my mid 50s before it took over. Treatment with IV ABX put symptoms into remission, but when treatment was jerked, I started relapsing. Treatment apx 7 years. Treatment jerked 2009, slowly relapsing every since. I hope and pray you get treatment with whatever works for you.
- April 26, 2016 at 8:01 pm
Find a Lyme support group near you (track it down on the Internet with a search by typing your state + Lyme or city + Lyme.) Contact them and ask by email, phone or in person, what LLMD’s (Lyme-Literate MD’s) others in the group see–and why they see that LLMD. Most all LLMD’s are on the East coast of the US with some on the West coast.
- April 27, 2016 at 4:38 pm
There is a Lyme Support group in Orange County , that meets in the Lake Forest
Library once a month,
- June 14, 2016 at 1:30 pm
My hubby is positive Lymes also now Vitamin b12 deficiency with MTHFR genetic mutation A1298c he has memory loss,depression,frequent falls due to peripheral neuropathy in both legs,blood clots in legs as well as lungs,heart failure.His MRI showed SACD ..Lyme disease does cause irreversible nerve damage but supplimenting with injections of vitamin B12 can assist repairing nerve damage .B12 deficiency is being misdiagnosed worldwide for Alzahiemers MS,dementia,Parkinsons,,autism.Without accurate treatment disability leads to death.Check b12awareness.org for facts.
- April 22, 2016 at 5:31 am
This is so sad I was diagnosed with a spider bite by my MD & giant hives by a PA when I broke out with a quarter size blotched rash on my chest. My friends who have a degree in epedemolgy [sp] saw the rash & said it was erethema [sp]margins . the rash associated with lymes they called the PA who gave me predison [I only took 2 doses tapered right off & went on Doxy for 30 days. I must say on the predison the ras started to spread & the quartwer size got as big as soft balls. They started to fade immediately with the Doxy. I must add health care professionals need more education on Lyme’s.
- April 26, 2016 at 5:52 am
I couldn’t answer the questions accurately as although I wasn’t necessarily “diagnosed”, however, – I was tested for MS as well as Rheumatoid – Initially tested for lyme (band 23 came back postive in igm) – but doctor claimed not positive – however tested a few weeks later by natropath – band 41 and 23 came back positive igm – cdc positive – and my general practioner still claimed that it wasn’t positive. I am not sure why he tested me at all for lyme if he doesn’t think the test is positive. GP Did give me 4 weeks doxy – all symptoms resolved by end of 4 weeks, however I needed more doxy before I could see LLMD – (another 4 weeks) – however my general practioner would not give it to me. I even educated/convinced my gp to order a culture test (came back positve – but a little too late unfortunately). All symptoms reappeared – got worse (treated by llmd with antbiotics/iv/etc. )and 4 years later still fighting this incidious disease. I think that if I was able to continue to be treated without lapse for an extended period of time, my outcome may have been different. My intial symptoms: VERY sore/achy neck/shoulders arms (couldn’t lift), progressed down back to legs (upper thigh) facsiculations upper right thigh/muscle atrophy – began falling – couldn’t walk up stairs/or get up from seat/car without falling, neurological delays (slow/brain fast, but slow body response). All over a 6 week period from initial onset – when falling – called dr. asap and the process began. On 4th week of doxy – all symptoms resolved and felt great. 2 weeks off doxy symptoms reappeared – not as intense at first – but more neuro symptoms continued – double vision, brain fog/memory lapse, misspellings/wordsearch, slowed speech, unable to interpret what people were saying, unattached from brain to body feeling in getting up in the morning, unmotivated/decrease in spiritual connection – all things NEVER experienced before. SPECT scan showed decrease in blood flow to major areas of brain. IV abx 7 months – felt great! on/off treatment/symtoms for remaining 3 years. Resolved to lifetime of on/off maintenance treatment and NEW “normal” of expectations.
- May 24, 2016 at 5:14 am
Before I was diagnosed with tick-borne disease, seven doctors over two years suggested MS, chronic fatigue syndrome, depression, sleep apnea, and IBS. My symptoms are typical for neuroborreliosis and I live in Maine. Thankfully, I see a wonderful LLMD and oral antibiotics are helping.
- November 26, 2017 at 7:31 pm
Hi Autumn, I’m in maine too. Could I message you?
