Aa
Any suggestions? Lyme?
I apologize in advance for the length of this...
I am 37 yrs old, a teacher and generally have had great health despite horrible sinuses (5 surgeries). After my last sinus surgery I experienced a lot of pain and had my first MRI (week long headaches/migraines). On the last day school I came home to chills, fever & b/c I already had a headache and neck stiffness the doctor referred me to the ER. My right leg was also very stiff, and I couldn't bend my knee back (stretching it towards butt for lack of a better way of saying it) and the leg was giving out. They treated me for migraine, ignored the rest & I went home & was better. I did have my doctor order a Lyme test though & he included other autoimmune type tests..
About 2 weeks later I experienced true vertigo (sitting - spinning). ENT nurse said a virus. I rested & just had extreme dizziness (not spinning) / lightheadedness and a week later at my appt they gave me a VNG to check the dizziness that persisted (sitting, standing, driving, laying, etc). The test showed poss. central & peripheral abnormatlities so I decided to go see a neurologist who gave me Nuvigil (diagnosed as having narcolepsy 3 months prior). By the time I saw him (early Aug) I had developed tingling in my left hand, arm, foot & toes. I also had two brief instances of double vision (one eye closed / opthamalogist checked me out and said to see neuro).
I also recalled that the previous yr I had fallen numerous times (while teaching), lots of tripping while walking & talking, bumping into door jams, etc. I did a romberg test prior to my neuro exam & realized - wow I can't even stand still w my eyes open or closed w/o swaying & falling. I also had jolts of pain in my fingers (quick) & quick stabs of pain in head (much different from previous headaches) And finally,memory issues - forgetting my address, phone number, forgetting words, etc... Much of this I attributed to perhaps clumsiness and/or just getting older (I had stiff knees going up/down stairs but I am approaching 40).
Needless to say before I even got to my vertigo/dizziness issues the neuro was dismissive of the vng test and said my two sided migraines were not migraines. He said my neuro exam was normal but sent me for a brain mri (w/ and w/o contrast b/c I asked) & a blood test4 for myasthenia gravis. I tried to get a spine MRI but he must have said no. Anyways, the next day I was feeling frustrated but luckily I had an appt with my PCP doctor. He was great. The intern took three pages of notes and they looked at my blood work from the week before. He is the one that said the word that was the elephant in the room - MS. And at that point I felt better as I knew there are so many mimics. As a teacher I love to research and it is more intellectually interesting to me and empowering to research and have an idea of what was going on. I knew it could be anything from Lyme to B12 deficiency to whatever...
So since my B12 was borderline low (420 I believe) we began injections (weekly) and I said - hope it works! I had also started taking D a couple weeks prior. I just want to feel better - I was on summer vacation and also have a three year old. Mind you, my fatigue was extremely disabling. I could only do about 1- 3 hours of being out and about before feeling like death. And that was after sleeping all night and resting all day!
So, about 2 weeks prior to work beginning I noticed the tingling was moving to my right side. More so in my fingers and toes. I'm not so sure it is even every finger like it is on the left. I still had dizziness (but less severe - but can't be on my feet for more than an hour). And I also have tingling still on the left (sometimes it goes all the way to my hamstrings). I also began experiencing jerks of my left leg while sitting and/or recling watching tv. One time I was laying watching tv and my leg completely shot up in the air - but mostly it is a quick jerk.
Last week I began to have days of severe joint pain (fingers) and also muscle aches in arms (upper and lower and sometimes shins). The pains (mostly at rest and also when using my body) and aches seem to be come and go. So, I may have severe joint pain in the hands for a full day or two and it subsides to stiffness but then may reappear a few days later. I also have what I think is "bone" pain but doubt it is that but it is in the shoulder region closest to the upper arm - technical name is acromion. But literally, this pain was only to the the touch and was gone is one - two days!
After my third B12 injection the PA saw me & began to ask if I was anxious or stressed -3 times. I basically explained that yes - right now I was anxious but only b/c I had to go back to work and teach on my feet and between the fatigue, dizziness, etc.. He sent me for another Lyme test, and a couple other things. He also ordered a MRI of my cervical spine. I asked for thoracic & he agreed as it would help ease some of my concerns.
