Topic: Polysomnogram Result - A Book Where No Pages Fit. :(
seekhelp
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posted
Every day that goes by I feel like more and more of a fool. I saw a sleep medicine doctor that has done three separate polysomnograms in 2-3 months (regular test, titration test, and then after saying my fatigue/sleepiness is still terrible w/CPAP treatment, a polysomnogram with MSLT portion).
It's crazy. I have pretty severe sleep apnea when NOT using a BiPAP/CPAP (30 awakenings / hr). I use it religiously and have since early 2008. Because I was getting no relief from fatigue, I tried seeing this new sleep doctor praying he could offer help. I was wondering if my machine was defective or something.
Well, I go in this week to discuss the results of the MSLT portion - looks for narcolepsy type conditions and other stuff. I'm whining how I feel worse than ever after following 2 months of the new CPAP protocol pressure on my machine.
He looks at my recent results and states I'm doing incredibly GOOD on the pressure..less than 3 awakenings/hr. No narcolepsy shown. In the meantime, I'm yawning every minute in the office, eyes watering like crazy, legs like lead. What the hell?
He asks me how my 'mood' has been lately. We wants me to try Wellbutrin. He said it helps 50% of his patients. I asked him how do you know my history when you've never looked through my medical file (6+ inches thick) for other causes. He said he doesn't and he's a specialist. He said he wouldn't have time to do so.
He's from India and did state it's very unlikely any worm infection, if I even have one, would cause my issues (fatigue and more).
I admit I really feel like a raving idiot when results like this show up. I tell people I have a bacterial infection. CBC and CMP labs and urinalysis always perfectly normal. I tell people I have Babesia. RBC count normal, hemoglobin perfect, iron / ferritin perfect.
I tell people I have possible tapeworm.....stool ova and parasite test negative at least 5 times over the years.
I tell people I'm tired constantly - get 8+ hours of sleep daily and a perfect sleep study.
I tell people my coughing is bad and can't breathe - chest x-ray perfectly clear along with MRIs/CT-scans. All pulmonary studies normal.
At what point do you step back and say, "maybe I'm nuts and the regular docs are correct?" Maybe I'm psychologically off?
Yes, I have this blood smear now that Clongen 'claims' has endless round organisms inside white blood cells. I've told three docs and they had no concerns at all. I'm sure my ID doc will agree it's artifact and this lab finds all kinds of stuff that doesn't exist for real (like Igenex supposedly). Basically, the theory will be you 'pay' for a positive test and no commercial lab would ever replicate the findings.
Makes you wonder, huh? Maybe I'm headed for the looney bin.
Who is the fool? I've treated tick-borne diseases in some fashion for 2.5 YEARS and barely better than when I started. Still can't drive any distances, can't walk stores myself most days, can't take my child out anywhere myself. So when they ask, 'did Abx help?', did they? Am I suckered into the Lyme world by LLMDs diagnosing everyone or by labs finding Lyme? At some point if nothing works for you that is supposed to, you gotta step back.
What do you need to do to get help from a conventional doctor? DIE? What is wrong with them? Seriously"?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I have days like that where I wonder if all those regular doctors are right, too. After all, we've been seeing LLMD's for years without much progress.
Then, I re-read "Cure Unknown" again and am convinced all over again that the regular doctors are wrong enough about the whole Lyme thing that I can't trust them.
Whatever the ultimate answer about Lyme, I think the regular doctors just treat symptoms. I think it is a good idea to go to them for whatever symptom relief you can get.
It is only when we weren't getting any answers or symptom relief from them that my family ended up here, in the Lyme world.
I have several examples in my family where someone has been told that their problem was caused by stress or anxiety and it has gone away by other (alternative health) measures so I am naturally skeptical when they say that now. But I am not opposed to taking psych meds if they help.
My daughter's headache was helped for a few years by Elavil. Maybe Wellbutrin would help you, even if your problems aren't entirely psychiatric.
Posts: 984 | From US | Registered: Dec 2007
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djf2005
Frequent Contributor (1K+ posts)
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Dude you gotta try to be more positive.
I know it's hard but the constant negativity is making things worse.
You WILL get better. Believe it.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Hoosiers51
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posted
I'm surprised he didn't offer you Provigil or Nuvigil. Have you tried either of those? Of course they just treat the "symptoms"....but still.
From reading on sleep forums (like www.cpaptalk.com), I feel like most sleep specialists go to Provigil when the apnea/hypoapnea index (AHI) is low and the patient is still drowsy or sleepy or tired.
Looks like he wants to rule out depression first. Might as well go to the psychiatrist, try the Wellbutrin, and if that doesn't work, maybe they will start recommending stimulants like Provigil.
I have tried all those things, so I am not against going that route. I think you should stop asking yourself "if" LLMD's are crazy, because that is wasted energy, and start taking other doctors seriously as well. Maybe BOTH know what they are doing? It seems like that's a scenario you haven't considered. So why spend all your time obsessing over who may be wrong, when it's possible neither are?
All that to say, I would just try the Wellbutrin, if that doesn't work, try Provigil. Posts: 4590 | From Midwest | Registered: Jun 2008
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djf2005
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Ditto on provigil.
It worked wonders for me for a year.
Now it makes me tired, but it should help you initially at least.
Adderol is good too, but more addictive.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
I have a CPAP in my closet. My sleep apnea went away after lyme treatment (though it's still in my medical file). Can't get another sleep study done if I don't have fatigue. I too have been prescribed all sorts of anti-depression meds. Prozac gave me headaches and did nothing. Wellbutrin made my mouth dry. Zoloft got me through my father dying. It wasn't until I started Babs treatment and did 30 days of Humaworm aid I start to get my life back. This is after 3-1/2 months of Doxy.
Keep going, you're not crazy. BTW, Provigil gave me the worst headaches EVER and I've had headaches my whole life.
It can't hurt to treat a symptom. That's why I take Advil. Maybe you need something short term to help you sort through this.
I know this is tough and this sucks. There should just be SOMEBODY we could just go to and they would take care of us. But, unfortunately we're on our own.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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seekhelp
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Hoosiers51, I guess what you said makes sense. You can probably tell I'm a black and white person. Right or wrong. Infected or not? I have a tough time with middle ground and moreso with being wrong or being called a liar by conventional docs. I want to say here's my proof, but the reality is my tests don't back it up. I feel like a fool because of it.
Yeah Derek my attitude needs adjusting. I just get grief at home from my spouse for not being well at times. Docs tell you you're crazy basically. All of it piles up.
I don't know why I have such terrible fear of anti-depressants. I need to stop being like that. I read posters like Cass A constantly stating they are the root of all evil,etc. I've always been scared of them, but my wife says why if I'm willing to take these crazy anti-malarial drugs and other wacko stuff some LLMD thinks I have. She says she would take anything to try to get her life back if in my shoes. Maybe she's right?
I'm starting to wonder if/how someone can be ill with textbook perfect labs 99.99% of the time. It goes well beyond reason. I read so many here chasing ghosts and never improving or relapsing endlessly. I respect everyone's attempt to regain their health. I think I've lost faith in almost all doctors. If one won't read my entire medical file page by page, I sincerely believe they aren't in any position to assess anything.
Oh the reason I didn't get a stimulant is because I had a scary reaction 12 years ago to Cylert. I never tolerated any of them well (Buspar, Provigil, Cylert). Cylert kept me up 68+ hours. I collapsed of exhaustion and wound up in the ER for a few days. My body does not like this drug class. I'm not sure if new meds exist now with less severe side effects?
Honestly, yeah my mood is down. Who wouldn't be after basically being a prisoner in your own home for 3+ years? I want my life back so much.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
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Wow, according to this site Wellbutrin helps nearly everyone. THey all say it's great and want to be on it for life. Maybe I should be taking it.
IckyTicky
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posted
I don't know all the answers but I do feel your frustration. If it helps at all.... I am CDC + and alllll those tests come back completely normal for me as well! Never fails! I'm completely healthy and need to check myself into a psych ward!
I can tell you for sure that IgeneX does NOT give out false positives. I'm CDC +, my Oldest and youngest children are CDC and IgeneX +.... but my middle daughter only came up with two bands I think on IgeneX. IgeneX called it negative. My husband came back with only 1 band present with Igenex.
But then... low and behold a regular lab found bands that IgeneX didn't. IgeneX isn't perfect, but they aren't liars. And you aren't crazy.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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seekhelp
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Thanks Ickyticky for the insight. I hope I don't become the neighbor at the ward soon. This disease is one of the most hellish out there.
I wish someone would volunteer to be biopsied limb to limb to PROVE Bb exists in the tissues. Nothing is that evasive. Why can't we get help? How can it be this stealth? Someone needs to take one for the team. lol. If Babesia hides in the muscle tissue, biopsy it. If it's in the lungs, biopsy it. For goodness sake, medicine calls us liars all the time. How could they dispute THAT if positive?
Just looking at blood seems to be the stupidest thing in the world if this bacteria has an affinity towards muscle, bone, etc. I think that's why I have such a hard time buying into it all at times.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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momlyme
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Watch "Under the Eightball" -Lori Hall-Steele the woman who died in the making of this documentary was misdiagnosed with ALS.
They did an autopsy after she died and she had Lyme Disease all along.
I believe they took tissue samples, I don't know about bone... you could contact her brother through their facebook page.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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djf2005
Frequent Contributor (1K+ posts)
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welbutrin is a mild drug and does help a lot of people. my mom and i both have taken it numerous times and it always helps.
once during my illness when i was still disabled i was suicidial and it got me thru that, i know how it is seek.
Keep hanging in there.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
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