asks for help...

[Guest guest]

I'm reposting 's request for help below (it's also in the file

section).

Hopefully a group discussion will yield some kind of solution for

and help anyone else who may be dealing with similar issues.

penny

Post by , 5/08/06

I've not posted here in months. I seem to be dying. I need to cover

a lot of ground. So I'm putting this in the files section, and will

post a note summaring it briefly.

I've had a total of 18 months continuous high dose antibiotic

therapy for seropositive Lyme and three other seropositive tick

borne diseases.

Treatment includes oral macrolides and fluoroquinolones, IM Bicllin,

and Ceftriaxone. Four months of macrolides and antimalarials. Then

two momths of levaquin followed by three months of Bicillin followed

by 7 months of Ceftriaxone followed by three more months of Bicillin.

I stopped the Bicillin last month. I am seronegative for each of the

four tick-borne infections I have been treated for, and was

worsening, not improving, on antibiotics, beginning in the second

half of last November. It was tachycardia, aggravated by the

physical presence of a properly placed PICC, which caused the

ceftraixone treatment to be terminated by order of my Lyme

specialist, who felt no good would come from continuing it anyhow,

in all likelihood.

My pulse reached 162 and stayed there for too long, and the PICC got

pulled. I still have tachycardia but not as severe or as frequent.

It is, unfortunately, getting worse.

Ceftriaxone treatment reversed cognitive slowing and eliminated

hypersensitivity to sound and light. There may be other gains down

the road, as the benefits of not having whatever pathogen was

destroyed in my body, I assume it was Lyme but can't say that with

certainty, you've had to autopsy my brain to be sure.

All other symptoms are progressing except pain, which is currently

more manageable, largely because I am too weak to move.

I have visible muscle wasting from one month to the next, pointed

out by three doctors in the same two month period, at the start of

the year. The whole constellation of symptoms which were in my legs,

weakness, neuropathy, motor and sensory nerve problems, has migrated

to my upper body. This began in the fifth month of ceftriaxone

treatment and is NOT a 'herx', IMO, but again, I can't prove it so I

don't really know that.

Anyhow, the long and the short of it is that I cannot live much

longer if the following symptoms are not stopped from progressing at

their current rate:

Muscle atrophy

Unexplained weight loss

Weakness

Fatigue

Generally low pulse, somewhat higher after two months of low dose

synthroid, but still lower than normal 80% of the time, which can

triple in less than three minutes, both in response to physical or

emotional stress and at rest, in a calm state, for no apparent

reason at all.

BP also labile but generally in the healthy range and not shooting

up to the stroke point like it was. But pulse now triples in a

matter of minutes, perhaps seconds, both under physical stress but

also at rest, for no reason.

Because skin punch biopsies of the lesions on my legs revealed a

particular type of activated T lymphocyte that is common in auto

immune diagnoses but not in infectious disease (according to two

doctors, the dermatologist who did the skin punch biopsy and the

oncologist who is trying to save my life.

My pain level is manageable primarily because I am usually too weak

to move or do anything so there is no exertional stress on the body

except the stresses that lack of activity itself imposes. At no

point did it improve on ceftriaxone, but it's kind of a revelation

that nearrly no movement, over a period of several days, actually

brings the pain down as much as it does.

Guys, they're gonna want to consider some immunosuppression, so I

want to be damn sure this isn't the work of pathogens. I'm satisfied

for now that it's not the tick-borne infections, though whatever it

is probably was enabled by them or the treatments I received for

them.

Tony, can you give me a list of things you think I should get tested

for? Specify what samples are needed, what the pathogen is, and what

the lab has to do. I will pull out the stops to make it happen, and

now is the right time, while my seeming to be dying has the doctors

in a cooperative mood.

Jaep, ditto on fungal pathogens, I need you to give me the most

complete descriptions of which tests to get done as you can.

Everyone invited to chime in if they have thoughts.

Right now, the only things I'm positive for that we know of are

symptomatic HPV, Early Antigen positive EBV but Capsid negative, and

we just learned a strong positive for HHV-8, which unfortunately

only occurs in 5% of controls and the rest are mostly cancer

patients and people with severe chronic illness.

My labs are remarkably consistent. White counts always elevated,

neutrophils and lymphocytes always elevated. Doctors think auto-

immune, but I can't be sure of that. Wish there were better

antiviral options. Wonder what people think about acyclovir.

On the possibility this is auto-immune disease triggered by chronic

infection, I would take IVIG but am resistant to steroids, unless

dosages are very, very low and antiviral drugs are given

simultaenously. My chest x-rays are consistently clear so no one is

thinking Sarcoidosis. I just had a CT scan a week ago, don't know

the results but am sure I'd have been called if there was something

obvious.

I have high genetic risk factors for both cancer and mitochondrial

disease. I was also born when my mother was nearly forty, which

means that I was exposed to a different set of hormones, and

inherited an older set of genes, which changes probabilities for

many conditions but in particular makes mitocondrial disease more

likely.

I have a niece who is dying of a mitochondrial disease right now, at

the age of 28. She's blind, incapable of speech, unable to control

her movements, losing basic reflexes that life requires, on a

feeding tube for over a decade, but is in the last stage and

expected to die in the next few months.

At the moment, the only pathogenic organisms we know I'm positive

for are the viruses I mentioned, all risk factors for cancer and

suspected of playing a role in triggering both mitochondrial and

immune-mediated diseases that roughly fit my current symptom profile.

A CT scan was just done, a muscle biopsy to try and confirm

mitochondrial disease or rule it out is in the works, and I think

they should check that biopsy for pathogens too - welcome

suggestions there as to what to look for.

Because of the muscle biopsy, I have taken no supplements for the

last 45 days except B shots because they can corrupt the results and

we're only gonna get one chance. Many MITO patients have to have

repeat biopsies, I can't sustain that kind of stress and don't

appear to have that much time.

Three doctors, all of whom know my case well, have said they feel

MITO is most likely even though statistically cancer is more common,

because of my specific symptoms. No one, not my Lyme specialist and

not anyone else, is looking for pathogens.

So I need your help, gang, I need you Brainiacs to think about what

other lines of investigation than those under way might be wise.

Nothing anyone says will offend me.

Thank you.