SURVIVING NEUROLOGICAL LIMBO LAND - NO DX User Group
Limbo is hell
About This Group:

This is a group for anyone who is currently living in limbo land with a neurological disorder but doesn't have a diagnosis. Many people are living with chronic and disabling neurological problems which mirror such diseases as multiple sclerosis, lupus, M.E., Fibromyalgia, Lymes disease, Vitimin D deficiency, Migraines, Parkinsons yet have no diagnosis and are left to literally struggle on alone. I have set up this group to help support people through their journey, whether its just for a moan, sharing a joke, experiences, advise on how to survive just plain anything. I know there are a lot of us out there. Anyone who feels lost, or needs to share or just wants a big hug please join, there will always be someone to give you support. OUR MOTTO IS: "we are still all in this together..no matter what point of our journey we are in...limbo, dx. or just joining...we are all here for a reason...to seek support, make a friend and find answers..."

Founded by MrsAristotle on October 2, 2009
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Limbo is hell

I never really knew what hell was until my disease process started.  I think the worst part hasn't been the pain, it's been the lack of answers from the medical authorities on what is wrong with me.  The Mayo clinic has turned me down for an appointment, as they don't feel there is any more they can do for me that hasn't already been done... and I'm like... NO ONE HAS DONE ANYTHING!  It's a nightmare, and my wife and I are so damn frustrated by the whole thing.  The worthless neurologist I saw locally had me stand up, put my arms out and then touch my nose.  That was it.  He said, "you have a head tremor."  I was like, no duh, numbnuts, why can't I walk without a cane?  He had no answers for that or for any of the other troubling issues that have plagued me since this all began.  He dared to suggest I was a drug seeker, and then put me on gabapentin and tramadol.  I was livid with his "care" of my case, so I demanded the referral that I speak of at the end of this post.  My wife suggested I post up my information to some neurology boards to see if any of it sounds familiar to someone else.  Now that you have an idea about what I'm dealing with... here's how I got there...

For many years, at least 15, I had a weird issue crop up every day.  I'd develop a mild fever every afternoon, almost like clockwork.  It would start up about 1:00 in the afternoon, and slowly climb until about 5:00.  By 7:00 it would break.  For the most part, it never got above 99.5.  Just enough to make me feel ick, but not enough to really consider it much more than a nuisance.  My doc wasn't too worried about it, so we never did anything to track the cause.  In 2007, I was diagnosed with juvenile diabetes at the age of 34.  A year later, I was diagnosed with a second immune system disease called hashimoto's thyroiditis.  I was told I had a hyperactive immune system, and it was attacking some of my organs.

About 2 years ago, something changed.  The temperature unexplicably started climbing.  First, it went up to 100 degrees, then 100.5, then 101 over a period of 4 months.  By the time it got to 100.5, my doctor decided it was time to do something.  She sent me to see an infectious disease specialist.  He did a ton of blood tests, and I was shocked to find out I had antibodies for diseases I never knew I had been exposed to, including Rocky Mounted Spotted Tick Fever and the Epstein-Barr virus (the virus that is most responsible for the development of MS which is of great concern to me now).

He ended up sending me for nasal surgery, which went well, but lead up to the most hellish experience of my life.  I developed excrutiating pain in the back of my head at the point it meets the neck.  A month after the pain started, 2 ER visits and 2 MRI's later, they could finally see that I had developed an infection of the bones of the skull and first vertebra called osteomyelitis.  My surgeon said that it was very serious, and if it wasn't treated immediately, could spread to the spine and brain very quickly.  He let me go home so I could pick up my wife and drop my car off, and my wife drove me straight back for admission to the hospital.  I was only in for 8 days, but I was off of work until Feb 1st, and even then I could only work half days because of the hyperbaric treatment schedule.

In the months that followed, the pain reduced significantly, but never completely went away.  I was still on oxycodone for the pain.  In August of last year, I was referred to a neurosurgeon to see if they could find out why the pain was still present.  He did a CT and 6 standing x-rays.  A month later, he told me he couldn't find anything and sent me to a physical care specialist.  That doctor sent me to physical therapy.  When I started PT in Sept of last year, I was taking 2 oxycodone a day to help get to sleep.  I wasn't really experiencing "pain" per se, and that was probably why I wasn't really taken very seriously.  I didn't describe it as pain, but as moderate to severe discomfort.  By the time I stopped going to PT, it had gone from being occasional discomfort that I could tolerate most of the day, to being a moderate pain that never reduced or went away.  As a result, I am now on up to 4 oxycodone a day, and take morphine 3 times a day.

Something else started during PT... the head tremor.  It started out as a mild head tremor, focused where the damage in the neck was, to a head tremor and tremors and spasms of the arms and shoulders.  I now have occasional (which means most of the time anymore) problems walking and with my speech.  I never stuttered before in my life until now.  Just to be totally open, I had prior to this experienced a head tremor once during a low blood sugar episode.  It was short lived, and I never thought about it again until I developed the constant head tremor.  If I'm going to be on my feet for more than just a short walk (less than 50 feet), I require a cane.

Some other issues I've had for years include: weird cramping, especially in the intercostal muscles (in the ribs), abdomen and sometimes the thighs.  These aren't just regular cramps, they are super hard cramps that hurt worse than any cramps I'd ever had before, and the pain lingers for days from the damage they cause.  I also have tingling in the fingers on both hands, and weird sensations in my shoulders, upper arms and thighs.  I also suffer from fatigue, sleep apnea, insomnia, hearing difficulties (I actually have really good hearing according to hearing tests, I was told my brain has issues recognizing the input I receive from my ears, especially in noisy situations).  I also have high blood pressure, high cholestorol and water retention.

