Could it be Lyme Disease?

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July 7th 2014. Woke up fine went to work. A few hours later began feeling dizzy and totally out of sorts. Tried driving to get lunch thinking maybe too hot and hadn't eaten breakfast. It was 11 am. Didn't make it not one mile before numbness set in on lips feet and hands. Looked at my own hands and felt as if they were no longer attached to me. Started to deep breath to stay calm. Within 15 minutes was full blown numb and strange feelings I never had before. Called ambulance because at age 32 an independent fearless healthy hard working woman could no longer drive. At the hospital stroke like symptoms happened. No apparent cause. Legs numb and heavy, heart rate going up and back down with numbness and strange feelings of passing out. Was calm the entire time as a nurse I know darn well this wasn't an anxiety attack and if not calm they would dismiss it as such. They discharged me that day after waiting 3 hours for my heart rate to stop fluctuating. 30 second EKG fine of course. From that day I was discharged hardly able to walk. Face was tingling and numb. Two MRIs, 1 MRA, all cardiac tests from EKG to cardiac catheter all normal. ENT noticeable issues with eye movement in certain positions but no apparent reason. Fatigue unbelievable. Heart palpitations, headaches, blood pressure fluctuations dangerously high dropping dangerously low many times over half hour periods struggling to stay awake. Brain fog,memory loss. Forget my own sisters nam,getting lost on roads I've traveled for years. Forgetting where I wad even headed to begin with. Sleeping all day, tired all the time. They checked for MS. Nothing except unexplained arthritis through out back and neck. Deformities of back with no explanation. Severe irritably and mood swings. Menstrual cycle out of whack from day it started. Now under control. Severe back and neck stiffness. Chronic debilitating life altering dizziness, sense of imbalance, sometimes literally feel like im going crazy. Struggle everyday to function someday almost impossible others can be fought through. Found antibodies for hoshimotos thyroiditis. Normal labs so nobody will treat. Synthroid and natural dissected thyroid meds dont work when finally convinced doctor to try. Threw me right into some kind of cardiac episode. Gluten dairy chemical free diets no relief. Brain feels like it just doesn't want to function and haven't felt like im physically here anymore for years. Laying down helps only some of the time. Open areas scare me now. Afraid to walk across parking lots and physical exertion causes vision to go strange and fear of passing out. Blood sugars always normal A1C always normal. All labs have ever shown is sky high aantibodies, low vitamin D, and high inflammation. WBC counts high day one but have leveled back to normal. Spoke to a woman suffering from Lyme Disease today. She states she feels exactly this way and that her tests for it were negative for a year until they conducted the correct test. Could this be what is taking my life from me as well? ?? Could I really be so dizzy and off balance and almost delusional from Lyme? ??? I do not ever remember any tick bites or bulls eye rash. I currently have been suffering from a strange and severely itchy traveling rash for a month or two with boils here and there that leave then reappear. Does this ring a bell with anyone who has Lyme or am I looking for answers in the wrong place?

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  • Posted

    'Lyme disease' is a catch all name for a bunch of tick born infections. It presents in various ways there's no one size fits all. there are many stories out there about stroke like symptoms infact being neurological Lyme. Anyone with unexplained symptoms like yours should be being tested for Lyme. Have you been tested for all auto immune diseases etc... Make sure Lyme was not already done they may not have told you if it was negative. Ask for a copy of the results if it was. If not go to your GP and ask for a test due to the similarities with Lyme. Many people don't remember tick bites.

    If negative go to lab in Germany where most are going for there tests. There is a company you liase with in the UK to sort it, it's a very simple process especially if you are a nurse?

    If you have Lyme insist on IV antibiotics not a few weeks of doxycycline. You may have severe neurological Lyme it needs IV.

    Good luck

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  • Posted

    Hi Tasha so sorry to hear you've been unwell all this time with no definitive answer to your symptoms.

