Hi all --

I'm a bit new here, and my infectious disease doctor, neurodoc, and I have been trying to profile some unknown bug that's been biting at me in many places.

By bug I mean micro-organism (though it's possible I got bit by a tick and contracted Lyme!).

The bug has temporarily ruined my life (and my brain in the process, and some of that brain ruination isn't so temporary!).

My IDdoc seems stumped as to the mystery bug. It's not just gotten into my nervous system (a decade ago, it was peripheral neuropathy, and it recently exploded in my CNS, causing mild hydrocephalus and micro-infarcts leading to a parkinsonian syndrome with fun dementia) -- the bug's also having fun in my GI tract (episodes of severe diarrhea, occasional projectile vomiting), and yes, in my respiratory tract (I've had a perpetual cold the past 3 months).

Also been having a low-grade (about 101F) fever all day, every single day, the past 12-15 months (!) and recently some abdominal lymph glands were swelling up to the point that it'd get hard for me to breathe (in the meantime, I'd gain 5-10 lbs. without looking any heavier).

My current guess based on my own research (I'm a researcher by trade anyways!) is Aspergillosis, a fungemia (systemic fungal infection). Most of the literature says that it's only present in the immunocompromised, though cases in the immunocompetent are seen. (For what it's worth, my WBC count is a hair below normal and my ANC is at the very bottom of the normality barrel, though this could be due to the infection!)

Anyways, I'm not seeking a diagnosis here, since that's not what these forums are for. I would, however, like some ideas on which bugs to discuss with my doctors. They're stumped, and we're still waiting for me to come off the waiting list and into an appointment at a tertiary care clinic.

Thanks in advance!

(Other notes -- I did have a blood transfusion in 1984, before HIV screening was done in blood banks... BUT I'm negative for that as of last year, when my symptoms were nonetheless in full force.)

This is a total shot in the dark, but have you and/or your docs ever considered a non-genetic type of Ataxia at play? The fact that it's something autoimmune with encephalitis, high fever, Marfan's Syndrome, breathing difficulties, etc. are some of the symptoms that triggered this thought....How are your walking, speech, balance and coordination? Are your symptoms progressive?

As I said before, it's a pretty fat chance -- but it warrants consideration (inquiry to the doc for his/her thoughts, anyway). There are a handful of non-genetic Ataxias out there -- and autoimmune is definitely worthy of further investigation. FYI -- There's a really great pamphlet available, written especially for doctors, entitled "Evaluation and Management of Ataxic Disorders: An Overview for Physicians," which is available through the National Ataxia Foundation. It's a great tool for the doctor, especially because the field of ataxic research is relatively unknown to many doctors (older ones), mainly because of its rareity.

Just a thought...

Hi color --

Thank you very much for your input. My walking is about half the time unbalanced (disability correlating very well with fever temperature and/or time of day/general fatigue). I do have to exercise care, and the act of going down stairs is often my mortal enemy (hanging on to the banister for dear life to avoid a fall).

And the progression... ugh. First came in attacks (2005), then in 12/2006 began a slow, steady deterioration... all autoimmune signs specific for MS were checked and were negative.

Speech articulation is fine except for an attack of dysarthria in 2005... but my pure verbal abilities went downhill and then plateaued early this year (2007).

We are trying to check out autoimmune conditions, but my blood panels are pointing the opposite direction from autoimmune stuff and I had two VERY negative reactions to corticosteroids (given for other reasons) the past year. Corticosteroid apparently = attack city, especially on the GI.

Though, with the Marfan's disease, as you're implying I think, there could be a system-wide issue that suddenly popped up (just as an infection can sit in you for years and then suddenly get at you). There are the mixed connective tissue disorders (which can on occasion have 'marfanoid' physical features along with ataxia and other neuro signs.

Genetically, I was tested for MELAS (a mitochondrial syndrome resulting in high blood lactic acid levels, resulting in multiple small strokes), and that one came out negative.

We checked for hepatic encephalopathy, but my liver's of normal size and the 'big three' enzymes are well within reference ranges. Actually, that's a bit disturbing, given that I'm on 7+ medications.

In any event, I'm still thinking infectious agent for some reason... maybe it's because the issues started in my peripheral nerves, and then creeped into my brain (a perineural invasion, if you will). To my knowledge, this is only seen in infectious diseases and cancers. However, I suppose it is theoretically possible for an autoimmune disorder to start peripherally and then enter into the CNS.

