Absolutely NOTHING is positive?

[WillowJ]

How did the cardio help? Did a tilt table and echo, all good, but my hr was 120 the whole time. Been upping salt alot and elevated my bed a couple inches which I think is helping, but laying down leaves me feeling weak and heavy.

without doing a TTT, my cardio didn't like my tachycardia and tendency to have lowish BP, and I ended up on florinef, which improved my weight. Electrolytes, too, but that wasn't enough alone. I clearly have a dysautonomia, though, which is visible in the color changes in my hands, feet, arms, and legs, if standing or I let them dangle or whatever non-ideal position.

what I really wanted to say was, hang in there. And keep telling your docs you need more help, until you find the right solution for you.

 

[Rlman]

Thanks for the responses guys!
Ok, so I only did the low dose Lexapro for a month, started having trouble with my legs becoming sluggish and didn't feel better so I got off it and the leg thing cleared, but it seemed like I was a little worse afterwards and felt like I was passing out walking around (BP would be around 100/60 +- 10). The 33 felt pretty bad, but I was also laying down. It seems to go to 90/40 laying down, been trying to up salt intake. Saw a cardio for it, echo and something else was clear and the tilt table was clear as I didn't faint or drop BP, but had a HR of 120 most of the time.

CBC, TSH T3 T4 and antibodies, ACTH 2x, ANA, EBV, CMV, Urinanalysis, GTT (Which I should've failed, but the doctor ignored a low between data points...), Parasite, Western Blt Lyme (No pain anyways, yet), IGE Test, POC Chem, CT scan, MRI, Xray, Hep panel, Celiac, Lymph Node biopsied (Was enlarged, but benig and not swolen), HIV, Ferritin was 73, CK, and then some naturalpath tests. All of these were negative except the EBV which....

The EBV showed Ab-VCA and Ab-IgG were above 8 (High), but tested again later and were about gone. I don't remember having mono at any point, no fever, aches would have been a day or two at most, no lymph nodes, and no sore throat.

My ACTH's were confusing; The first went 17 base to 23 with acth of 8, the second a year later, during a crash, went from 4.8, to 16, to 25 with an ACTH of 10, but there was a base of 8 cortisol done the next day. The head scans didn't report tumors, but maybe they didn't look?

And lastly, I'm stuck in Alaska, I'm home with parents, but there's no way I can fly, when I crash my body shuts off and I can barely move, so I'm stuck in Alaska, last year I flew to seattle semi ok for Virginia Mason (Total flop). I did a trip to Anchorage, and have a NP helping me now, but without a direction I'm stuck.

*Edit, possibly relevant. When I was 12 I failed the tuberculosis PPD skin test and had a granuloma in my lung. Did INH for 9 months and had some weird problems after that, but nothing like the last couple years, not even close.

Hi Automobile, I also have a slightly enlarged lymph node for over 3 years on my right upper chest (near armpit) but unlike the case for most people with CFS, it is not painful or tender. Was your lymph node ever painful or tender? From what I understand yours was not but just want to confirm. Was your biopsy a removal of the whole lymph node through surgery or just a needle biopsy ? Thanks and I hope you feel better soon!

 

[Automobilie]

Mine wasn't painful either. The diagnosis was nonspecific reactive follicular hyperplasia. Nothing came of it though. Whole node.

 

[Rlman]

Hi all, I've been lurking here for quite a while and finally made a profile. I'm a 22 year old college student (Was I guess) and came down with something the start of 2013. The first year, I'd get crashes that were extreme nausea, weakness, and would lose my appetite. Only had about four major crashes and some minor ones that just required laying down for a couple hours, fatigue really didn't seem to be a main problem then, mostly nausea during crashes and I'd feel depleted, but could do stuff and be out late without crashing.

Next year has been a lot harder and I've gradually gotten more and more home bound and can't leave the house anymore. Viral symptoms weren't much of an issue aside from a flu-achy feeling for a few days at a time, and the light headed pass out feeling seem to have started after taking Lexapro for a month. Laying down I've had BP as low as 85/33, but could stand up and it'd be 100/60.

Anyways, what I want to ask about from reading other people's reports is is it common for nothing at all to be positive? Most people seem to have measurable deficiencies, positive virus titers and other things. All I've had was some exposure to EBV (which went down and no viral symptoms), low vitamin D which came up quickly, low blood sugar which has been stable this year and not correspondant with crashes, and a couple other very minor things. I know CFS means "There's nothing wrong, but you're also perfectly unhealthy", but it always seems there's things that show up? I don't know what to correct and if I don't get busy soon I'll be lucky to not be bed bound next summer.

Maybe take a look at Stop the thyroid madness website. It may be worth a try taking hydrocortisone or florinef for cortisl and aldosterone. Their adrenal group on Facebook is really helpful. Diagnosing adrenal and thyroid issues is complex.

