sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thanks for the update seek, I've been thinking of you and praying for you
Sounds like you finally found a good doctor to help guide you through and help with the testing.
Posts: 5237 | From here | Registered: Nov 2007
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Great news seek.
I never thought you were faking, not in a million years. I hope you get through this and wind up a better person. I also hope this gives you the strength and wisdom to resolve your daughter's issues.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Please let us all know how things go. We are all rooting for you! Hope you get some answers...
Posts: 2387 | From New England | Registered: Aug 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- seek,
Glad to hear you found a good neuro-opthamologist.
Be sure to take care of yourself around this. Knowing, in advance, what to do should help. I'd also get some good organic veggie juices ready for you to enjoy afterward. Pick your favorite music, etc.
I hope all goes well. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Good luck. I hope this is the answer for you and will put you on the road to recovery.
Posts: 581 | From CT | Registered: May 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Let us know what happens.
TAke someone with you who can advocate for you, so if they try to make you get up from lying down too soon, they can step in and make sure that doesn't happen. (I did this myself, but my husband was there, too, after a while).
Posts: 3792 | From around | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Well spinal tap is done with. I had it done last Friday. It was not a fun procedure at all. However, I just wanted to let people know that I didn't feel it's as 'barbaric' as many here stated. I guess I've had some other crappy things like arthroscopic shoulder surgery, muscle biopsies, etc. so... I was at the hospital 4-5 hrs post procedure to lie completely flat.
Would I go through it again? HELL NO. I did not expect a needle would be in my back for 45-60 minutes draining the fluid. I thought this was a 5-10 min procedure at most. It was done under Interventional Radiology.
I did unfortunately have a moderate spinal headache the day after, but it seems to have went away. My head felt funny for a while, but truth told it always does.
The hardest part is the pain in my legs/butt area when walking. It seems to be getting better, but it is concerning. It's hard to fully bend over without pressure in the buttocks/hips. Every day it seems to be getting less severe, but we'll see. I'm only 3 days post-procedure.
Bottom line - NO PSEUDOTUMOR CEREBRI - waste of time. My opening pressure was 22mm HG.
Not all tests are in yet, but most is completely normal. Same crap as always. However, I do have mildly elevated CSF lymph levels and low CSF Albumin levels. I'm not sure the meaning. Bacterial and fungal cultures are not complete yet, but preliminaries are negative.
I'm awaiting a Lyme test on the CSF and one other one.
My whole situation just damn sucks. My tests just show I'm too healthy to be sick. I'm lost. As I've said repeatedly, it's illogical. Massive head pressure, fatigue, eye pressure/swelling of optic nerve, eye watering, heavy legs, stiff neck, off-balance, tight back, occasional chills, etc - but healthy as a horse on paper. The ironic thing is I'm NOT a healthy person..hmmm...
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
But, seek, ALL those symptoms are symptoms of Tick-Borne Illnesses!!! ANd surely you know that. None of them have to be caused by Psuedo-Tumor Cerebri, etc. It's good to rule the Psuedo-Tumor out, etc., but . . . I also wonder if things like the increased cranial hypertension (Psuedo-Tumor Cerebri) can't come and go in people who don't have it as severely as some.
I don't know your whole story re treatment, but it sounds like something---or many things (various infections and all the other culprits) hasn't been adequately addressed. NOt that it's easy to know what needs addressing and how. But that sound like the direction that's needed.
When I'm off treatment, my migraines can be daily for more than 5 months at a time (as they are now!) With treatment, they, and many other sx go down drastically after a while.
Posts: 3792 | From around | Registered: Mar 2008
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Seek, I just had the spinal and all that showed was a few white blood cells. I know what I have, it just sux that you have to go hrough this. Everyone stuck on this board does. Non conclusive , spect scans, MRI all inconclusive which means waste of time money...why do them. I know my mindand body and so do u. Sometimes I doubt it, but my husband reminds me, I've gotten better before. My heavy legs that I felt almost paralyzed in 1988 were not Epstein Barr. The bells palsy in 2002 was not a migraine. These thing were real and caused by Lyme, cos. virus... you're not a healthy person. If you have those symptoms, which you do, you're not...
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I know what both of you are saying. I guess when your vision starts to get impacted, you start to think fast. I felt I had to rule out PTC given the findings/circumstances as there is a treatment for it.
Lyme in Putnam, if you got better before, then you have your answer IMO. I never feel I got better. I never got any quality of life back at least to the degree I wanted. The head pressure has been relentless over the years. I guess I was desperately looking for an answer. We all want them.
Yes, I'm not healthy. That's a sure bet.
Rumigirl, I'm glad to hear life is more tolerable when in treatment.
Does anyone have thoughts about the increased lymph % in my CSF?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
They are saying 22 is not a high opening pressure? I know people diagnosed with pseudo tumor with that pressure!
Normal is supposedly 10-15.
Have you tried diamox to see if you feel different?
Posts: 581 | From CT | Registered: May 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Increased lymph is simply a sign that your body is fighting an infection. My lymph is always elevated on every blood draw.....
Providing that this is related to lymphocytes?
At least you've knocked off another test, sealed another door. Your mind is free to move on. Indecision alone, can make us sick (stress).
I'll say it again, reading your symptoms are like reading my own. And while I've treated a bit more aggressively than you have, still not near baseline- before I began treatment.