That's it, that's the summary of my medical ills to date.  Because of my issues with walking/stability, I have been forced to medically retire from my career as a law enforcement officer.  I was a cop for 11 years.  I have little hope of being able to ever return to active duty again.  At this point, I have little hope of being able to work outside of the home.  I can't drive while medicated, so my options are very limited.  If a doctor were to tell me tomorrow that I have cancer, at least I'd have something tangible to call this.  It's a nightmare not knowing.  Disability denied my claim because they don't have sufficient information or diagnosis to be able to make a conclusion (it's being appealled).  I've seen 2 neurosurgeons and a neurologist, and so far I've had more blank expressions than answers.  The first neurosurgeon told me he couldn't find anything wrong, and the second told me he's never seen this before.  I think the worst part was the neurologist suggesting I was a drug seeker.  I blew up on him, and told him "If you damn doctors would do your jobs, I wouldn't need to be on medications."  I never asked to be put on narcotic pain meds, my doctors made those choices for me.  If I could come off of them today, I'd love to.  I fear becoming hooked on them.

I have one last hope left now that Mayo has refused to see me.  I have the appointment I got after I demanded a referral from the worthless neurologist here in town.  I have an appointment in July at the movement disorders clinic at Barnes Jewish Hospital in St Louis.  We are praying they can give us some answers, instead of just blindly throwing more medications at me.
28 Comments
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1627868_tn?1333889942
Hello and welcome the the group!  This is a great place for support from people who have been through similar experiences.

I am really sorry that you are going through all this!  It sounds like you have your plate full and have been through enough to last a few lifetimes.

While I haven't had many of your problems/symptoms, I can relate to doctors not helping you.  I can also relate to being labeled a "drug seeker".  I think once that is in your file, it is really hard for doctors to take you seriously, which sux!!!  Like you, I was not seeking medications, only someone to help me understand what was wrong with me and why I was feeling so crappy.  I also need to function and not once did I ask for narcotic medications, only for the doctor to figure out what was wrong with me.

How is your PCP?  Do you have one that you can trust to help you and to be on your side?  If not, maybe you should start there.  A good PCP will be there for you and fight with you to find the answers.  

Is the pain your most bothersome symptom right now?  If so, maybe you could also seek out a pain specialist?  There are many options out there that don't include narcotics.  Pain was one of my most bothersome symptoms.

I really feel for you because it SUX to be in pain all the time, especially when no one will help you.  I have had chronic pain for the last 4+ years and it took me until December to find someone who would help me, and without narcotic meds.  Everyone is different and responds differently to each medication, so it may take a little bit to find the right combo.

As far as the walking goes, if your problem is something neurological, your ability to walk may or may not come back.  It just depends on where the damage is, etc.  I have foot drop that started out fairly mild but has progressed to pretty much total loss of movement in my foot/ankle.  I was told at this point, most likely the use will not come back.

I know this is really hard, but chin up!  There are a few of us here, including myself who have gotten diagnosed in the last few months after a few years of searching.  Unfortunately neurological diseases sometimes take a long time to diagnose.  It takes a good, dedicated doctor to follow you over a period of time to watch for changes in you.

Keep that appt, and in the meantime, look for a good pain specialist, possibly a new PCP, and maybe a physiatrist (a movement/rehab doc) to assist you in your search.  And again, welcome!
Take care!
Sarah
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Avatar_m_tn
I've been pretty blessed to have a very understanding and helpful PCP.  He has been really supportive throughout the whole process.  When I first contacted him to tell him about what happened with physical therapy and the specialist wanting to send me to acupuncture after the damage PT caused, he was livid.  He sent the neurosurgeon a message demanding he do something with my case, or he was going to refer me to a new neurosurgeon.  My wife and I opted not to see the local neurosurgeon again.  By the time we saw that first neurosurgeon, we already felt like no one was taking me seriously.

I know there has to be an explanation for what happened to me.  I know my case has been mishandled, and I should probably talk to an attorney.  That's not really my style.  I wasn't really upset about any of it until the neurologist suggested I was a drug seeker.  I've been involved in EMS and law enforcement for over 20 years, and I've seen the effects of drugs.  I hate taking over the counter pain meds, let alone narcotics.  I don't want to be on drugs.  Both my PCP and I don't really feel comfortable with pain management until we find out what exactly is wrong with me.  I honestly believe I've got more than one issue going on.  I think I've got ongoing complications from the infection, and I think I've got a neurological condition that was triggered by the situation.

I won't cancel the appointment in July.  I don't care if I have to thumb a ride to St Louis, we will make the appointment.  I'm hoping they can finally get me some answers, because the not knowing is worse than the pain I'm suffering.  The fatique is even worse.  I never used to nap, and now there are times I have to take two naps a day.   I'm only 38 years old.  This isn't right!
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1627868_tn?1333889942
I hear you on the drug seeking.  It p****** me off to no end too, to know that I was once labeled a drug seeker.  Errggg!!

I am a nurse and do in home hospice care.  We go into wherever the patient calls home, be it nursing home, assisted living, their own homes, etc.  I have seen more than my fair share of family members stealing meds from patient's, nurses from nursing homes, etc who are hooked, etc, etc.  Being in law enforcement, you know what I am talking about.  I went to school with actually quite a few people who are addicted to prescription drugs and some who have died from heroin or other drug overdoses.  Unfortunately the area that I live in, drugs are a real problem.

I really do pray that you find someone to help you.  There is another forum member who stops in from time to time who is VERY knowledgeable on infectiouse diseases and their relationship to autoimmune and neurological diseases.  I will send him a note to look over your post and give his input.

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Hi,  I have so much empathy for you and understand your fustration.  I am also in a situation of not knowing what is whole neurological problem I have battering my body.
I have a good team of medical people and two years on I am still waiting for answers also.  I have lesions on my cervical spinal cord from my C2 to my C6.  I have all the symptoms of MS but no firm dx.

