This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, Joint Pain issues, Living with Lyme Disease, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments.
I am copy pasting a post i made on a b12 deficiency site , it lists all the symptoms i have been having since mid 2010 , i have spoken to four doctors about these symptoms possibly being lyme disease but was told everytime i dont have all the symptoms so its not lyme just b12 deficiency , one of the doctors a physician wasnt even aware of what lyme disease was , the other doctors i spoke to were all neurologists, i would greatly appreciate any suggestions
1) Around June 2010 i started feeling crawling sensation all over my body , like some insect crawling , went to three dermatologists , a physician , took various allergy medicines given by the dermatologists , no relief till date , i am still feeling the crawling sensation while i am typing this , dermatologists gave up & told me to see a psychologist.
2) Jan 2011 - I got a complete heart evaluation , i had no heart problems
3) Feb 2011 - I went to a ENT because I was having difficulty in swallowing for about a year , It started 2-3 days after i started doing Kapalbhati Yoga ( https://www.youtube.com/watch?v=mD2_zyuztos ) , my throat had swollen due to acid reflux which started after i did this yoga exercise for two days . ENT diagnosed me with "reflux pharyngitis" & "dislocated septum with DNS e spur" , prescribed
esomeprazole tablets for two weeks , i took the medication for two weeks but did not see the ENT again.
4) May 2011 , started suffering from heart palpitations about 2-3 times a week which also caused some breathing difficulty , the frequency of the palpitations decreased after a month . i started feeling tingling sensation on my head & also felt pain like someone pulling a strand of my hair at different parts of my head. Numbness in limbs , I have a habit of pressing my arm on my forehead while sleeping , during this period when i would remove my arm from my forehead my forehead would become numb.
5) June 2011 , Numbness become more severe , the small fingers of both my hands & both feet would always feel slightly numb throughout the day.
I started feeling dizzy sometimes , while walking sometimes i would feel my legs are about to collapse , i would have these attacks where i get slightly blurry vision , felt like someone was squeezing the right side of my head , if someone was talking to me during this i would have difficulty in understanding what they are saying . Ringing in my ear ( tinnitus ) - which i have till date.
I went to a physician , he did some blood test , all were normal , i had already done heart tests in January so no heart tests were done ,cervical xray which showed stiffness in the neck area, prescribed esomeprazole again , Vitamin E capsules , some nerve medicine ( forgot name ) plus some other medicines , took medicines for a month , no relief .
6) Went to a neurologist , he told me after clinical examination ( i.e hammer on knees & all ) that i have no neurological issues , he got B12 & vit D-25 tests done ,
My B12 was 193 pg/ml & D-25 was 22 ng/ml .
Also got nerve conduction velocity test done , result was " predominantly axonal motor sensory neuropathy" .
I was prescribed a B12 Capsule twice a day which had cyanocobalamin 750 mcg + 500 mg Omega3 and pregablin 75mg twice a day . , took these plus some other antidepressants / anxiety tablets for four months .
6) July 2011 , now i started getting muscle twitching all over my body including my face , same medication as above continued.
7) October 2011 , I started getting pain & stiffness in all my joints , even in my fingers , I never had any joint issues in my life before this , a month back i used to walk on a manual treadmill without any joint pain ,same medicine continued by the neurologist, Calcium with Vitamin D3 tablets was added , i was able to reduce the stiffness & pain by regular joint exercise & massage.
8) January 2012 I checked my B12 again , it was 225 pg/ml , my father became very ill , i was with him in the hospital for a month, i stopped taking any medicine during this period & till date have not taken any medicine or seen a neurologist since then.
9) August 2012 Went to a ENT for the tinnitus mentioned in "5) June 2011" , audiometry test showed slight hearing loss , which according to the ENT was the cause of the tinnitus , ENT also checked my neuro history & prescribed gingko tablets & piracetam 1200 mg , I have not started this medication yet.
10) October 2012 - B12 blood test shows 193 pg/ml again , I still have numbness , muscle twitching , tinnitus , sometimes feel dizzy , I have a appointment with a neurologist this week.
Also the last few months i get a feeling of something poking from inside in my chest near the heart area ,whenever i lie down to sleep immediately my heart rate goes up & i have difficulty in breathing , when i get up & it goes away or i fight it till i fall asleep. i got it checked by a physician who said clinically everything was normal & recommended upper GI endoscopy & cardiac review. I have been avoiding the endoscopy , will get it done soon.
11) From october '12 till january '13 i took b12 injections , i felt a little better when i was taking the injections but after stopping the injections the symptoms are back .
Welcome to MedHelp -- very sorry to hear all that you have been through, and good for you for continuing to press ahead for answers.
No one here is medically trained that I know of, so we can only make suggestions of what we might do next in your situation -- and given that you have been through many docs and many tests, ruling out Lyme (or getting it diagnosed!) is a reasonable thing to do imo.
