I made a list and it is....long!

leg pain,cramps
extreme stabbing pain
foot cramps          
conjunctivitis
knee pain, locked
tinetus
anxiety
runny nose/stuffy/phlem
temp never normal. 1x in months.
temp 94.5, 95.6  97.0 97.2 96.8  changes in minutes during my sudden pain attacks
migraines / 10 years ago one with facial numbness and impaired speech , numb arm
legs gave out  without feeling faint , just like rubber down i went          
back, neck, pain
shoulder pain deep in joint
jaw pain
foot /ankle pain
arm pain/elbow pain  / locked elbows upon waking    2x    
wrist pain      stabbing                          
sleep paralysis     3 x            
pain attacks  /  electric feeling effervescence? pac men?  whole body                                                                        
memory
vivid dreams  really long stories i remember!
can't get warm.
hands and feet cold
knees hot
blurry vision went to eye dr. tried various contact lenses
extreme stabbing pain  shin arms wrists ankles
tic bite (s) life long
mood swings /anger flares (when on Atripla for hiv fall  2010/ spring 2011  better now am on other meds)
writing dyslectic
saying the wrong word
depression over money and now health but....
wonderful family / i am usually happy hippy loving energetic person

recent more of olfactory hallucinations burning smells..gas
floaters,seeing things dart from the corner of my eyes
heart? pain left side chest under breast pumps hard on little exertion
more tinitus louder low hums and high pitched at same time! ugh!

Exposures

house mold, water test had coliform, ( shock treatment)
cat, cat scratches life long, horses, dogs , fleas, ticks,  lots of mice, spiders, black flies, horse flies
I cleaned lots of mice droppings and pee, multiple times in the past 4 years (renovating)
Cleaned moldy things. Multiple times.  
Renovations.
Asbestos exposure.?
Lead exposure.?
swam in lakes and ponds and rivers and  oceans all my life
gardener, fish, hike,

hey ya gotta live. and do what needs to be done.(cleaning yucky stuff)  and i am an out doors person! wore repellant and long sleeves and pants (i am no dummy)

now to get better and get back at it.!! all of us!

[mojogal]

In my non medical opinion, it sounds like Lyme with the co-infection of bartonella. I can sympathize!

[Ricobord]

You definitely sound like Lyme. I don't think there is anything else out there that causes all that.  I made a similar list and it's got about 80 detailed symptoms on it, and that is without joint or muscle pain!

Sounds like you have done your research!  Looks like you also need testing for mold, heavy metals, toxoplasmosis, and Bartonella.

I recently watched an hour presentation by a Swiss doctor who has written a book called "The Swiss Guide to Optimal Health." (Link was posted on this forum recently.) While I do not agree with him in being anti-antibiotics, everything else he said made sense. He believes that the people who get really sick with Lyme (Borreliosis stage 3), do so because their immune systems are compromised because of toxins, poor diet, and virus loads.  In prInciple, I believe what he says, but I also believe we need pharmaceutical help to kick this bug completely, not just to help the immune system manage it.  I also believe that some people get infected with Borrelia, and then their systems become weakened and no longer able to clear the usual toxins and to control pre-existing viruses.

Have you seen Shoemaker's info on mold?  www.survivingmold.com

[gibsongal]

my igenx Bart was neg. IDK
i have looked into mold some.. will follow up with that..
there is a test for it i think.

when i was off my HIV meds last summer my viral load went up a lot from being undetectable for 10 years. and my cd4 went down from being really good (high 600's ) for 10 years.

then my symptoms started..
so i think my immune system was holding whatever is wrong with me   off for a long time.

after 4-5 months of new hiv meds my symptoms have been better
( had daily constant pain . with the surging pain attacks .now it is more manageable. attacks once a week or 2)

but i am not cured at all.  legs and ankles hurt a lot yesterday..

still kind of afraid of what the ID doc is going to say on Monday.
he is taking me off one of the hiv drugs, tenofovir because it can cause pain.. i asked him about this 6 months ago and he said doubtful.. now he changed his mind.

the tenofovir was in my combo pills. Truvada, Atripla and current  Complera. so i have been on the Tenofovir part of the combos for 6 years?

i hope it is not Lyme really because if it is late stage all the ABX to do ... but i can't imagine  that the Tenofovir causing ALL these symptoms.

my hiv has been very manageable and felt so normal and look great before all this started last summer.

I take care of myself, never get sick, eat good food ( when i am hungry) no junk, no restaurants..

so  i hope he is not going to dismis the few + and ++ bands i got on IGENX or the list of symptoms i am printing out.

sometimes it you hand them a paper , instead of verbally speaking, they can see it clearer...

they have a lot on their minds and maybe they don't "hear" you when you talk.

i probably have some of the Lyme bugs due to my outdoor  life style  and my living in VT..

i sure do not want to let that go and find out in 5 years that i need IV treatment.

it is such a shame that it can go on that long and people get worse and worse when it could have been caught early.

the thing that gets me is that they look at the tests and do not put the clinical symptoms in the mix.
my ID doc is thinking it is my hiv or my hep c and not thinking of other pathogens.

wonder how long it will be to get the neuro work up scheduled.