I see my neuro on May 3rd and he is sending me off for another MRI to see what changes may have occured.  I seen my local Doctor last week and whilst he knows and has seen the incredible pain I have been in I know he feels helpless.

Last week I told him I need answers and without them I cannot keep living with not knowing what is wrong with me.  I am also on Morphine and Gabapentin but I have have acute espisodes which are very bad.

I have electric shocks all over my body, sensation of water dripping down my legs.  Jerks which target my legs, arms, torso all so frightening.  I use acane to walk as sometimes ym leg has collapsed and I have fallen.  My legs have a spastic state and I had no use of them.  My mucsles go into spasms, which is so
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terrible, the worse pain I had recently was my tendons started to hurt and that pain was off the show.  Like you I just want answers so I can get the right drugs for treatment.  

I worked for News Limited in an executive position and now..... I am so fatigued and in pain I cannot work.  I am 52 years of age and feel like I am 82 and near the end of my life.  No one knows the answers to my problem.

Please keep in touch as it helps to chat with others who are also not dx as we understand each others fustration
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551343_tn?1350880995
When i read your post i just sighed. How can you not be diagnosed with all that has gone on, and all the positive blood tests.

Have you ever been tested for Lymes by the way?

As to temperatures this is a Lupus thing and Lupus would fit some of your symptoms.

I have been in limbo 6 years this year, even with positive stuff for MS. I have given up to be honest and just look after myself as I know even with MS there is nothing I can have now which would make the slightest difference, but i dont think you have MS, it sounds more infectious/auto immune and my dad had some of your problems with Lupus. He used to get this temperature thing in the afternoon, and eventually the pain in his legs.

I think for now all you can do is wait for this appointment, but in the meantime look at holistic ways to treat yourself, that is what i am doing. I have for example gone gluten and wheat free, and it really has helped the burning in my legs, and also the fatigue. I am not saying it helps for everyone but gluten certainly affects the neurological system.

Once you start taking these heavy painkillers like morphine, you body seems to go into withdrawal as soon as you wait a few hours. IF you can I know it will be hard I would try and come off them. I agree with sarah if you can find a pain specialist perhaps they can give you something which is less hard on your system.

I too believe I have two things going on. Even my neuro thinks that.

I dont know how I stay sane, somedays I dont and feel like giving up, but I really want to know why i am ill. I am going to a specialsit clinic in the UK for Lymes and other autoimmune problems even fibromyalgia and M.E. just to see if they can find something going on.

The pain gets to me somedays, but i wont take pain meds I have a high threshold for pain but somedays I feel like screaming. How can we have so much pain but have no diagnosis it is just mad.

I really feel for you but try to keep positive. It sounds to me as though you have been through enough already without adding to it all. xxxx
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1530171_tn?1362547225
Hi  DCaplinger!
Welcome to the forum.
Sarahw244, send me a note.
I've been away, so my medhelp involvement lately has been limited.
There are some medical "holes"regarding your condition..

I have some questions for you regarding DXs and treatments undertaken and  other details.

Hashimotos dx and treatment.
Rocky Mounted Spotted Tick Fever antibodies-  lab test results
EBV - same
Diabetes - lifestyle changes/diet and treatment protocol.

Any other tests, DXs, accidents, injuries etc.
Details regarding any traumatic and/or very stressful events prior to the onset of your more serious symptoms.
  Anything else you may want to add.

Do you still have any connections to help you get a copy of your medical records and doctor notes (without any omissions or tampering)?
You might find some surprises!

Hang in there. Some dots need connecting.
One of the main issues with conventional medicine is lack of   communication and professional bias.

    Let me know and I'll get back to you.
   Cheers,
    Niko






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Avatar_m_tn
You sound so familiar to me.  When I first felt the spastic twitches in my muscles, it was in my legs.  It was about a year ago (before physical therapy actually), I told my wife something felt weird.  It was like my muscles were jerking instead of moving the way they should.  And that's still what it feels like.  It's like my legs are snapping forward into their position, but it's not just a straight forward snap.  They jerk on their own until they are planted.  I also have sometimes severe twitching in the shoulders and upper arms.


I have a brother-in-law with MS I should reach out and talk to.  I don't think I have MS, but I am curious what his symptoms are like.

D
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Niko:

Not sure what you are asking for, but I'll try my best...

I was first diagnosed with Type I Diabetes in 2007 at the age of 34 (I am the only T1 in my family, my dad and both grandfathers had T2).  After going through regular blood work every 3 months, they found my thyroid functioning was dropping, so they ran further tests and a year after I was diagnosed with T1DM was diagnosed with Hashimoto's Thyroiditis (which actually runs in the family, my dad and 2 of my 5 siblings have it).  My treatment for T1DM is Novolog via insulin pump.  I take levothyroxine for the thyroiditis.

After the fever started going up, I went to see the infectious disease specialist.  He drew up what felt like a gallon of blood for testing.  A few weeks later, during the next office visit, he asked me if I knew I had been exposed to rocky mountain spotted tick fever, which I didn't, and if I had ever had mono.  I have never had mono, but I did test positive for Epstein-Barr antibodies.

Until I turned 34, I was very healthy, with the exception that I smoked.  When I was originially dx'd with diabetes, they dx'd me with T2 diabetes, which seemed really odd, because I only weighed 180 pounds, and was really, really healthy... or so I thought.  I had made so many lifestyle changes leading up to that year.  I had been regularly exercising, eating healthy, etc.  I felt fit as a fiddle, and was able to do things I'd never done before.  There was only one little issue that I couldn't escape... erectile dysfunction.  I promised my wife I would talk to my doctor about it.  She did a blood test to check my testosterone.  My testosterone was fine, but my blood sugar was in the 800's.  I was in Kansas for training when I got the call that they needed to see me ASAP for further testing.