    My story is very similar to yours in that I was fit and well running half marathons, swimming, managing a good career until one day I woke up went to work and felt the same as you did on 18/05/15 and have never been the same since and never worked since. I have had every medical test known to man (there's too many to list) which all appeared normal until I got diagnosed of POTs in Jan 2016. After that I researched causes which threw up Lymes Disease so I followed that route and had some private testing done via an excellent German Lab which indicated I had a chronic infection may be Lynes (but my Lymes test was indeterminate). For me my diagnosis is still on going but I'm currently being treated for possible Lymes via my local ID dept.

    The odd thing is I do remember being bitten some years before falling ill and thought nothing of it as wasn't aware of Lymes or ticks at the time but I've since learnt it can lay dormant then you can come crashing down with it. Most people with chronic lymes don't remember being bitten or a rash.

    I think it would definitely be worth your while having extensive Lymes and co infections tests done to rule it out/in. There's also a lot of other illnesses that can mimic lymes symptoms hence why I'm now awaiting an immunology appt to rule those out or in.

    Are you in the UK or US?

    Beste wishes Sarah

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    • Posted

      Hi sarah, i have been posting on and reading this post since jan 16 as i 1st had lymes mentioned to me by an A&E doc in 2013 my story is long but i will try to keep it brief. I cant remember a bite or rash but prior to 2012 was an avid walker and was always in meadows,woods and on farmland i was bitten by insects but never saw a tick on me. since 2012 my health as deterioated to the point i am nnow house bound in 24/7 pain with every symptom of lymes the worse being neuro,,vision,balance problems,neuropathy and gastric problems my GPs have sent me for every test they can think of my ESR is always high IgE high and this year cyst have shown on my brain,in stomach,breast and now in thyroid gland- non anywere on scans 2015.Ive been sent back and fourth to specialist and following a positive result this year for a lymes co infection (anaplasma) i realy thought i had the answer and would get treatment (the test was NHS) but i still keep being told i dont have lymes. ive been referred to sheffield ID but they wrote back saying i needed to see someone local then i was referred to manchester ID they dismissed it and wont see me. could you tell me were you are being treated by ID and you mention immunology to rule out other illnesses what would these be and what do immunology specialise in ? it must be the only specialist i havnt seen-thanks for any info /advice

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    • Posted

      Hi Vicky will pm you as not sure if we're allowed to mention actual names etc on here of Drs/establishments etc x

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  • Posted

    Hi Tasha:

    I too am asking if you're in the UK or US.  Options may be different for you if your in the UK.  Your story has many aspects that ring true when dealing with chronic Lyme Disease.  I speak from one who has and am still experiencing several you've mentioned after being bitten 18 months ago.  While I had 21 days of abx, it wasn't long enough to stop the little buggers from doing and continue to do, much damage.  As a sidebar:  At the same time my dr. insisted I withdraw/taper from 25 years of benzodiazipine usage. Kind of ironic considering Canada is prescribing benzos to cope with Lyme. So my CNS was struck twice as hard.  Over the past 18 months I've spent 3 days in the hospital with every cardio and neurology test known to the field of medicine, (plus 2 lumbar punctures) been in the ER several times and felt like, with the constantly changing symptoms (along with those that persisited), I should just pitch a tent in the parking lot.  The worst side effects had to do with a wonky head, extreme fatigue, heart palpatations, high blood pressure, and weakness in my legs.  I won't bore you with the multitiude of other side effects that would, and still come and go.  It seems because your CNS is effected, your whole body is a target.  The "Great Immitator" as it's called, can have you running from one specialist to another and all have tests many coming back saying all is normal.  Been there.... done that.  Westerm Blot said positive Img's but others not present..So infectious disease doctor washed his hands. So frustrating.  To cut to the chase, I left my cardiologist yesterday and at his suggestion I'm going to make an appointment with Mayo Clinic.  We have a few of them here in the US.  The one in Minnesota is well versed in Lyme as they have all but an epidemic of Lyme in that state so they are poised to have more experience recognizing it.