Many MDs do not understand or respect Lyme, much less know how to diagnose and treat it. A good thing about Lyme docs is not only do they think out of the box, but they also think outside the Lyme box itself --- too many docs seem bonded to their own specialities, and if a patient has something the doc doesn't do daily, then the other possibilities are discounted.
Lyme is one of those illnesses that docs often don't understand and so don't know how to fully diagnose and treat. The good news is that a Lyme specialist, understanding how much medicine doesn't know about Mother Nature, will also think outside the Lyme box, in case you've got something the other docs missed but that also *isn't* Lyme.
Sadly, neurologists, rheumatologists and infectious disease (ID) docs are often ignorant of Lyme and dismiss it out of hand, or diagnose it and then treat it inadequately for reasons I won't go into here.
That's a long way of saying, I'd see a Lyme doc to evaluate not only for Lyme, but to hear what else the doc thinks might be going on if it's NOT Lyme.
To find a Lyme specialist, you can send an email to
contact [at] ILADS [dot] org
and tell them where you live and how far you can travel. They will send you back names of members of their organization, Intl Lyme and Associated Disease Society. Their website is ILADS [dot] org and there is a lot of information there, a bit messy to dig through, but worthwhile if you're interested. ILADS is a voluntary group for docs who think broadmindedly about Lyme and how to diagnose and treat it -- on the ILADS website are Dr Burrascano's treatment guidelines, which are written for docs but readable by non-docs, and it may help you see aspects of your symptoms that fit with Lyme, or not.
Above all: DO NOT GIVE UP. You have already been through so much, on pure willpower -- and that is what you need to keep doing. There are answers out there -- maybe Lyme or maybe not -- but you deserve answers. (And PS, the Lyme ticks often carry other infections that need different testing and treatment from Lyme, but docs who do not understand Lyme often overlook the co-infections.)
If I didn't say this above, you will see the term LLMD ... it is not a title or degree, but is patient slang for 'Lyme-literate MD', meaning a doc who thinks beyond the now-outdated diagnostic and treatment approached that much of the medical community cling to. Someday that will change, and all docs will open their minds to real scientific inquiry, but till then, an LLMD is important to find.
Please let us know if we can help further. You can also google/search for
or whatever area you live in, or even LLMD Ohio, and see what you get. There are local and state patient support groups all over the internet who can clue you in to local LLMDs. Note that in some states, LLMDs are shunned by the medical boards as quacks, and docs need to be very quiet about their views on Lyme.
As a result, we do NOT post doc's names in the open here. You will see oblique references to 'Dr D', etc., but we do that only with docs who have already 'outed' themselves in public, like Burrascano mentioned above.
I hope you're not in Texas, because the Texas medical board has run the LLMDs out of the state there, and it's a terrible place to get Lyme as a result ... like getting Lyme itself isn't bad enough!
Even if you don't have Lyme, a Lyme doc with his/her open mind may be able to help diagnose you otherwise. Take care --
I was in TX and can verify what Jackie said above. I just want you to know that I have had most of your symptoms. Including the B12 deficiency, I was also Vit D deficient and became hypothyroid. When you find an LLMD, you should check those values too.
I am sure you've got lyme disease. All your symptoms sound just like it.
Please follow Jackie's instructions and get a proper test done.
I had all those nerve conduction tests done too, donkey's years ago.
28 years later I found out I did actaully have lyme.What a bunch of clueless doctors I have seen over the years!!!
if you take a magnesium supplement I bet you'll get some relief right away from some of those neurological symptoms.
Nearly all of us with lyme need magnesium. If I stop taking mine for 3 days I get such bad twitching I keep falling down stairs, breaking things and walking into the door frame oinstead of getting through the doorway. I am afraid I still cannot feel my toes at all, or my nipples, and occasionally i lose feeling in my fingertips. But, when things were at their worst, my legs would colapse under me and sometimes they were completely paralysed for a few hours at a time. it is so scary when that happens and since taking mag that has NEVER happened to me again.
You need a form that ends in -ate (eg. magnesium orotate, magnesium citrate) not magnesium oxide, which is hard to absorb and gives most people tummy upset. You start on 400mg a day adn keep increasing the dose till you have maximum symptoms relief, up to a maximum of 900mg a day, don't go over that.
Magnesium deficieny can also cause heart arrhythmia.
I cannot guess from what you've described if your heart thing could be arrhythmia. It could also possibly be Chlamydia pneumonia, which is a kind of heart infection that people with damaged immune systems (including people with lyme disease) often catch.
If you want to give more description of that, I might be able to give some more suggestions abotu what to get checked.
This is a bit of a brain dump (that's the kind of person I am) but the main thing I want to tel you is, persist with lyme testing WITH THE RIGHT DOCTORS AND LABS as I am personally convinced that is what you have. Please don't waste years getting fobbed off like I did.
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