Anyway, long story short, I was only misdiagnosed for about a month, because I asked if they had done an antibody test, which they hadn't, so I had one done, and boom... my endo told me the results were literally off their charts high.  I was a T1, not a T2.  I started on insulin therapy immediately.

Other than the surgery for the deviated septum that led up to my osteomyelitis, I've only had one other surgery, and that was a cardiac cath about a year and a half before.  No other injuries.  I'd only had 2 stitches in my life, and they were for the cath procedure.

I have been involved in emergency services as an EMT/Firefighter/Police Officer for over 25 years.  I have been exposed to more stressful events during that time than I could ever count, and have been exposed to blood/body fluids as well (it's a job hazard).  I've been tested every other year for HIV/AIDS/Hepatitis because of the exposures I've encountered, and have always tested negative.

I'm currently in the process of getting my records for my pension program, as I have filed a medial retirement claim with them, but other than that, I probably could get a complete record of everything.  I have no doubt that my issues have got to connect somewhere, but the "specialists" so far have all only been focusing on the ones that are in their area of expertise, instead of trying to connect the problems with something bigger.  I don't know if it is even possible to get unredacted medical records privately.

Anyway, I hope these answer your questions, if not, please let me know.  I'll answer them as best as I can.
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2106219_tn?1351973556
I'm sorry to hear about all you have been through.  That does sound so frustrating!  I've only been dealing with this for a little over a year and doctors for about 6 months and I'm already frustrated.  It sounds like you've been dealing with the frustration for quite some time!

I hope that your appointment in July will provide you with some answers!
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1530171_tn?1362547225
Key points observed:

1. Hashimoto's presents mainly Hypothyroid function but occasionally cycles between Hypo and Hyperthyroid states.
2. The higher fever environment is not consistent with the Hypothyroid function.
It is more indicative of a low grade infectious condition.
3. The EBV and Rocky Mountain Spotted Fever antibodies from the lab reports where probably not clinically significant (as no action was taken),
to warrant further investigation or???
"Long-term health problems following acute Rocky Mountain spotted fever infection include partial paralysis of the lower extremities, gangrene requiring amputation of fingers, toes, or arms or legs, hearing loss, loss of bowel or bladder control, movement disorders and language disorders"
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Continued.
source: wikipedia

4. RMSF could not have been detected with your annual tests at work,
yet could be work related- transmitted by blood or other bodily fluids.

5. Osteomyelitis is an inflammation of the bone marrow and surrounding bone due to an  INFECTION!!!
Should the underlying cause (the infection), be still lingering around,
the mechanism responsible for the osteomyelitis has not been eliminated.

6. Fundamental root causes of imbalances responsible for inflammation,
infectious conditions, immune system deterioration, all leading to cell
apoptosis and consequently organ and system(s) dysfunction,
HAVE NOT BEEN CHECKED AT ALL!!!
There are  simple tests available to test for inflammation, fungal infections,
metabolic impaiment, deficiencies, PH levels etc.

7. Your pain management  medications are probably the most addictive!!!
Exercise extreme caution, as your life, without realizing can be hijacked!
I would recommend that you immediately find a specialist to help you
with this by weaning you safely off oxy and morphine and get you into something safer.

8. Infectious disease specialists are not going to help you much ,
should the underlying infection be anything like Lyme Disease
or Pathogenic Mycoplasma. The protocol dictated by the
Infectious Disease Society of America, does NOT allow for proper
DX and treatment. Most doctors will not risk their careers , breaking protocol by properly helping their patients.
Only LLMDs will help with this. That's why they are few and far between
and most of them work "incognito".

Please, feel free to comment on the above points and observations.
There are a few things that  can be done. I'll post again later this week.
Take care.
Niko


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1548028_tn?1324616046
I am so sorry to hear what has been happening to you with no answers.  I do understand.  My son is now 13 yr old and it all started at age 11.  "Highly Suspected MS" is what we are told but still not a diagnosis.  Very frustrating for sure!  Maybe you can explain to me about the Ebstein Barr +.  My son was + also but never had mono.  They say that EBV+Encephalitis=Demylination and then triggered MS (maybe...it's always I don't know, maybe, probably) but yet then others act like EBV is not a factor.  What have you been told?  Just curious.
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Epstein-Barr virus (EBV), or human herpesvirus 4,  infects more than 95% of the world's population.
Encephalitis is a complication of ebv caused by an A/I or infectious condition.
If your son was not DXed with encephalitis, then chances are that the ebv
antibodies are constant. A change in numbers is indicative of their change of state, as they're no longer latent and that should be monitored closely.
There are probably other factors present.
For now attention should given to strengthening the immune system and
prevention. The myelin sheath and the nerves have the amazing ability to regenerate. Consider getting a holistic doctor/practitioner to help you with
this and to find underlying issues.
As I had mentioned before, vaccinations can impact  a child's health and the immune system, very negatively. Doctors will not be co-operative
in such cases  to verify this and you can understand why.
Establishing this possible connection, puts THEM and their careers at risk!
Please refer to my original post on this matter.
Blessings to you and your family.
Niko
With conventional medicine and doctors it may be too late when you get
answers.
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Avatar_f_tn
Red Ruby - have you heard of Lyme Disease yet?  I got mine in Australia 6 years ago. (I was on holiday...I live in No. California.). Doctors in Oz know even less than doctors here.

Check out Dr. Peter Mayne's website.  He is in Laurieton, NSW. He is one of the few doctors there who are learning how to treat the disease.  

www.drmayne.com

This might also help.   http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf
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Avatar_m_tn
I have another appointment with my neurologist on Wednesday.  I don't have a lot of respect for him giving his lack of concern or care for me during my last appointment with him.  I do not know if any testing was done for lyme disease, but I don't know who I would even talk to locally about that.

As I said before, I think I've got more than one issue going on, but I could be wrong.  The joint pain I feel may very well just be arthritis.  The only part I've had any problems finding an explanation for is the water retention.  I suffer from 3 to 4+ pitting edema in my lower legs/ankles.  It doesn't effect my feet at all.  When I wear my compression stockings, the water retains around my knees.  It's easier to walk, but of course my knees start hurting.

I don't know, in reading what I can find about lyme disease, I have some symptoms that match, but not enough to convince me it's the right thing to look at.  I'd be interested in talking more, or researching it more if someone has a better thought on where I should look.

D
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Avatar_f_tn
I found a very detailed symptom list on another online support group.  I'll paste it in the following post.  It is a consolidated list of Fibro, Chronic Fatigue (ME), and Lyme symptoms.

Lyme mimics many things, and can of course be present with something else, further confusing things. It can also have coinfections that complicate things further. Of course all the false negatives on the blood tests don't help at all.  Everyone has their own unique constellation of symptoms, but there are also some consistent themes to the illness.  In particular, symptoms come and go, and wax and wane. Certain deficiencies show up, such as magnesium and B12 and D3. And a number of other trends.  Because it mimics so many other things, it can take patience and persistence to rule things out until you get to an answer.

In addition to a Western Blot (preferably at IGeneX), there is a blood test for an immune cell called CD57.  It is only suppressed in HIV and Lyme. Every Lyme patient I have heard of who had this test scored low on it. There is also a very useful culture test available now, but you'll probably have to pay for most of it.  Don't know if insurance covers it yet.
See www-advanced-lab.com

This link was really helpful for me in figuring out I had it.
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

There's also good info on www.ilads.org and www.columbia-lyme.org.

Consolidated Symptom List
The only two I haven't validated elsewhere as symptoms of Lyme are
  -Wandering / Lazy eye
  -Very attractive to biting flies and mosquitoes
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Master Symptom List for Lyme - Part 1

AUTONOMIC NERVOUS SYSTEM/ENDOCRINE/IMMUNE/HORMONE:
Abnormal sensitivity to hot or cold
Allergies (nasal, other; new, increased or worsening)
Canker sores (frequent)
Chills and/or shakes when hungry (may occur instead of feeling hungry)
Cold hands and feet
Extreme fatigue after minimal exertion
Feeling hot or cold often
Flu-like symptoms, on-going or recurrent after initial gradual or acute onset; includes mild fever (99.5-101.5 F / 37.5-38.6 C), chills
Hair loss (alopecia)
Herpes simplex or shingles rash
Increased susceptibility to infections
Low blood pressure (below 110/70)
Low body temperature (below 97.5)
Lymph nodes painful, swollen (in neck; under arms)
Night sweats (not related to menopause or fever)
Orthostatic Intolerance (neurally mediated hypotension)
Reactive hypoglycemia and insulin resistance
Thirst, increased
Thyroid inflammation (acute thyroiditis; hypothyroidism; Hashimoto's thyroiditis)

CARDIOPULMONARY/RESPIRATORY/CIRCULATORY:
Cardiac abnormalities (mitral valve prolapse; myocarditis; tachycardia; palpitations; dysrhythmia)
Cough
Dyspnea (out of breath) or shortness of breath (air hunger) after minimal or no exertion
Heart attack
Heart pounds so hard it shakes body, bed
Sighing, frequent, not related to mental/emotional state
Stroke
Vasculitis

CENTRAL NERVOUS SYSTEM/NEUROLOGIAL/NEUROPATHIC/OTOLOGIC:
Abnormal CAT, MRI and/or SPECT scans
Alcohol intolerance
Aseptic meningitis
"Brainfog"; inability to think clearly
Difficulty moving tongue to speak
Diminished or absent reflexes
Fainting or blackouts; feeling like you might faint
Headaches (frequent, severe, recurring)
Hearing changes, often from day to day (need to turn up, then down, volume of radio, TV)
Libido (decreased)
Light-headedness, feeling spaced-out
Migraine headaches
Muscle twitching
Noise intolerance
Paralysis or severe weakness of limb
Parasthesias (numbness, tingling, crawling, itching sensations) in face, head, torso, extremities
Photosensitivity
Radiculitis
Seizures; seizure-like episodes
Sensory alterations (hyper- or hyposensitivity) - smell, taste, hearing (noise intolerance)
Severe muscle weakness
Syncope (fainting)
Tinnitus (ringing/noises in one or both ears)
Touch or weight of clothing on or against body causes discomfort or pain
Tremors, trembling

COGNITIVE FUNCTION:
Becoming lost in familiar locations when driving
Difficulty with simple calculations (e.g., balancing checkbook)
Difficulty expressing ideas in words
Difficulty moving your mouth to speak
Difficulty making decisions
Difficulty following directions while driving
Difficulty remembering names of objects
Difficulty remembering names of people
Difficulty recognizing faces
Difficulty following simple written instructions
Difficulty following complicated written instructions
Difficulty following simple oral (spoken) instructions
Difficulty following complicated oral (spoken) instructions
Difficulty integrating information (putting ideas together to form a complete picture or concept)
Difficulty putting tasks or things in proper sequence
Difficulty paying attention
Difficulty following a conversation when background noise is present
Difficulty making and/or retrieving memories (long/short-term memory deficits)
Difficulty understanding what you read
Easily distracted during a task
Feeling too disoriented to drive
Forgetting how to do routine things
Forgetting the use of common objects (e.g. what to do with shampoo in the shower)
Forgetting how to get to familiar places
Impaired ability to concentrate
Losing your train of thought in the middle of a sentence
Losing track in the middle of a task (remembering what to do next)
Poor judgment
Switching left and right
Slowed and/or slurred speech
Stuttering; stammering
Transposition (reversal) of numbers, words and/or letters when you write and/or speak
Word-finding difficulty
Using the wrong word
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Master Symptom List for Lyme - Part 2