- May 29, 2016 at 1:48 pm
4 Years ago I was diagnosed with MS (primary progressive; no Schubs). A year later I was diagnosed with Lyme in blood and liquor. That liquor test confirmed the diagnosis MS again, apart from the Lyme disease!
So, in my case it seems not a misdiagnosis, but a missed (!) diagnosis in the first place.
Treatment of the Lyme did not give any result, so the conclusion of the neurologist was: you suffer mainly or only from your MS.
- May 29, 2016 at 7:32 pm
My opinion only. Your neurologist is nuts. My opinion only is that you suffer primarily from Lyme. My balance was very bad. I could not get up off the floor. Lots of other symptoms. Lyme treatment let me be “normal.” No conventional doctor wants to say your primary problem is Lyme. If a conventional doctor, neurologist or not, is not a criminal and only working in criminal establishment medicine, the doctor never wants to say Lyme (infections) is the problem. After all, they are taught that ABX is bad for you. They will let you suffer and die, and say they “did no harm,” but will not treat a very treatable disease. My treatment was jerked, and then I did badly. Again, I was “normal” on treatment. Unacceptable!!!
- July 12, 2016 at 5:32 pm
I was diagnosed with MS in Canada in 2005. I had pretty well every symptom in the book except incontinence, pain and my legs weren’t numb. It was awful. When I tried to get tested for Lyme disease (LD), my neurologist told me there is no LD in Canada and since I trusted him I believed but then every time I did research online I kept encountering LD stories. After the 3rd time asking my neurologist to get tested, well over 4 yrs later, he allowed me as long as I promised to see a psychiatrist, so I did. The psychiatrist dxd me as being delusional since I thought I had LD when the real dx was MS…brilliant move on the part of my neurologist…now I looked like a quack. But when I asked for a paper result of my Lyme tests, the hospital called and I had to site the FOIP to get them to send me what turned out to be a paper with only 4 words including LD and negative. I was also asked to never return to that neurologists office (now that he made me look crazy he could send me and my chart to the next Dr…
I finally talked my family Dr into signing for the Igenex test. I think she did it to shut me up. The results were CDC positive (by a lab that is both accredited and has experience diagnosing LD, unlike Canadian labs). The look on my Drs face was priceless lol. But even with the positive results she refused to treat me for fear of losing her license. After 2o years she is no longer my family Dr.
I took my positive results to over 25 Alberta Drs and not one would consider the possibility of LD because their big black book of medicine says no. I don’t blame them though since they were taught to be robots for big pharma…the group that writes the textbooks used in all the medical departments in all the universities around the world. Big pharma refers to pharmaceutical companies (that have raked in a whopping 1 trillion dollars in one year but that’s another story: http://www.globalresearch.ca/the-evils-of-big-pharma-exposed/5425382).
In the end I was forced to do my own research and then to accept the meds that I needed from friends I have never met before (bless their hearts and crazy to actually experience big pharma’s control over treatment, wow). And then one day I found a Dr in another province that was willing to help me. I got the antibiotics that I needed and some herbal meds as well. Now over 10 years after being diagnosed with MS, I am preparing to go back to work, haven’t had a single MS episode for years. My new neurologist says I have “benign” MS…zif.
I have to admit that treatment was harsh and long. I didn’t get better overnight, that’s for sure. The herxheimer reactions (herx) almost scared me into stopping but the support of other sufferers and the knowledge that I was going to get my life back made it bearable. For those that don’t know, the “herx” is where the toxic dead bacteria cause a symptom flare, google it.
I am still in the tail end of my treatment and am feeling great for the most part. Instead of living in an assisted home I am applying for jobs, excited to get back into the swing of things, happy to be rid of the so called MS, life is good!!
- July 31, 2016 at 9:13 am
My sister was bitten by a tick 1997. She was then diagnosed around 2003 with ALS, EMG was positive. Now I have heard that untreated Lyme Disease can be misdiagnosed. My question is, could a positive EMG show up if it were indeed untreated Lyme? I’ve never read that an ALS patient can loose muscle control then get a little better. She has lived a long time with ALS now, and most do not last this long. So now I have to wonder if it could be Lyme, and if it would still show up in bloodwork.
- July 31, 2016 at 1:54 pm
My main question is, those misdiagnosed with ALS; did they have a positive EMG?