Here are my MRI results (1.5 Tesla high field open mri):
Jan 2012 (for head pain) brain mri - Normal except findings of sinusitis. minimal high signal surrounding the ventricles - impression early small vessel changes, migraine, etc... This test was w/o contrast. The mild increased signal was on FLAIR.
Aug (Brain ww/o contrast): No signal abnormalities. No enhancing lesions, pansinusitis (not sure if 3mm slices used - it wasn't ordered MS protocol. I plan to ask neuro at next appt.)
Aug (Cervical & thoracic mri ww/o contrast) (I asked for MS protocal the technique on one says multiplanar multiecho sequences, the thoracic says Sagittal pre/post T1, T2, FLAIR, & inverse recovery. Axial T2.
Cervical findings: mild reversal of cervical lordosis, small hemangioma C5 /T1, no abnormal signal w/o cord, Small disc bulges (basically C4 through CD7 w/ minimal effacement of ventral CSF. Bilateral perineual cysts C4-5 and C5-6. Unremarkable study. Note of sinus issues (duh...).
Thoracic findings: normal, no "persistent signal abnormality is identified w/in the cord. Significant CSF pulsation artifact demonstrated. (how can they get a good read if the csf was making the imaging difficult? I knew I should have asked for closed bore...)
I am just frustrated. Dizziness persists as do all other symptoms (extreme fatigue, etc...). All blood tests normal (awaiting 2nd Lyme), had 3rd of 6 planned B12 injections - no real improvement.
I know I sound like I'm all over the place and all within a few months. I am open to anything but worry that I am just asked to wait. I am beginning to teach next week and I can't stand w/o being dizzy. I cannot use my hands for long periods of time. I teach high school history. I have gone in the past two weeks 4 times for 3-4 hours each and when I do I need to choose between cooking and/or resting as I cannot do both. Then, basically sit with my three year old exhausted (and feeling guilty) that I have noooo energy at all. I am on my feet from 7:30 until 2pm with about a half hour off. I can't even stand for an hour now. The past few years I have had debilitating pain from sinuses (hence the recent surgery) so some parents complained last year even though my illness was legit. I am concerned and need to keep my dizzies and such under wrap. Any suggestions to the questions should I ask at my next appts? I will go back to neuro just one more time, but if this persists I will find another doc. My PCP is good. But I don't know how I will make it through a full day.
Sorry this is so long. I am just wanting to be "normal". I just don't want to be "that" girl again who is sick. Meds: Gabapentin (900mg at night) started in early June b/c of headaches. Nuvigil, Cymbalta (saw therapist last year b/c of chronic illness), Advair, ZyfloCR, Sporanox (fungal sinusitis) Vitamin D3, Calcium w/D.
Thanks for your patience and consideration!
I am 37 yrs old, a teacher and generally have had great health despite horrible sinuses (5 surgeries). After my last sinus surgery I experienced a lot of pain and had my first MRI (week long headaches/migraines). On the last day school I came home to chills, fever & b/c I already had a headache and neck stiffness the doctor referred me to the ER. My right leg was also very stiff, and I couldn't bend my knee back (stretching it towards butt for lack of a better way of saying it) and the leg was giving out. They treated me for migraine, ignored the rest & I went home & was better. I did have my doctor order a Lyme test though & he included other autoimmune type tests..
About 2 weeks later I experienced true vertigo (sitting - spinning). ENT nurse said a virus. I rested & just had extreme dizziness (not spinning) / lightheadedness and a week later at my appt they gave me a VNG to check the dizziness that persisted (sitting, standing, driving, laying, etc). The test showed poss. central & peripheral abnormatlities so I decided to go see a neurologist who gave me Nuvigil (diagnosed as having narcolepsy 3 months prior). By the time I saw him (early Aug) I had developed tingling in my left hand, arm, foot & toes. I also had two brief instances of double vision (one eye closed / opthamalogist checked me out and said to see neuro).
I also recalled that the previous yr I had fallen numerous times (while teaching), lots of tripping while walking & talking, bumping into door jams, etc. I did a romberg test prior to my neuro exam & realized - wow I can't even stand still w my eyes open or closed w/o swaying & falling. I also had jolts of pain in my fingers (quick) & quick stabs of pain in head (much different from previous headaches) And finally,memory issues - forgetting my address, phone number, forgetting words, etc... Much of this I attributed to perhaps clumsiness and/or just getting older (I had stiff knees going up/down stairs but I am approaching 40).
Needless to say before I even got to my vertigo/dizziness issues the neuro was dismissive of the vng test and said my two sided migraines were not migraines. He said my neuro exam was normal but sent me for a brain mri (w/ and w/o contrast b/c I asked) & a blood test4 for myasthenia gravis. I tried to get a spine MRI but he must have said no. Anyways, the next day I was feeling frustrated but luckily I had an appt with my PCP doctor. He was great. The intern took three pages of notes and they looked at my blood work from the week before. He is the one that said the word that was the elephant in the room - MS. And at that point I felt better as I knew there are so many mimics. As a teacher I love to research and it is more intellectually interesting to me and empowering to research and have an idea of what was going on. I knew it could be anything from Lyme to B12 deficiency to whatever...
So since my B12 was borderline low (420 I believe) we began injections (weekly) and I said - hope it works! I had also started taking D a couple weeks prior. I just want to feel better - I was on summer vacation and also have a three year old. Mind you, my fatigue was extremely disabling. I could only do about 1- 3 hours of being out and about before feeling like death. And that was after sleeping all night and resting all day!
So, about 2 weeks prior to work beginning I noticed the tingling was moving to my right side. More so in my fingers and toes. I'm not so sure it is even every finger like it is on the left. I still had dizziness (but less severe - but can't be on my feet for more than an hour). And I also have tingling still on the left (sometimes it goes all the way to my hamstrings). I also began experiencing jerks of my left leg while sitting and/or recling watching tv. One time I was laying watching tv and my leg completely shot up in the air - but mostly it is a quick jerk.
Last week I began to have days of severe joint pain (fingers) and also muscle aches in arms (upper and lower and sometimes shins). The pains (mostly at rest and also when using my body) and aches seem to be come and go. So, I may have severe joint pain in the hands for a full day or two and it subsides to stiffness but then may reappear a few days later. I also have what I think is "bone" pain but doubt it is that but it is in the shoulder region closest to the upper arm - technical name is acromion. But literally, this pain was only to the the touch and was gone is one - two days!
After my third B12 injection the PA saw me & began to ask if I was anxious or stressed -3 times. I basically explained that yes - right now I was anxious but only b/c I had to go back to work and teach on my feet and between the fatigue, dizziness, etc.. He sent me for another Lyme test, and a couple other things. He also ordered a MRI of my cervical spine. I asked for thoracic & he agreed as it would help ease some of my concerns.
Here are my MRI results (1.5 Tesla high field open mri):
Jan 2012 (for head pain) brain mri - Normal except findings of sinusitis. minimal high signal surrounding the ventricles - impression early small vessel changes, migraine, etc... This test was w/o contrast. The mild increased signal was on FLAIR.
Aug (Brain ww/o contrast): No signal abnormalities. No enhancing lesions, pansinusitis (not sure if 3mm slices used - it wasn't ordered MS protocol. I plan to ask neuro at next appt.)
Aug (Cervical & thoracic mri ww/o contrast) (I asked for MS protocal the technique on one says multiplanar multiecho sequences, the thoracic says Sagittal pre/post T1, T2, FLAIR, & inverse recovery. Axial T2.
Cervical findings: mild reversal of cervical lordosis, small hemangioma C5 /T1, no abnormal signal w/o cord, Small disc bulges (basically C4 through CD7 w/ minimal effacement of ventral CSF. Bilateral perineual cysts C4-5 and C5-6. Unremarkable study. Note of sinus issues (duh...).
Thoracic findings: normal, no "persistent signal abnormality is identified w/in the cord. Significant CSF pulsation artifact demonstrated. (how can they get a good read if the csf was making the imaging difficult? I knew I should have asked for closed bore...)
I am just frustrated. Dizziness persists as do all other symptoms (extreme fatigue, etc...). All blood tests normal (awaiting 2nd Lyme), had 3rd of 6 planned B12 injections - no real improvement.