DIGESTIVE/HEPATIC:
Bloating; intestinal gas
Decreased appetite
Digestive chemicals (acid, enzymes) reduced or absent
Esophageal reflux; heartburn
Frequent constipation
Frequent diarrhea
Food cravings (especially carbohydrates, sweets)
Food/Substance intolerance
Irritable bowel syndrome
Liver function impaired; mild abnormalities
Increased appetite
Nausea
Spleen tender or enlarged
Stomach ache, cramps
Vomiting
Weight gain or loss

EQUILIBRIUM/PERCEPTION:
Bite your cheeks or tongue frequently
Bump into things frequently
Difficulty discriminating printed matter despite proper vision correction
Distances (difficulty judging when driving; when putting things down on surfaces)
Dizziness or vertigo
Dropping things frequently
Dysequilibrium (balance problems)
Impaired coordination
Loss of balance when standing with eyes closed
Perception (not quite seeing what you are looking at)
Some patterns (stripes, checks) cause dizziness
Spatial disorientation
Staggering gait (clumsy walking)
Words on printed page appear to jump off page or disappear when staring at them

EYES/VISION:
Acuity changes not related to prescription changes
Blind spots
Blurred vision
Conjunctivitis
Diminished visual acuity in absence of actual vision change
Drooping eyelid
Double vision
Eye pain
Flashes of light perceived peripherally
Optic neuritis or atrophy
Oscillopsia (image jiggles)
Prescription changes more frequently
Pressure sensation behind eyes
Red and/or tearing eyes
Retinal damage
Slowed accommodation (switching focus from far to near, near to far)
Spots or floaters not related to migraines
Swelling around eyes
Uveitis and/or iritis
Wandering or lazy eye

HEAD/NECK/MOUTH:
Bell's palsy (facial paralysis, one or both sides)
Bruxism (grinding/clenching teeth)
Canker sores
Dizziness when you turn your head or move
Dry chronic cough
Dry eyes, nose and mouth (sicca syndrome)
Pain in ears, palate, gums
Periodontal disease
Prickling pain along skin of jaw
Problems swallowing, chewing
Runny nose in absence of cold, allergies
Sinus infections
Sore spot on the top of your head
Temperomandibular Joint Syndrome (TMJ)
Unexplained toothaches
Xerostoma (dry mouth)

MUSCULOSKELETAL:
Joint or arthritic pain not relieved by NSAIDs (i.e., ibuprofen)
Arthritic pain that migrates from joint to joint
Joint pain(arthralgia), without redness or swelling
Carpal tunnel syndrome
Frozen shoulder
Intermittent joint swelling
Loss of tone
"Lumpy, bumpy" long muscles
Morning stiffness
Muscle aches (myalgia)
Muscle pain, stiffness, weakness
Pyriform muscle syndrome
Reduced range of motion
Stiff neck
Writing causes pain in hand, arm shoulder

PAIN SYMPTOMS:
Abdominal pain
Chest pain
Generalized pain
Pain/stiffness at C1-C2 (top two vertebrae)
Shooting or stabbing pains

PSYCHOLOGICAL SYMPTOMS/MOOD/EMOTIONS:
Abrupt/Unpredictable mood swings
Anxiety or fear for no obvious reason
Appetite increase/decrease
Decreased self-esteem
Depression or depressed mood
Feeling helpless and/or hopeless
Frequent crying for no reason
Inability to enjoy previously enjoyed activities
Irritability; over-reaction
New phobias/irrational fears
Panic attacks
Phobias (irrational fears)
Rage attacks; anger outbursts for little or no reason
Suicidal thoughts or suicide attempts

SENSITIVITIES:
Acute or abnormal reactions to medications
Sensitivity to odors (able to detect and/or react in concentrations far lower than before and that healthy people cannot smell)

SKIN/NAILS:
Abnormal scarring
Acrodermatitis Chronica Atrophician
Blotchy or mottled skin
Bruise easily
Bruises may take longer to appear, and/or longer to fade
Bull's-eye (Erythema migrans) on light skin (resembles a bruise on dark skin)
Dermographia (minor scratch pressure on skin leaves vivid red welts)
Dry, itchy skin
Easily scar
Eczema or psoriasis
Fragile nails
Frequent skin irritations
Lymphadenosis benigna cutis
Nails that curve under or downward
Overgrowing connective tissue (ingrown hair, adhesions, thickened/split cuticles, cysts, fibroids)
Painful skin (abnormal/excessive pain when scratched or rubbed)
"Paper" skin (feels fragile, tissue-thin when rubbed)
Rashes on body, face
Vertical ridges or beads in nails

SLEEP SYMPTOMS:
Abnormal brain activity in stage 4 sleep
Altered sleep/wake patterns (alert/energetic late at night, sleepy during day
Difficulty falling asleep
Difficulty staying asleep (frequent and/or prolonged awakenings)
Hypersomnia (excessive sleeping)
Myclonus (restless leg syndrome; occasional jerking of entire body)
Nightmares (frequent, extremely vivid and/or disturbing)
Unrefreshing/Non-restorative sleep

UROGENITAL/REPRODUCTIVE:
Decreased libido
Discharge from breast or galactorrhea
Endometriosis
Frequent urination
Incontinence
Impotence
Infant: premature; low birth weight; low muscle tone; failure to thrive
Interstitial cystitis
Miscarriage or stillbirth
Painful intercourse
Painful urination or bladder
Pelvic and/or rectal pain
Prostate pain
Swollen testicles
Other symptoms worsen before start of menstruation
Worsening of PMS symptoms

