Doctors not listening

[jmartin425]

My sister, 1 month after being bite by a tick, devloped petechiae all over her body, a low grade fever, severe muscle aches, numbness in extremites that change in location. She was hospitalized with elevated CPK and they completed the test to rule out tick bourne illnesses.  All illnesses from ticks were ruled out.  At this point they began to think a severe sudden onset Lupus.  However, all tests including Spinal tap indicated no lupus.  Spinal tap was WNL.  When her CPK lowered she was sent home from the hospital.  She went to the doctors who stated she believes that it is still lupus and started my sister on Prednisone.  A week after startign the prednisone, she developed Plursy.  Muscle aches continue, numbness continues, her pupils spontaniously becomes unequal and unreative, One eye or the other, not at same time.  She states she has woken in the middle of the night and unable to take a breath in.  She does not have asthma or COPD.  We had her home, which is in North Carolina tested for mold and found extreamly high and dangerous levels of aspergillosis.  My sister works from home and in in the house nearly 24/7.  Other then moments of colds and constant issues with Strep throat, she had good health.  
Doctors she has went to stated that there is no disease associated with this fungus.  However, I have researched different information.  This fungus does cause the syptoms that my sister is having.  My sister has moved out of her home, and plans not to return.  Doctors believe that she can not have an issue with the fungus because she is not immunocompromised.  The doctor today told her that it sounds like MS.  But to my understanding, CPK does not elevate with MS and the spinal tap was clear.   Also there is not Lupus in our family or MS.  Any suggestions would be appreciated.
Thank you.

[Lulu54]

The tick borne illnesses are screaming at me too as a possibility.  There has been lots of medical coverage lately on this growing epidemic.  And we know all 50 states now have infected ticks thanks to migrating birds.  This can be hard to connect with the right doctor who will connect the dots.  Don't give up with her until there are answers.  

I am no medical person, but speaking from my knowledge this doesn't sound like MSTo me.

Good luck and feel free to come back and ask more questions or visit the xcellent Lyme forum here - they know everything plus sme and are very helpful.

[Ricobord]

I just had a sudden realization that your sister's symptoms sound very much like Rocky Mountain Spotted Fever.  Her doctors probably tested her for it, but when I read up on it, it said that negative biopsies and blood tests cannot exclude the disease, and that it should be diagnosed on symptoms, especially with the spotted rash, as the disease can become very serious. It can affect the heart and liver, which could explain her elevated CPK.

This website could be helpful.  Be sure to click on the link for the slideshow.  They show a picture of the typical rash. http://www.medicinenet.com/rocky_mountain_spotted_fever/page4.htm#

If her doctors wom't treat her immediately, get her to an LLMD who knows how to make a clinical diagnosis.  She could easily have another tick borne disease along with it.  Ticks can carry and transmit multiple diseases in one bite.

[Gio77Italy]

fungal infection of the CSF should have showed up on spinal tap right?

if u think that mold is the cause of the problem she could try a couple of weeks on Itraconazole if you find a doctor wanting to prescribe it. it's toxic for the liver but not so bad I guess.

[Threewheelmobile]

Go to a homeopathic physical therapist or  a doctor in the field that can measure any disturbances or vitamine deficincies found in her body. She needs to get out of the house for a walk in the fresh air at least for an hour. Have u tried placing a dehumidifier in the house and open the windows and doors to freshen the house up each day. She probably is allergic to house mite. or dust mite what they call it. She will need to go to the homepath and he or she will test her for chemicals missing from the body.  I have bronchitis which sounds exactly what your sisters symtoms are. The homeopath will probably suggest lachesis mutis...and arsenicum album to help clear the mucus build up in her lungs. but she will have to go get tested . We can not know what is lircking in our genes. Each of us have the cells in our bodies it is just a matter of time  and who is going to develope these symtoms. It is sad but true.  
Homeopathie is the answer to help make my life liveable, I hope it is for her as well.  I get more out of that than all the  worthless visits to  my specialists.
Good luck. xx

[Ricobord]

First of all, negative results for tick borne diseases do not exclude tick borne diseases.  Several of them are a clinical diagnosis, which means they should be diagnosed on the basis of history and symptoms, with tests supporting the diagnosis.  There are also other blood tests that can help reveal what is going on in the body.

Note: My Lyme and Bartonella mimiced MS.  I was also considered for Sjogren's, asthma, sarcoid, and cancer.

If your sister got Lyme disease from the tick, then she would indeed be immunocompromised.  Lyme is known to suppress the immune system, allowing bacterial infections, as well as virus loads, fungus, and yeast to grow and develop.  Lyme patients frequently have serious mold issues and test positive for viruses acquired years earlier, such as EBV and HSV.

Unfortunately, she was given steroids, which is often disastrous for people with tick borne diseases.  It suppresses the immune system, allowing infctions to run wild.  Steroids make the patient sicker and the diseases harder to cure.

Please find an LLMD ASAP for your sister.  This is patient terminology for Lyme Literate MD.  They know how to evaluate symptoms for multiple tick borne diseases and order the appropriate tests, preferably from IGeneX, a specialty lab that finds cases that other labs miss.

This medical document was really helpful for me.
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

You can find an LLMD on the ilads.org website, or from a local Lyme support group.

You are welcome to come post on the Lyme forum to get additional feedback.