 

[Rlman]

Just hit another crash. I usually suddenly become VERY weak, diarrhea, become nauseous, and my appetite tanks. Flu hasn't been a thing much, but I've been crashing easier and easier. BS and BP are ok right now too...

these are classic symptoms of adrenal crisis, though I guess could be caused by other things as well

 

[Automobilie]

Well, I used to perk up after awhile. This time its been a month and a half of getting worse and can't walk around much. Plus my stomach has started hurting badly for the past couple weeks.

 

[physicsstudent13]

Thanks for the responses guys!
Ok, so I only did the low dose Lexapro for a month, started having trouble with my legs becoming sluggish and didn't feel better so I got off it and the leg thing cleared, but it seemed like I was a little worse afterwards and felt like I was passing out walking around (BP would be around 100/60 +- 10). The 33 felt pretty bad, but I was also laying down. It seems to go to 90/40 laying down, been trying to up salt intake. Saw a cardio for it, echo and something else was clear and the tilt table was clear as I didn't faint or drop BP, but had a HR of 120 most of the time.

CBC, TSH T3 T4 and antibodies, ACTH 2x, ANA, EBV, CMV, Urinanalysis, GTT (Which I should've failed, but the doctor ignored a low between data points...), Parasite, Western Blt Lyme (No pain anyways, yet), IGE Test, POC Chem, CT scan, MRI, Xray, Hep panel, Celiac, Lymph Node biopsied (Was enlarged, but benig and not swolen), HIV, Ferritin was 73, CK, and then some naturalpath tests. All of these were negative except the EBV which....

The EBV showed Ab-VCA and Ab-IgG were above 8 (High), but tested again later and were about gone. I don't remember having mono at any point, no fever, aches would have been a day or two at most, no lymph nodes, and no sore throat.

My ACTH's were confusing; The first went 17 base to 23 with acth of 8, the second a year later, during a crash, went from 4.8, to 16, to 25 with an ACTH of 10, but there was a base of 8 cortisol done the next day. The head scans didn't report tumors, but maybe they didn't look?

And lastly, I'm stuck in Alaska, I'm home with parents, but there's no way I can fly, when I crash my body shuts off and I can barely move, so I'm stuck in Alaska, last year I flew to seattle semi ok for Virginia Mason (Total flop). I did a trip to Anchorage, and have a NP helping me now, but without a direction I'm stuck.

*Edit, possibly relevant. When I was 12 I failed the tuberculosis PPD skin test and had a granuloma in my lung. Did INH for 9 months and had some weird problems after that, but nothing like the last couple years, not even close.

Wow I was just diagnosed with a calcified 2mm granuloma on xray in my right lung lobe. I can't exhale and have terrible brain fog- my mother had TB. but there are also many other causes of granulomas including many infective agents.
http://en.wikipedia.org/wiki/Granuloma#Histoplasmosis

Is this an emergency? my father died from lung cancer
For years I was waking up with bad lung congestion sometimes hyperventilating. This time the ER only gave me azithromycin. I went on rocephin for 10 days and it seemed to help (need gallbladder mediction with it)
I have terrible brain fog that I thought was from only sleep apnea but could be also from infection, diabetes/gluten, poor blood flow. I take piracetam at 2400mg and need to consider HBOT asap.

 

[Automobilie]

If you're having lung problems there's a test. I wasn't active then so it was just nine months of amoxicylin (inh). Recent xrays haven't showed any.

 

[Jonathan Edwards]

A calcified focus will have been there for months or years unchanged. At 2mm it will not be causing any symptoms or interfering with lung function. It is of no significance to current symptoms.

 

[physicsstudent13]

Thanks very much!!!!! This calcified focus is a sign of infection certainly and possibly tuberculosis from casual contact with my mother? I could have Bartonella and Lyme's with my neurological symptoms? I cannot exhale, the CT scan shows I have asthma

maybe there is some truth to the bacterial hypothesis of David Hahn and antibiotic treatment is useful for people like me whose brains have been terribly and permanently damaged by lung disease. I did many treatments to treat my neuro inflammation and stroke symptoms including asv and oxygen every day and piracetam but nothing worked to save my precious neurons and brain from damage
I think I should have done the TB antibiotics a long time ago, unless they really cause asthma or make it worse? Now at this point the infective attackers are shielded by calcium and some Biofilm that will require 4th generation antibiotic injections?

http://www.deancare.com/Foundation/research/asthma-research/

 

[physicsstudent13]

if my TB skin test is negative I could have aspergillomus or another infection requiring antibiotics plus a steroid?

 

[A zombie]

you need to get for lyme via igenex, if you are using lab corp or quest, they have a 50% accuracy

 

[A zombie]

test hh6 too