Once again, thanks for the help. I'm seeing my IDdoc a week from now, and he's out of options, and all we're going to do is discuss are external referral, and I now have one to consider.

What testing have you had done for infectious diseases? If they suspect an infectious disease they should avoid any product with steroids in it at all costs as this can suppress your immune system and typically in Lyme and/or Co-infections cause some serious side effects.

As you said it may have been a tick, do you recall when this may have taken place and did they do any testing for Lyme Disease (although testing isn't reliable, it can help sometimes)? Also, if it was suspected did they test for any co-infections such as: Babesia, Bartonella, Ehrlichiosis, Mycoplasma, and Rickettsias.

Below is a partial symptom list for each (there's so many it would take a month to compile). (From anapsid.com)

The following symptoms were excerpted from Diagnostic Hints And Treatment Guidelines For Lyme And Other Tick Borne Illnesses, by Joseph J. Burrascano Jr., M.D. (Fourteenth Edition, November, 2002).

Borrelia
(Borreliosis, neuroborreliosis; also known as Lyme Disease)
Spread primarily though the bite of infected ticks that live on a wide range of mammalian species; secondary human-to-human transmission through semen, breast milk, and possibly in utero

Bladder dysfunction
Burning or stabbing sensations
Cardiac impairment
Change in bowel function
Chest pain
Confusion
Depression
Difficulty thinking
Difficulty with concentration and reading
Difficulty with speech, writing
Difficulty finding words; name blocking
Disorientation: getting lost, going to wrong places
Disturbed sleep: too much, too little, fractionated, early awakening
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
Exaggerated symptoms or worse hangover from alcohol
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Facial paralysis (Bell's palsy)
Fatigue, tiredness, poor stamina
Forgetfulness
Headache
Heart block
Heart murmur
Heart palpitations
Heart valve prolapse
Increased motion sickness
Irritability
Irritable bladder
Joint pain or swelling
Lightheadedness
Mood swings
Muscle pain or cramps
Neck creaks & cracks
Neck stiffness, pain
Numbness
Pelvic pain
Poor attention
Poor balance
Poor short-term memory
Problem absorbing new information
Pulse skips
Rib soreness
Sexual dysfunction or loss of libido
Shooting pains
Shortness of breath; cough
Skin hypersensitivity
Sore throat
Stiffness of the joints or back
Swollen glands
Testicular pain
Tingling
Tremor
Twitching of the face or other muscles
Unavoidable need to sit or lay down
Unexplained breast pain
Unexplained fevers, sweats, chills or flushing
Unexplained hair loss
Unexplained menstrual irregularity'
Unexplained milk production
Unexplained weight loss or gain
Upset Stomach or abdominal pain
Vertigo
Wooziness



Babesia
(Babesiosis)
Babesia is a protozoan spread by ticks, blood transfusion, and in utero. Despite there being 13 known forms to date, current testing only looks for two of them.

Air hunger
Cough
Fatigue
Fevers
Headache
Hemolysis
Imbalance without true vertigo
Mild encephalopathy
Shaking chills
Sweats



Bartonella
(Bartonellosis, also known as cat scratch fever)
Spread by bites from infected ticks and in utero

abnormal liver enzymes
encephalopathy
endocarditis
flu-like malaise
headache
hemolysis with anemia
hepatomegaly
high fever
immune deficiency
jaundice
lymphadenopathy
myalgias
myocarditis
papular or angiomatous rash
somnolence
sore throat
splenomegaly
weakened immune response



Ehrlichia
(Ehrlichiosis)
Bites from infected ticks

elevated liver enzymes
headaches
myalgias
ongoing fatigue
persistent leukopenia
thrombocytopenia


Mycoplasma <-Link


Below is a long read, albeit a good one.

http://www.ilads.org/files/burrascano_0905.pdf


Anyway, sorry for the overload of information there. I'm sure you've found most online anyway. I will, however, stress again that if there's a sign of an active infection - no matter the type, I would avoid steroids at all costs. Considering your past reactions, that's a pretty good sign something is going on.