I know I sound like I'm all over the place and all within a few months. I am open to anything but worry that I am just asked to wait. I am beginning to teach next week and I can't stand w/o being dizzy. I cannot use my hands for long periods of time. I teach high school history. I have gone in the past two weeks 4 times for 3-4 hours each and when I do I need to choose between cooking and/or resting as I cannot do both. Then, basically sit with my three year old exhausted (and feeling guilty) that I have noooo energy at all. I am on my feet from 7:30 until 2pm with about a half hour off. I can't even stand for an hour now. The past few years I have had debilitating pain from sinuses (hence the recent surgery) so some parents complained last year even though my illness was legit. I am concerned and need to keep my dizzies and such under wrap. Any suggestions to the questions should I ask at my next appts? I will go back to neuro just one more time, but if this persists I will find another doc. My PCP is good. But I don't know how I will make it through a full day.
Sorry this is so long. I am just wanting to be "normal". I just don't want to be "that" girl again who is sick. Meds: Gabapentin (900mg at night) started in early June b/c of headaches. Nuvigil, Cymbalta (saw therapist last year b/c of chronic illness), Advair, ZyfloCR, Sporanox (fungal sinusitis) Vitamin D3, Calcium w/D.
Thanks for your patience and consideration!
I personally intend to use antibiotics as long as necessary until I am cured. Lyme is hard to kill, and I do not believe that natural treatments would be sufficient to cure me given my 6 year long infection before diagnosis, my coinfection of Bartonella, and having been given steroids.
For someone with cognitive and neurological symptoms, it is unlikely herbals would be sufficient, although they can certainly been helpful. I am still amazed at how much supplements have eased several of my symptoms and helped heal my messed up body. (For example, I take 3000 IU of Omega 3 a day, along with Meriva Curcumin. Both help with brain inflammation.)
There are some awesome LLMDs in NY, too.
For someone with cognitive and neurological symptoms, it is unlikely herbals would be sufficient, although they can certainly been helpful. I am still amazed at how much supplements have eased several of my symptoms and helped heal my messed up body. (For example, I take 3000 IU of Omega 3 a day, along with Meriva Curcumin. Both help with brain inflammation.)
There are some awesome LLMDs in NY, too.
My LLMD is a DO and she is great. She knows alternative and mainstream ways to try and cure Lyme. I say try, because there are so many different ways and doctors should be aware of that fact and be willing to switch it up if necessary. Burascano mentions that in his latest DVD that you might try something 6 mos and then switch the medicine if not better.
Hi
I was told I had ms even though all my testing was clear.
I stressed for 5 years about ms and have only just let my guard down due to being positive for lyme and bartonella, then today my daughters results come thru and she has lyme also.
All the time I worried myself sick thinking maybe I did have ms.
Don't do what I did, just get tested for lyme and go from there.
And remember even a negative result doesn't rule out lyme.
Sometime I think neuros just give us a possible ms diagnosis as there not sure what we have..
I did ask my neuro twice if I could have lyme, and because I am in Australia he wouldn't test me.
Now I wish I had of lied all them years ago, I may have saved myself some heartache...
I was told I had ms even though all my testing was clear.
I stressed for 5 years about ms and have only just let my guard down due to being positive for lyme and bartonella, then today my daughters results come thru and she has lyme also.
All the time I worried myself sick thinking maybe I did have ms.
Don't do what I did, just get tested for lyme and go from there.
And remember even a negative result doesn't rule out lyme.
Sometime I think neuros just give us a possible ms diagnosis as there not sure what we have..
I did ask my neuro twice if I could have lyme, and because I am in Australia he wouldn't test me.
Now I wish I had of lied all them years ago, I may have saved myself some heartache...
Yes, I have the names of several people in my state so far. Dr. Jones is one of them actually! But anyways, one of them is a naturopath and the other is a D.O. I know that D.O's go through the same primary doctor training and I have seen a naturopath in the past. As far aas the naturopath, I admit I am worried that homeopathy and other natural remedies may not be enough. Anyone have experience with this? And while I am openminded I worry the D.O. will suggest to do craniosacral therapy or others I am hesitant about. I love alternative medicine, but part of me is still skeptical.
Glad to see you here! :)
In addition to ILADS, your state Lyme Disease association could be a good source of LLMDs. A local Lyme support group might be good, too, as they can tell you who is "the best" and who takes what insurance.
Some insurance plans will cover meds. Mine is miraculously covering mine, and I even have an out of network referral to my LLMD as there wasn't anyone else in the area who could diagnose and treat me. I still pay the difference between what the LLMD charges and what the insurance will pay for a visit. I was really irritated about that for a while, until I learned about people whose insurance flat out refused to cover anything and they are paying cash for everything (BCBS and Kaiser are infamous for this).
Do what it takes to get to an LLMD so you can get checked out. If you do indeed have Lyme, the sooner you start treatment, the better.
Keep us posted!
In addition to ILADS, your state Lyme Disease association could be a good source of LLMDs. A local Lyme support group might be good, too, as they can tell you who is "the best" and who takes what insurance.
Some insurance plans will cover meds. Mine is miraculously covering mine, and I even have an out of network referral to my LLMD as there wasn't anyone else in the area who could diagnose and treat me. I still pay the difference between what the LLMD charges and what the insurance will pay for a visit. I was really irritated about that for a while, until I learned about people whose insurance flat out refused to cover anything and they are paying cash for everything (BCBS and Kaiser are infamous for this).
Do what it takes to get to an LLMD so you can get checked out. If you do indeed have Lyme, the sooner you start treatment, the better.
Keep us posted!
Yes, good to know about the steriods. I am on them several times a year b/c of sinus problems... (but not recently or at least not since May or so)....
Great advice about how good treatment from the right people is priceless. I am armed with my list of LLMDs that I found online and making calls this week!
Great advice about how good treatment from the right people is priceless. I am armed with my list of LLMDs that I found online and making calls this week!
Yes, until you know for sure what you have try to avoid steroids. It was thought that I probably had NS though I was never diagnosed (I had several brain lesions on MRI), and was given prednisone. I felt great for a little bit before crashing to worse than I ever was. It was at that point that I had to reduce to part time work. It took almost a year of Lyme treatment to get back to full time.
My LLMDs do not take insurance but my Rx's are covered, so I mainly only pay out of pocket for office visits. Well worth the cost to me since without Lyme treatment I don't think I'd be able to work at all by now.
Also, while even serious symptoms from Lyme and co-infections can improve/resolve with treatment, it is not always a quick fix. Just keep in mind that the body can need time to heal.
My LLMDs do not take insurance but my Rx's are covered, so I mainly only pay out of pocket for office visits. Well worth the cost to me since without Lyme treatment I don't think I'd be able to work at all by now.
Also, while even serious symptoms from Lyme and co-infections can improve/resolve with treatment, it is not always a quick fix. Just keep in mind that the body can need time to heal.
I was lucky to have a medical professional friend with Lyme recognize it in me (from another state, ) and yes steroids is bad for lymies. I woke up in the hospital on a respirator, having come close to death , due to steroids, I am very passionate about it. It is sometimes necessary like if you got pneumonia but only if you are watched carefully.
The documentary is very sad and a huge eye opener. Only watch it when you feel ready.
Take care
The documentary is very sad and a huge eye opener. Only watch it when you feel ready.
Take care
Thanks. Wow, that sounds incredibly frustrating to be misdiagnosed with things - I can't imagine how you figured out that you had lyme other than steriods make lyme worse? Horrible!!
I need to get to it, because I need to be able to function. Certainly how I feel pales in comparison to many here, but hopefully a confirmation sooner will help.
I was able to watch a 10 min. clip of the documentary and plan to watch the full movie soon. It is just really humbling and sad. But I'm happy that there are some angel doctors out there trying to figure this out and assist people in becoming healthy once again.
Thanks again and I Hope you are well too!
I need to get to it, because I need to be able to function. Certainly how I feel pales in comparison to many here, but hopefully a confirmation sooner will help.
I was able to watch a 10 min. clip of the documentary and plan to watch the full movie soon. It is just really humbling and sad. But I'm happy that there are some angel doctors out there trying to figure this out and assist people in becoming healthy once again.
Thanks again and I Hope you are well too!
Hi, I agree with wonko but would like to add that I was misdiagnosed with MS, Lupus and many other things. When you go to ILADS email them and ask them for an LLMD in your area or near you. They will use igeneX labs which is the only lab out there to give you correct results. It is possible but not probable to find a mainstream doc who will send your blood there. You could also do it yourself but finding an LLMD would be your best bet.
In addition, Hulu now has the documentary "under my skin" for free if you want to watch it.
Many of us have suffered through unnecessary painful tests and many doctors to finally get to an LLMD and results and treatment.
I am sorry you are having so many problems but we are here for you.
Good luck.
In addition, Hulu now has the documentary "under my skin" for free if you want to watch it.
Many of us have suffered through unnecessary painful tests and many doctors to finally get to an LLMD and results and treatment.
I am sorry you are having so many problems but we are here for you.
Good luck.
Thank you very much for the information. My goal will be to find a Lyme literate doctor who hopefully accepts insurance. I know of a supposed "genious" in my state but have heard costs running into $10,000. But I am sure there must be others out there that will be great. I am angry about the CDC and others in their assessment of how to limit blood tests and possible effective treatment for people. Just unbelievable.
I'm glad that you were able to get better with treatment. I hope your health continues to improve and be well.
And, by the way, you do quite well for using a touchscreen! I appreciate your advice and time reading my post! I am very fortunate to have a great resource on this community and others!
I'm glad that you were able to get better with treatment. I hope your health continues to improve and be well.
And, by the way, you do quite well for using a touchscreen! I appreciate your advice and time reading my post! I am very fortunate to have a great resource on this community and others!
I should say too I'm sure you'll get more complete advise from other posters here. I'm typing from my phone and am not so great at touchscreen.
Anyway glad you found the site and are looking for answers.
Anyway glad you found the site and are looking for answers.
Hi, sorry to hear you are going through so much!
Of course no one can diagnose you online, but given your range of symptoms and overall good/negative tests, you may want to consider finding a so-called "Lyme literate" MD, or LLMD. This is a patient term for doctors who operate beyond the mainstream notion that Lyne is hard to get, easy to cure.
I can understand concerns over MS, but the stocking/glove pattern of your parathesias, negative MRI, and joint involvement sounds more like infection to me.
I can relate a lot to your story, I first started wracking up similar symptoms and going from dr to dr back in '07. I didn't seek out an LLMD until fall '08, but thankfully once I did and got treatment I started to get better.
Some ideas for your research into what be wrong with you:
Google ILADS. This is a professional organization of docs who treat Lyme beyond mainstream protocols.
The book Cure Unknown by Pam Weintraub, I think there are paperback and E- copies for low cost. A dense book that does a great job explaining the bizarre history and controversy surrounding Lyme intertwined with the author's personal story.
"Under Our Skin" is a documentary and is on Netflix and other stream services. I don't like all aspects of the film but it may be of interest to you as you embark.
Best of luck to you.
Of course no one can diagnose you online, but given your range of symptoms and overall good/negative tests, you may want to consider finding a so-called "Lyme literate" MD, or LLMD. This is a patient term for doctors who operate beyond the mainstream notion that Lyne is hard to get, easy to cure.
I can understand concerns over MS, but the stocking/glove pattern of your parathesias, negative MRI, and joint involvement sounds more like infection to me.
I can relate a lot to your story, I first started wracking up similar symptoms and going from dr to dr back in '07. I didn't seek out an LLMD until fall '08, but thankfully once I did and got treatment I started to get better.
Some ideas for your research into what be wrong with you:
Google ILADS. This is a professional organization of docs who treat Lyme beyond mainstream protocols.
The book Cure Unknown by Pam Weintraub, I think there are paperback and E- copies for low cost. A dense book that does a great job explaining the bizarre history and controversy surrounding Lyme intertwined with the author's personal story.
"Under Our Skin" is a documentary and is on Netflix and other stream services. I don't like all aspects of the film but it may be of interest to you as you embark.
Best of luck to you.
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