OTHER:
Abnormal or other changes in sweating
Activity level reduced to less than 50% of pre-onset level
Burning sensation (internal and/or external)
Changes in sweat odor/body odor
Delayed reaction to overactivity/exertion (onset 24-48 hours after exertion)
Electromagnetic (EM) sensitivity (electrical storms, full moon, affect function of electrical devices)
Fatigue, prolonged, disabling, made worse by exertion or stress
Fibrocystic breasts
"Galloping" cholesterol and triglycerides
Hair loss (not related to age, hormones, diet, medication)
Hands hurt excessively when put in cold water
Handwriting changes, altering signature and/or other writing
Hoarseness / Changed voice
Painful, weak grasp that gives way/lets go
Periods of concentrated thinking causes physical and mental exhaustion, increases pain
Sore throat
Swelling/Idiopathic edema (fluid retention syndrome)
Symptoms worsened by extremes of temperature (hot, cold), stress, and/or air travel
Symptoms change focus from time to time, like infection is moving through the body
Thickened mucus secretions (nose, bowel, vaginal)
Thickened "sleep" around eyes in mornings
Very attractive to biting flies and mosquitoes

Sources:
Fibromyalgia & Chronic Myofascial Pain. Devin Starlanyl & Mary Ellen Copeland. 2001. New Harbinger Publications Inc.
Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses. 2001. Katrina Berne. Hunter House Publishing.
The Interface of Chronic Lyme Disease, CFS and FM. Bonnie Gorman. In, The Update. Massachusetts CFIDS & FM Association. 18(3):1, 35-40. Fall 2002.
Arthritis Foundation
American College of Rheumatology
Fibromyalgia Network
Centers for Disease Control & Prevention: CFS
Jay Goldstein, MD.

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Thank you for the links you sent for me to look at.  Recently there had been a program on TV channel about Lyme Disease and I am aware it has similar symptoms to MS.

I had not been bitten by any ticks ever. However we had a working sheep dog in Tasmania which did have ticks, and my husband removed them from the dog.  Can you get infected if you touch the area of the dog where the tick was removed from?

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Lyme spirochete is not just tick-borne; it can also be transmitted by other insects, including fleas, spiders, mosquitoes and mites — and by human-to-human contact
through bodily fluids -blood, saliva,semen - and this would extend to any contact with infected animals.
Many are unsymptomatic, but the Lyme spirichete still gets transmitted, and that
is very tricky, as there's absolutely no suspicion.
Sorry for the bad news, but good in a way, as we can all exercise prevention,
by strengthening our immune systems to the max possible and DISTRESSING!
Have a good day!
Niko

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I doubt you could get Lyme from removing a tick from a dog or touching the bite mark, especially if there are no open wounds on the skin.  I did read about a guy who got it when he cut himself while cleaning a pheasant without gloves.  He quickly developed a full blown case of Lyme. Birds and many mammals, including dogs can have it.

Many people with Lyme never saw the tick that bit them. The nymphs can be tiny, like the size of a poppy seed, and can hide in places like the scalp, behind the ear, in folds of skin, and other places. In Oz, they are seeing cases from the Northeastern coast all the way down into parts of Victoria, with most cases in Queensland and NSW.  
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All i can say to that symptom list is OMG.

It took my breath away.x
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Ok, I saw my neurologist on Wednesday.  For the first time, he got to see my condition in full force.  The last time we went, we waited in the waiting area for a very long time and my body had time to relax.  This time, we had just come in from a long walk in the parking lot, through the building, up the elevator to the wrong floor, back to the elevator to the right floor and then to the reception area.  We had *just* sat down when the nurse came out to get me, and almost as soon as she left the room, in walked the doc.  We could hear the nurse talk to the doctor in the hallway.  She said:

"His spasms are much worse this time, and when he first got in, he was very diaphoretic and pale.  His color has improved since he sat down and started calming down, but his spasms haven't subsided much."

She originally had asked if I may be going hypo (glycemic) since she knows I'm also a T1 diabetic, but I had tested my blood sugar before we left the house, and it was 199 (of course, I had just eaten lunch an hour before, so that's not a big deal).  Anyway, unlike the last visit, the doctor totally took me seriously this time.  He showed great concern, listened closely to every word I had to say about my condition, and held great hopes for the follow-up appointment that I demanded in St Louis with the specialty clinic.  I left feeling vindicated.  He did put me on baclofen for the spasms, it makes me feel weird, but for about 2 hours after I take the medication, the head tremor stops, which is such a blessing, because even though it's minor muscle movement compared to the rest of the tremors and spasms I get, it totally wears me out through the course of a day.

Now, after I got home, I decided it was time to play detective.  I made a phone call to the Infectious Disease (ID) specialist I originally had 2 years ago.  Understand, switching doctors was not my choice.  The company I worked for at the time changed insurance carriers which put us under a different health care system.  It totally sucked because I was an acute care handoff, as I was still under treatment for the acute vertebral osteomyelits that landed me in this position to begin with.  Anyway, I called the ID to see if they had ever run any tests specifically for Lyme disease.  She took my name and number and said she would call me back.  Surprisingly, she did so in about 30 minutes.

One thing I miss about the old health system... the entire practice, from family physician on up to the most senior of specialists are all on the same system, and the record my family doctor made entries on was the same record my specialists made entries on, so everyone could see EVERYTHING the other was doing.  My current health system doesn't have that at all, so I have to play the waiting game.  But I've gotten on another tangeant.

Anyway, the nurse told me that on August 31, 2010, my PCP had run a blood test that she thinks may have been for Lyme, but she said since it wasn't her doctor that made the order, she couldn't give me any details on the results (even though it was right there in front of her).  No sweat, I called my old PCP's office and had the privilege of talking to my old PCP's nurse, who is by FAR my most favorite nurse in the world.  Anyway, Carol told me that it was indeed a test for Lyme disease, but she didn't know how to interpret the results, so she had to ask my former doctor about it.  I got the call this morning, it was definitely a test for Lyme, but it was negative.  So there we have it.  I've had the fever and most of the problems associated with it for many years, but Lyme has been ruled out.

My next appointment with a specialist remains in July at the Movement Disorder's Clinic at Barnes Jewish/Washington University Hospital in St Louis.  I'm all ears if anyone has any other ideas.  I don't think it's Lupus.  I appreciate all the insights people have given to this point, so please keep it coming.
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http://www.medhelp.org/posts/SURVIVING-NEUROLOGICAL-LIMBO-LAND---NO-DX/NEVER-TRUST-A-NEUROLOGIST/show/1716268
Go to the" Ricobord reply to Nikodicreta"

Also a paragraph from one of my replies on this thread:

"8. Infectious disease specialists are not going to help you much ,
should the underlying infection be anything like Lyme Disease
or Pathogenic Mycoplasma. The protocol dictated by the
Infectious Disease Society of America, does NOT allow for proper
DX and treatment. Most doctors will not risk their careers , breaking protocol by properly helping their patients.
Only LLMDs will help with this. That's why they are few and far between
and most of them work "incognito".


This is a HUGE defect in the system, with tens of thousands of sufferers left in limbo! (I'm no alarmist or conspiracy theorist, this is REAL)
Just go to the Infectious Disease Society of America own website,
and judge for yourself. They're not only a joke, they are a disgrace to
society how they approach such serious diseases!!!
And unfortunately they make the rules with the support of CDC, FDA
and their powerful friends (you know who).

Also you may want to check this book out:
Autoimmune : The Cause and the Cure

This Book Identifies  some of The Causes And The Cures For:
Chronic Fatigue Syndrome, Fibromyalgia, Lupus, Sjogren's, Rheumatoid Arthritis, Raynaud's, Rosacea, Myathenia Gravis, Hashimoto's, Type 2 Diabetes, Multiple Sclerosis, and more.
It's an eye opener for most!

Hang in there. The search has just began.
Niko
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? I'm not sure what you are trying to tell me there.  I was specifically tested for Lyme disease by my PCP.  I tested negative. If I'm missing something, please reiterate it.

D
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I think what Niko is saying is that many times (many times) people are tested for Lyme's disease by doctors and the test comes out negative when you actually do have Lyme's.  

Since I have been a member of Medhelp I have read many stories of people who have had symptoms for years, where tested by this or that doctor, and results were negative.  Years later, they have full-out neurological Lyme's.

An old member of this forum, in fact, is one.  There have been many over on the MS forum too.  I bet if you checked out the Lyme's disease forum and asked them over there how many tested negative, there would be a lot.

I think what you need to do is find a LLMD (a lyme-literate doctor).  They can help in this area but are few and far between.  I think, if I remember correctly, that there aren't many in the US.

Niko and a newer member, Ricobord, are very knowledgable on this.  They should/will come along to answer more specifically.  Hope this helps!!!  And glad your spasms are feeling a little better!  I HATE spasms!!  One of my more bothersome symptoms.
Sarah
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Sarah did put it in a nice and simple way to understand it.

It is absolutely vital, that sufferers presenting symptoms like yours,
should  rule out 100% beyond any reasonable doubt, Lyme Disease.

The reason is, that it presents such a wide symptomology,
that it can mimic just about any serious disease out there.

I don't mean to sound like a broken record, but here's an overview
of the situation, that I prepared last year before the holidays.

Some information to help some members understand what they might be up against, and why must  become more focused, knowledgeable, proactive and stronger (as in Mind and Spirit.) and less trusting
that our doctors and the system will take good care of our health matters.

Lyme Disease along with all the other hard to detect Pathogenic Infections, including Pathogenic Mycoplasma Infections and the numerous diseases initiated by those infections (Arthritis, CFS,MS,FMS,Parkinsons,ADD etc.) are probably the most under or Un-Diagnosed diseases in the western world.
  IDSA (Infectious Disease Society of America) is THE dominant force in diagnosis and treatment of Infectious disease policy and protocol,
influencing CDC and most Health Authorities and Medical Doctors.
Their view of Lyme and Pathogenic infections is pathetically narrow and controversial.  

From their own website: "IDSA sent a letter to the House Energy and Commerce Committee opposing the Lyme and Tick-Borne Disease Prevention, Education, and Research Act".  Why??????
For entertainment purposes, go to their website and watch the short video.
It is a tragicomedy. Do they actually believe it themselves?

Their position that Pathogenic Mycoplasma Infections and Lyme disease
are NOT chronic conditions is welcomed by Insurance, Employers (like the U.S Goverment) Pharmaceuticals and other parties who otherwise would stand to lose millions in claims or lost profits.

Many IDSA so-called experts have testified against medical doctors
who have treated such infections outside the IDSA rigid  protocols.
Do not be surprised if your Doctor downplays the possibility of Lyme or other Pathogenic Infections ( avoiding being black-listed or harassed) , or if you keep getting negative results from all the various tests, consistently.
( A few Labs were suddenly closed after positive findings of Incognitus Fermentans Mycoplasmas-
IGeneX, the only reliable reference Lab, has survived so far.
I'm planning a meeting  in the future with Professor Donald Scott - I live just a couple hours away-as he has in his possession relevant official US and Canadian government documentation regarding extremely controversial events and actions in connection with these Infectious conditions.)

I strongly suspect that the interests of  health authorities, CDC, FDA,do not coincide with the interests of the people suffering from these conditions.
( Search for " Public Law 107–116-" when FDA and CDC were ordered to comply with better testing and diagnostic procedures for Lyme .  It was a step in the right direction , however, NOT MUCH has changed 10 years later-my opinion only- as these agencies are largely self-regulated)

Should one of their high ranking directors get something like Lyme disease,I wonder how they would approach it. LOL!

Another time I will explore inefficiencies, limitations and faults of Tests and Labs.

Hope this helps shed some light.
Niko
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