i swear when i had my last attack on Sept 12 i wanted to go to the hospital. last time i went to the local ER they dismised me and thought i was drug seeking, didn't believe my pain.

i also went to a local clinic last fall in excruciating pain when my MD (the one i later fired)  was on vacation,  they take emergency people.

when i told them i was hiv + they sent me away with a list of MD's that may or may not be taking new patients... without asking my name. they said "no Dr. can see you"

i have a complaint in with the Justice dept aids discrimination division and no outcome with that yet..
they can't do that to people...i still lay awake at night from that trama.. it is hard enough to have hiv and tell a stranger/receptionist
but t be shunned..

it's 2012..! i am not an addict, but they assume i am. i got this when i was young...1986!  because i was promiscuous.
thanks for the support and listening.

[mojogal]

That is terrible. I am so sorry you had to experience that.

[Ricobord]

That is terrible! Definitely follow through on that complaint. I am amazed that a medical facility would do that to someone in pain who comes in for emergency care!  I thought that was illegal.

[gibsongal]

it is illegal..thus the JDept and i am calling some attorneys.

my story .. perhaps i will write a book!

i also had anID doc the one i fired after 4 visits..because she sad
"if you just put the pill in your mouth!'

she wanted me to take topomax (topamax) and amyltriptline (El evil) with out a diagnosis as to what was causing me pain. she refused pain meds.

the nurse told  me that in 8 years of working for her doc never gives out pain meds. was she playcating me or covering up for the doc that thinks i am drug seeking?


now what kind of ID doc that takes care of hiv hep c lyme the flu? and what ever else never gives pain meds.??

what is wrong with these people.

i am not an addict and don't want to be on any drugs! but my pain is real!

i contemplated shooting /crushing/ cutting one of my toes off so i would get pain meds! i was sooooo bad..

[JackieCalifornia]

The other possible meaning of what the nurse said to you (that the doc never gives out pain meds) could have been a way of quietly letting you know to consider Finding Another Doc.  

There are some docs who don't give out any pain meds stronger than Tylenol, esp since the govt cracked down on those who prescribe narcotics (like codeine) on the theory that we are all a bunch of drug-seeking junkies.  So if that doc is one of those who won't prescribe major pain meds to avoid hassling with the authorities, then the nurse may have waving you off not to waste your time while you suffer and to go find a doc with a prescription pad that actually sees some use.  Dunno, but it's a possibility.

[gibsongal]

true jackie... it is hard to "read" people sometimes when one is in a state of illness and pain.

the nurse  was really nice to me and i could see the sadness in her eyes.

[nutrinut_bob]

A lot of your symptoms can also be ascribed to toxoplasma.  Many people, for example in the Philippines the infection rate of folks in the country is over 60%, unknowingly carry it.  Don't worry about lead exposure, the elemental form is poorly absorbed, it's the organic form like they used to use in gasoline and paint that'll get you.  I handle lead on a daily basis.

We're really just beginning to understand what these little vermin can do.  Research it yourself, toxoplasma gondi.

[gibsongal]

i have antibodies to toxo.. i asked him about this.....my doc wasn't concerned.. :)    ;(

lgrew up and lived on a farm, in NJ 10 cats,( lots of scratches!)  dogs, puppies, horses..bit by ticks in the 1960's and 70's  all the time..

been in VT for over 20 years..country girl...fish hike garden in the woods all the time..

could be another bug that reared it's head.. as there are so many that can effect an immune compromised person..

i will bring it up again on the next visit but he is the type that does not like people to do too much worring and wondering about all the things you read on the net.

thanks!

[Ricobord]

I have seen articles on toxoplasmosis, also.  They say the same thing that articles about Bartonella say, that a lot of people have them, but a healthy immune system either fights it off or keeps it in check. The assumption on the part of most mainstream docs is that if you have some antibodies, it just means you were exposed in the past, not that you're sick because of it. I think doctors are only worried about toxoplasmosis in pregnant women.

They look for some cutoff of antibody levels that defines "positive" vs. "negative."  (There is an argument that some of these antibody cut off levels are too high and people who need treatment don't get it. IGeneX indicates an 'equivocal' or 'not negative' result, which other labs would probably call a negative.)

But then doctors don't know to consider these "silent" diseases when suspicious symptoms set in, or when the immune system gets compromised (HIV, Lyme, high stress, et.al.). I would think that with your HIV, your ID doc would be more concerned about treating you for other infections.

I think it is hard to know if a case of Bart came along with Lyme in the same tick, or whether it was already hiding out in the body when Lyme arrived. I got bit in the neck by a huge, disgusting deer fly in the Midwest and got a painful red bump that lasted several days. I would not be surprised at all if I was already carrying around a low grade case of Bart when I got Lyme years later. I will never know. I only know both were making me sick recently.

If any doctor who wants to argue the official position that Bart isn't transmitted by ticks, I would just say I could easily have had it already when Lyme arrived. That could easily be true for you, too, given your outdoorsy lifestyle.  Was your Bart test at IGeneX or LabCorp (sorry if you already said.)? Did you get tested for both b.henselae and b.quintana?