Some insurances pay for it, some don't - but I think considering your symptoms you'd be a good candidate for a SPECT scan. I'm not familiar with all places that specialize in looking for damage specifically cause by infectious disease but I know the AMEN clinic and another one around San Diego do. I could check with some friends to get more information if need be.

It's expensive but if you haven't done it I heard the co-infection panel at Fry Lab is pretty great and the Lyme testing through IGeneX is also more accurate than most. The Fry testing is $495.00 and my insurance paid 60% back - IGenex Lyme Panel was ~$400 and my insurance also reimbursed 60%. From my personal research Fry Laboratories testing for co-infections was the best and IGenex for Lyme was the best. I got 1 positive and 3 negatives with the standard ELISA and Western Blot from 4 different labs, IGenex came back with a very straight forward positive. Fry also gives two pictures back, they look at the blood under a microscope and will send pictures of the actual parasites, it's gross but pretty cool!

Links:
http://frylaboratories.com/photos.html
http://igenex.com/

Thank you, especially ellie, for the help.

Lyme has been ruled out by everything short of spinal tap analysis. (We've run all the antibodies, and done blood culture and PCR bacterial genetic analysis.)

I'll check out those other fungal infections you have mentioned. As a (former!) neuroscience research assistant myself, it's a little embarrassing I didn't know that a couple of those fungi could get into the CNS! =D

Also, I'm scheduled for a visit in a few weeks at the Indiana University Hospital's neuro-infection clinic... and I'm on the waitlist for an appointment at the Mayo Clinic. My neurologist is a great guy who wants to see me get better, and has written good referrals for me.

Hello, you might want to follow up with another panel from igenex on the west coast. By pass the ELISA test, much literature on non-sensitivity. Draw for Western Blot IgG and IgM. Monday through Wednesday and pay extra to ship overnight. There is something about the longer samples wait to be run the less likely positive results. MDL (lab) on the east coast is very clear on this. Make sure a frozen gel pack is included with the kit.

If suffering from migraines and/or sweating or no sweat, test for Babesia species from your location.

The most often noticed clue is the mysterious multi system illness that has some parts of many different diagnosis, but not a single complete and singular disease.

It sounds overwhelming, but a doctor familiar with Lyme Disease would be able to spot the cause very quickly. There are three practitioners in Washington and many in California. Worth the flight. Generally, about four to five months for a perceived change and one year from start of full treatment, a significant improvement. No guarantees but too many have had the same experiences to ignore.

Best wishes for a good New Year.

Charlie

Hey- I had a Parkonsonian syndrome from Lyme too!!! I had progressive weakness and claw hand and bradykinesia where I moved really slow and my hadnwriting did this micrography thing and I slurred and I started going into dementia and I had chorea major and chorea in my left hand!! now I am 100% symptom free & normal and have been like that for years.

You should get treated for all the main TBDs, I had them all and they are frequently blood negative=
Babesiosis, Ehrlichiosis, Bartonella, Lyme!!!

I needed 9 months of IV Rocephin-

You CAN get better!!!
best wishes,
Sarah

This might sound like kind of a stupid question, but have you been checked for metal toxicity? My reasoning behind asking is if they can't find a bug, it might not be a bug. Not saying it couldn't be, just thinking outside the box here.

Heavy metals can cause a lot of multisystemic problems. I realize the fever doesn't necessarily fit into this (with the exception of zinc), but it might be something to look into.

That's also a good suggestion, from what I have seen and heard although it's not always noted is fevers can be quite common. I forget the exact reason but it wasn't caused by the actual 'toxin' but it's caused from your body fighting stuff and releasing other stuff then the fever comes.

I could have phrased that better I'm sure, but it should partially make sense.

many TBDs are commonly blood negative!!

Here you can see Ehrlichiosis was blood negative in 2 of 4 acute, fatal cases!

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

Evidence of E. chaffeensis via IHC, ISH, and PCR was documented in all 4 cases. Abundant immunostaining and in situ nucleic acid hybridization were observed in spleen and lymph node from all 4 patients.

Significantly, in 2 of these patients, serologic evidence of infection was absent.

UNQUOTE

Ehrlichiosis is a common lyme coinfection!!! And common by itself.

1: Arch Virol Suppl. 2005;(19):147-56.Links

Ehrlichia under our noses and no one notices.
Walker DH.
Department of Pathology, Center for Biodefense and Emerging Infectious Diseases

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum