Confused

[AngleKisses02]

I have been sick since January 2012. I got Mono at work and haven't recovered since....6 long months.
My doctor has been trying to figure it out but no success.  I'm tired all day and can't stay away for more than 6 to 8 hours a day. I hurt all over, have problem with short term memory, I say things backwards or out of order, I have started having muscle spasms on and off, headaches to migraines daily, I drop things all the time, and can't always say what I want to say, and the more I exercise the more tired I am.  I have had my thyroid checked, blood work done for autoimmune disorders and all came back normal.  I am currently being treated for fibromyalgia and chronic fatigue disorder with the RX Savella and its not helping. My doctor is looking into getting a spinal tap done to check for MS. I haven't found much info on MS that fits all the symptoms.

Please if anyone has any information that may help, please let me know. I'm just sick and tired of being sick and tired.

[AngleKisses02]

Thank you for your kind words.  Lumbar puncture went ok.....as well as a huge needle in the back and laying in a hospital bed for four hours....lol

Awaiting test results. It's hard to want the test to come back negative because that means no answers to this annoying issue. My heads high and ready for what ever comes my way!!!

[twopack]

Hi there AK2.  Hope your LP went smoothly and you are resting and replenishing your fluids now.  Also hope this batch of tests pays dividends in answers.  We're waiting with you and sending healing thoughts your way.

Mary

[AngleKisses02]

Went to the DR today and they are doing a lumbar puncture tomorrow morning and drew more blood.... hope I get some answers soon.

thank you all for your help

[Ricobord]

Yet another typo...sorry, I meant assumptions about Lyme tests in the 90's.

The CDC surveillance criteria was developed in 1994 by the same guy who was expecting to make a fortune on an up and coming Lyme vaccine.  He left out the two most specific Lyme antibodies that were used to develop the vaccine because they would show up in vaccinated patients regardless of whether they had Lyme or not. Therefore, the tests were designed to avoid false positives in vaccinated patients. But then the vaccine was a disaster and was pulled off the market.  It is just silly now that you could show these Lyme specific antibodies/bands and still be told you don't have it.

[Ricobord]

Ditto MrsAristotle.  I tested negative for Lyme in my CSF and in the blood screening test.  The tests are too often false negative, unlike the near perfection that was assumed of them back in the 80's.

See if you can get a Western Blot from a lab that will show specific 'bands' or antibodies in the results.  Many people show antibodies unique to Lyme, but different than the CDC surveillance criteria. The CDC testing protocol was designed to give a minimum of false positives, knowing they would miss some cases.  If was for sampling and monitoring trends in the disease.  Somehow it became assumed to be a diagnostic absolute.

IGeneX is a specialty lab known for doing more advanced testing and finding cases that others miss.

[MrsAristotle]

dont trust negative Lymes test. I know someone who was told they were negative in the UK.

She got iller and iller and then went to a lymes literate private clinic, they took tons of bloods for Lymes and western blot and stuff and sent it to Igenex in the states and the results came back POSITIVE for LYMES.

maria

[supermum_ms]

I'm not sure if this is helpful or not, but a few years ago my daughter was dealing with similar sx, it was suspected mono but the tests showed she'd already had it, which was a bit odd considering she'd never been this sick before. Lots of blood tests later and nothing really showed up, anyhooo her dr believed it was under cooked pork, something commonly enough associated with chinese take away. There is a name but i can't remember it now, it supposedly mimics mono so it might be worth having a google to see if something like it is possible.

As i said, not sure if its helpful or not but it just popped into my head and i thought i'd pass it on. lol feel free to ignore :o)

Cheers..........JJ  

[AngleKisses02]

I love to be outside and go camping, so Lyme disease is a possibility but test came back negative.  Going to DR. tomorrow and run everything everyone has given me by him to double check everything again. I have EBV  .  I had a horrible headache in the back of my head that was almost as bad as a migraine but it was like some one hit the back part of my skull.

Thank you for everything, I greatly appreciate it.

[Ricobord]

If it's not meningitis, could you have been exposed to Lyme Disease?  Abbout half of patients don't recall a tick or a rash. I have had both a bad case of mono and a bad case of Lyme.  The fatigue felt the same.  When I had Lyme, I thought I was getting a mono flareup.  Also, Lyme suppresses the immune system, leading to many different possible elevated virus levels.  EBV is one of them.

I felt incredibly weak with mono, but I am not familiar with muscle pain or spasms as a symptom of mono.  Muscle pain is one of the most common symptoms of Lyme.  Lyme also causes a meningitis like effect with cognitive symptoms, headaches, and even migraines.

Fibromyalgia and CFS/ME are two of the most common misdiagnoses for Lyme patients, along with autoimmune disorders (such as MS, Lupus, ALS).

[AngleKisses02]

Thank you for your comments.. they gave me some ideas.  The blood test show I don't have mono any more.  The symptoms are increasing daily and now I have several muscle spasms every day.

[HVAC]

Mono is a rough illness. I had a bout for a year starting in 2007. I could not even talk for months and was bed ridden. The problem is there is not much medical science can do for it since it is a virus and has to run its course. I went to Whole Foods and got their immune booster and that seemed to make the biggest difference in finally working my way out. I also drastically cleaned up my diet. I finally got over it.

Sounds like you have a good doctor who is looking at all possibilities. It may take awhile to figure things out. I know this is frustrating. The truth is there are many medical things that are not easy to diagnose.

Are you at least getting help with symptoms? They can give you things for fibro pain only those drugs cause tiredness and mental confusion so it is a trade off.

Alex

[Deb61]

A colleague of mine was having neurological symptoms.  His spinal tap revealed menigitits.  The spinal tap may help your doctor figure out, too, if there's a infectious disease process effecting your central nervous system.

There could be other problems causing our symptoms besides MS.  Are you seeing a neurologist?  If not, you may want to see one.  An MRI may also be helpful, but not all MRI machines are equal.  Keep that in mind if you get one.