- August 1, 2016 at 2:21 pm
I had 5 EMGs, none of them came back as “positive” for ALS. But from what I was told, that was not
a POSITIVE indicator of ALS anyway, it’s just a tool they use. I am in a wheelchair, I was finally diagnosed with
Lyme via culture test 4 years ago. I have been battling symptoms since 2008. I am not getting better after tons
of antibiotics, but still hopeful it kicks in. I do think it’s slowed down the progression though.
Hope that helps your question.
- October 4, 2016 at 5:46 pm
I was misdiagnosed as being bipolar
- November 17, 2016 at 7:34 am
I was bite in Missouri by 2 seed ticks in May of 2016. Two weeks later had a stiff neck that never went away, Then I woke up with a swollen right knee and acute arthritis in my left hand. started having neuropathic pain both both lower legs. I am a EMT-P through my research I concluded I was infected with lyme disease. Self medicated my self with 500 mg of Amoxicillin BID. Went to my personal Doctor Gregio Tambone D.O. told him what I thought he did a ALISA and Western Blot blood tests,and gave me 875 mgs of Amoxycillian BID. Both came back with a false negative. On August 11 I had a 12 lead EKG on me at my Fire House. Had Atrial Fib and Second Degree Heart Block Wenkibock. I was admitted into St Luke’s Hospital in Chesterfield MO. for A Fib and placed on a telemetry ward. I asked for a infectious disease consult. Addtional blood Lyme Disease ordered Had a Consult wit Dr German who was animate tha I did not have Lyme Disease . I disagreed with him based on my symptons and that the blood test was merely a false negative. My heart condition progressed from A Fib to Third Degree Heart Block . Diagnosed with Idiopathic Carditis by a Cardiologist and had a on demand pacemaker installed by Dr, Ron Lidenfrost. Ten days later I saw the Cardiac Surgeon to have steri strios removed. The person who prgramed the pacemaker during the install checked the functionality of the pace maker and was astounded that I was back into Normal Sinus Rhythm, He indicated to me that the pacemaker is NOT firing and he has never seen any one go from third degree heart block back to NSR. I am Convinced that I had Lyme Disease !!! and was misdiagnosed. I was told over and over again ther is NO lyme disease in Missouri. To that I say Bull. Kerry Tebbe
- December 20, 2016 at 1:02 pm
Lyme is in all 50 states. I suggest you watch the documentary, “Under Our Skin”. I believe you can view it on YouTube, for sure on Netflix.
- December 21, 2016 at 3:33 am
Excellent suggestion my friend let me watch the video “Under my skin” I was misdiagnosed by me doctor & then a PA Our friends who have degrees in epidemiology diagnosed my rash [a flat blotched rash on my chest.] as erythema margins [sp] a lyme’s rash. I immediately started to take Doxicline [sp] for thirty days & tapered off the predison [I only took two doses the Pa prescribed] My friends saved me from the terrible side effects etc of Lyme’s. i have contacted senators etc in our state to try to get something done. No surprise it to no avail. I live in the Poconos of PA there are dozens of deer in our yard.
- December 30, 2016 at 1:50 am
I was diagnosed with rheumatoid arthritis and given Celebrex.
- December 30, 2016 at 10:58 am
And then we have another possibility: I have MS (primal progressive) AND Lyme. So there is not a misdiagnosis, but a double diagnosis, although this form of MS according to some people is the same disease as Lyme…
My neurologist says that some values in my blood and brain liquid speak for MS, while other values say that it is Lyme. I don’t get any treatment for MS and tried some treatments against the Lyme, but with no result (after 15 years after the infection!).
- January 3, 2017 at 10:16 am
I had progressive MS and Lyme, too. (See my comment way above) You wrote, “So there is not a misdiagnosis, but a double diagnosis, although this form of MS according to some people is the same disease as Lyme … ” Some LLMD’s believe that is true. Some don’t. I think it’s true, as you do. I think MS is discriptive word, a collection of signs and symptoms. I also think that not all MS or progressive MS is caused by Lyme, but a lot of it is. The biggest problem I have with the conventional diagnosis of MS or progressive MS is that they refer to it as “autoimmune disease.” However, there is no proof that autoimmune disease exists–the early study decades ago were wrong. In fact, in recent years, the very definition of “autoimmune disease” has changed drastically so that it no longer has any related definition to what the term “autoimmune disease” was. Apples are now elephants? Nope. I think the reason the term “autoimmune disease” survived because Big Pharma marketing revived it as the perfect sales pitch, like this: “There is no known cure for the well over 80 “autoimmune diseases” and there won’t be in your lifetime so take these (expensive, damaging, useless) Big Pharma drugs (there is little profit for us in antibiotics) and shut up.”
Seeing a genuine LLMD for a good while will help you. Later you can see a holistic doctor to further help you with complications large and small and with related complications of progressive MS. If you can afford it, I suggest seeing both at the same time. Hope is real!
- December 31, 2016 at 4:05 am
I had something on my left [back] shoulder on Friday I ahad a MD”s appointment asked her what it was she said looked like a spider bite. On Tuesday I woke with a quarter size blotched rash pon my chest [EM} went to PA at a urgent care he said it was giant hives gave m e predison the rash got bigger & spreading. [only took 2 doses. On Thursday I had lunch with my 2 friends who have degrees i n epidemilogy [sp] they said it was EM [Lyme’s rash] she called the PA ordered Doxie for 30 days immediately the rash started to fade. Throughout all of this my symptoms were I was very tired & just did not feel well. The only thing I seem to have is tingling in my fingers & I get agitated quickly. I don’t know if this is related to the tick bite Lyme’s or not.I feel my friends saved my life My husband & I took them to dinner as a thank you.
- January 3, 2017 at 2:57 pm
I had the bulls eye rash on my leg a number of years ago, and immediately was given a short course of antibiotics, as I recall it was only 7 days. We never performed a blood test. I think is was about a year later that I started noticing that my walking gait was strange, and began to notice tingling in my leg during rigorous exercise. I waited about a year before I sought diagnosis.
A neurologist determined that it was MS after an MRI and spinal tap. The MRI only showed one definite plaque on my spinal chord and no plaques appeared on the brain scan.
The lab testing the CSF reported that 2 oligoclonal bands were observed. I don’t understand what that means, but the report continued to say four or more present was consistent with a diagnosis for MS.
Four years later, I have not developed any new symptoms, last MRI showed no progression.
I still have drop foot, but does not seem any worse after four years, I have only taken medications for MS for a few months, but stopped because I felt the medications were also a risk to my health, although I did not suffer any side effects.
The blood tests taken at the time of the original diagnosis came back negative for lyme.
Is it possible that the damage occurred from the lyme infection, is permanent, but may not progress?
- January 19, 2017 at 4:49 am
Although I test positive for lyme, I do not know if I also have MS. I probably had lyme for about 20 years before I was diagnosed with it. My symptoms can be either from lyme or MS, or both. It would be helpful to know how many people had brain spect imaging done to distinguish the two, and how long they had symptoms before finding out they had lyme. Brain spect imaging is extremely expensive and very few know how to use the test to distinguish the two. It took me about 8 neurologists before I found one willing to tell me that the type of MS I may have is called primary progressive, and there is no drug for that type. I have since heard that they are not sure that that type is MS. Only two of them would consider the possibility that it might be lyme, and both of them were near retirement age.
- September 16, 2017 at 8:50 am
I have been diagnosed with Parsonage Turner Syndrome, but they told me all they can do for me is pain control.
Two years ago between April and July I had 18 tick bites. 1 with bullseye rash. Finally in May I was scheduled for a page full of stuff, 1 test was a basic Lyme test which came back negative.
Although I have a diagnosis no one including my family Dr. And 2 Neurologists that made the diagnosis have been able to tell me about this disease. I was told to Google it.
So I did that. There is a lot about it getting better in 6-12 weeks and I’ve been suffering since April and was told I was at the chronic wasting stage, out of 8 Web pages only 2 mention the wasting in one or 2 sentences at the bottom. Although the neurologists agreed on diagnosis I’m still looking for someone to explain this disease and give me a prognosis.
- November 27, 2017 at 3:02 am
I told my story a year or more ago. I had a bite behind my left shoulder i could not see I asked my MD she said it was a spider bite. Three days later I woke with a quarter size flat blotch rash on m y chest. Also I was extremely tired. [I have now learned it was erythme margins [ one of the lyme rash’s] so I went to Urgent Care he said it was giant hives [I am a retired nurse I never heard of giant hives] he prescribed Predisone [sp] the rash got bigger in size & spreading [I have now learned steroids feeds the spirochete that cause Lyme’s] I only took two pills when my friend asked to see the rash & said it was the Lyme rash. She called the PA at urgent care told him what it was [she knew him] He prescribed Doxicycline [sp] immediately the rash started to fade & go away.God bless Lorraine Johnson for all she does for Lymes.
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