    So to answer your question:  No, you're not looking in the wrong place.  What you described rang many bells.  I suggest you find a Lyme literate doctor in your area and have everything written down that you want to convey before your appointment.  This disease doesn't always allow us to remember the details when we're trying to discuss in the short period of time given.  Also, it sounds like it's hit you neurologically rather than as artritis.  There's much info that can be garnered from this website/forum.  I suggest you spend some time reading the stories many have shared as I've been doing these many months. Jo-Ann is just one who seems to have some excellent advice.

    Good luck to you Tasha and may you find the help you seek to overcome this dreadful, life sucking disease.

     

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    • Posted

      does Lyme's cause unintentional weight loss? I lost 25 pounds over two months without diet change or any vomiting.

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    • Posted

      I'm not sure if its a common symptom or not Tasha but when I first fell ill I lost 1.5 stones in 6 wks without vomiting/loose stools etc and my gp couldn't understand why. 18 months on I've gained the weight back and now my usual weight.

      Was this when you first fell ill? Or recently?

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    • Posted

      hi, i also lost 16kgs for no reason and ended up under weight and needing high calorie drinks from my doctor the weight loss was over a 3 month period
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  • Posted

    I thank you all for your replies. I will try to answer everyone's questions in one comment. I live in the US. And have gone to a rheumatologist who did a full panel for auto immune disease. Only conclusive finding was high antibodies for hoshimotos thyroiditis. But my thyroid is in perfect condition and all thyroid labs are normal. The day this started my thyroid TSH level was high but has never been since. I have been to 4 endocrinology specialists all can't find any link to the thyroid and these symptoms. CT scans of chest and abdomen show nothing. Cardiac tests all negative and I insisted they do just about everything through to a cardiac catheter which was negative as well. Vitals all stay normal through the most scary and strange neurological malfunctions. Sometimes when it hits at work I just start dropping things. I have been seen by two neurologists they find nothing on MRIs and the MRA I insisted they conduct. They told me they tested for Lyme at one of my hospital visits but I never saw the test and they also told me a chest CT scan was fine when it clearly said inconclusive due to not being done correctly. And they never mentioned the high TSH the day this started so I went on a huge long expensive search in all the wrong places before learning it was even off that day. Now its all normal and there seems to be no further connection with the hoshimotos as to why this would be progressing so severely. I don't have good days anymore. I work through sometimes falling into walls and struggle driving because stop and go brings about strange head sensations and disorientation. I am told they didn't do the correct testing and that I should insist on the correct tests. I was referred to a doctor in PA that has Lyme himself and was misdiagnosed for 10 years but he is so sought after that his next appointment I had to settle for in January 30th. Until then I just wanted to know if this really could be what's happening as the woman I spoke with says my issues are exactly what she experiences and she has had Lyme diagnosed after the same doctors I've been to misdiagnosed her and weren't performing the correct tests.

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    • Posted

      Hello again Tasha:

      Just a few more questions.  Where do you live (state) in the US?  Are there woods near you or do you have occassion to walk in the woods.  Are there deer in your area?  Did you have occasion visit an area with woods/deer?

      I've visited, on a couple of occasions, with an Infectious Disease doctor (among other specialties) and with even a Western Blot negative result IgG (positive IgM) it took abnormally high protein levels (+ other abnormalities) that pushed him to suggest going to Mayo.  His reasoning behind this suggestion was, "Some have more confidence in Mayo rather than local physicians." 

      My suggestion is for you to find a doctor willing to refer you to either Mayo or Cleveland Clinic.  I've been given this advice repeadedly from several doctors and finally acquisced.  They will not make an appointment for the Infectious Disease Dept. without a referral.  The reason I asked if you live or have been in an an area where dear may roam, is this was one of the reasons the doctor gave in conjunction with the lumbar puncture and EEG results.  I live in such an area and work in my yard. 

      This may give you an alternative to waiting for that appointment in January.  It may also give you more information if there is something else going awry. Along with a physicians referral, they will request all your medical records and access them by a panel of physicians before granting an appointment.  I find this more indepth than perhaps seeking the opinion of one specialist.  I am told that in one day, they can give you the valuable information you so deserve.

      My information was faxed to Mayo on Tues. Oct. 18th.  I'm not under the illlusion that things happen rapidly but am hopeful that the call to make an appointment will come soon. 

      Good luck to you, Tasha and may the return of good health be in your near future.

      Judy

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    • Posted

      Hello Judy. Yes I am living and was raised in upstate New York. I have lived in the woods for 34 years. I hunt and fish and have always been in the deep woods. Often times barefoot and in my 34 years never remember even seeing a tick on myself. However every single dog I've ever had has had Lyme disease at some time or another due to just living where I live. My kids have to be checked all the time as they have had them crawling on them often just while playing in our yard. The ticks are definitely here and I very possibly may have come into contact with many and just didn't check or feel it. I am focused now on Lyme the more people I speak to and the more i find have it here are feeling exactly how I feel. I have been to my PCP and am awaiting results from the Lyme panel but even if it comes out negative I am going to pursue as many other avenues as possible to get an accurate diagnoses. I hope things happen fast for you dealing with the doctors you mentioned.

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      Hi Judy, were you able to be seen at the Mayo Clinic. I wonder if they were able to be of any help. Do they have a dedicated lyme disease group? I live in Maryland and Johns Hopkins recently started a lyme disease study group, I am not sure if they offer treatment or just what.

      Rick

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      Hi Rick, Long story short...No apt. with Mayo without referral.  Infectious disease Doc sent all pertinent medical info including results of 2 spinal taps + blood panels requesting apt. (A packet of about 45 pgs.)  Mayo said in fax they would not consider an apt., with no explanation.  Yep, stunned everyone.  Best I can determine for their refusal, is my co-issue with benzo withdrawal both being at the same time.  A prescription (forgive the pun) for litigation if they get it wrong.  One mirrors the other as both affect the CNS with almost identical symptoms and sxs.  I'm into this over 2 yrs. now and am still battling with a list of sxs although some are behind me.  I suggest you apply to both Mayo and Johns Hopkins. You'll dbl. the possibilities of acceptance.  Someone needs to give you some answers and a possible prognosis for both your mental and physical wellbeing. I wish you the best and hope you'll drop by with a message or two and let me know the outcome should you continue to persue this course of action.  Very interested.

      ?Judy

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    • Posted

      Thanks for the information, Judy. Have you been able to make any progress with treatment since your last update? Also, did any of your many tests come back positive for lyme? I have had the Western blot several times and it has always shown negative. I asked my doctor about sending blood to the Igenix lab for their lyme tests, but that is not allowed on my health insurance. I think I might adk her to order it for me off the books and I will self pay. My lyme doctor diagnosed on symptoms despite the negative Western blot, but it would be nice to have a definite proof of infection.

      Rick

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    • Posted

      No treatment for Lyme, just dealing with benzo withdrawal as the Lyme request was denied by Mayo and infectious disease Dr.'s only recourse was a pic line in my chest to deliver antibiotics for an extended period of time.  Decided to take a pass on that procedure as my symptoms mirrored both.  Still suffering but expected, after long duration on benzos.  Re: tests positive for Lyme:  Positive on 5 bands but Western Blot was stil negative. Dr. felt the 3 wks. of Doxy was enough to render the initial infection harmless. I'm suggesting you ask for education and credentials of the Lyme Dr. you are seeing.  There seem to be several docs out there who don't have the expertise re: Lyme but are representing themselves as Lyme specialists.  Just a suggestion.  Igenix an option, but as you said could get expensive.  But if gives you peace of mind and a final answer, may be well worth the investment. I wish you well on your journey to some definitive answers.

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