Couple options: Test your urine for mycotoxins. Test for FL1953. Treat babesia aggressively, for 5 or more months. Duncani is a bugger. You may get some relief from treating that, but it is NOT the whole problem.
Ohhh, and look what Opus ^ has said about the opening pressure....hmmmm. Isn't the head pressure supposed to let up for a bit after a tap?
Thinking of you-
Posts: 3975 | From usa | Registered: Aug 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
opus, whoa!!! I had a spinal tap 1 1/2 years ago in the ER, when I seemed to have aseptic meningitis from IVIG. I asked the dr to check the opening pressure, due to suspected PTC. My number was never recorded, but it was about that #, I think---definitely way over 10-15. So I thought that PTC was ruled out, even though I have all the sx!! Plus, it was never recorded! Argggh!
Plus, I clearly DID have meningitis, even though I didn't have the CSF markers that said that I did to the drs. I had a migraine that was beyond the beyond, and beyond pain meds for days, plus couldn't bend my neck even 1 degree!! Was in the same pain when I left the ER, but of no concern to them.
Don't give up seek. We can't, no matter how much the drs give up.
Posts: 3792 | From around | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I hgave not spoken to my neuro yet about the results, but his associate mentioned 22 is not elevated during a phone call. I called the office when I was having my spinal headache episode. I read online when obese, the opening pressure can be +5 higher as the norm. Not sure if it's true.
The closing pressure after draining CSF was reported to be approximately 17. I can say I felt ZERO relief in head pressure from it. I did not take Diamox as my neuro-opthamologist told me not to before the procedure. He didn't want flawed results.
I obviously need some clear answers, but I would guess it's safe to say my level most likely wouldn't cause this much agony in symptoms, would it.
quote:Originally posted by opus2828: They are saying 22 is not a high opening pressure? I know people diagnosed with pseudo tumor with that pressure!
Normal is supposedly 10-15.
Have you tried diamox to see if you feel different?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Feelfit, you are right about stress/indecision.
Yes, it was an increased lymphocyte percentage. Based on CSF analysis profiling I read, my results don't indicate bacterial/fungal infection, but I'm no doctor. They point towards viral infection or MS. I have no other indicators at all of MS I believe.
What I believe I need is #1 to treat something properly and probably more important to have a LLMD/physician dedicated to having some more testing done on the blood from labs like Fry/Clongen/etc. My docs believe testing is secondary. Unfortunately, I do not. I think knowing your enemy is paramount to success IF it's achievable. Most LLMDs prefer not to do this. It bugs me, but...
To me it seems absurd to take 4-5 antibiotics/anti-malarials/whatever w/o even taking the time to do blood analysis.
Is this so crazy?
quote:Originally posted by feelfit: Increased lymph is simply a sign that your body is fighting an infection. My lymph is always elevated on every blood draw.....
Providing that this is related to lymphocytes?
At least you've knocked off another test, sealed another door. Your mind is free to move on. Indecision alone, can make us sick (stress).
I'll say it again, reading your symptoms are like reading my own. And while I've treated a bit more aggressively than you have, still not near baseline- before I began treatment.
Couple options: Test your urine for mycotoxins. Test for FL1953. Treat babesia aggressively, for 5 or more months. Duncani is a bugger. You may get some relief from treating that, but it is NOT the whole problem.
Ohhh, and look what Opus ^ has said about the opening pressure....hmmmm. Isn't the head pressure supposed to let up for a bit after a tap?
Thinking of you-
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Pardon me, I *meant that increased lymphs point to a viral component. Something that is always considered last by doctors- Timica may be correct here
I'm with you. I would like to know the monster that I am waging war against (if possible) instead of throwing various meds down my throat with fingers crossed.
Some would argue that people like you and me (and a few others) are nuts or hypochondriacs because we continue to look for a quantifiable answer. I believe that there is one.
Fortunately, almost every test that I have turns out positive- so that discounts the 'nut or hypochondriac' theory.
I don't think you're crazy at all You're physically ill and want to know 'why' that's NORMAL.
Good luck with the rest of your results...hope that they yield an answer.
Posts: 3975 | From usa | Registered: Aug 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I'm sorry you had to go through this but I guess it's good to be able to rule PTC out.
It's hard when they don't find anything wrong with the testing. I know exactly what you mean by not wanting to take lots of abx (or any drug) without a definitive test. I can agree with that...
Sometimes, we become ill with something that is not quite traceable. We fall through the cracks. I don't know why people want to think that we are some kind of "nut" just because the standard tests don't reveal what is making us ill. The fault is with the fact that medicine is not yet advanced enough. I don't know why that is so hard for people to believe.
In any case - I hope you find something that will help. You are not alone - if that is any kind of help to you. It pains me to hear that people may think "we" are having a mental problem when it's obviously something physical.
I had a very good job & I was independant. Why would I throw all that away to make 1/4 of what I was making by getting disability? They didn't even give me disability - they said I wasn't ill enough... Yet, I would be too ill to have a regular job. Stuck between a rock & a hard place. It's no fun at all.
Then, you get people talking about "drug seeking behaviour"... It really gets me annoyed. We just have to be extra strong & fight even though we are really in no condition to be fighting.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
So if you test positive on so many tests (for various infections, I presume, esp), that is hardly nothing! There may be more that they are missing, and the drs need to figure out what to go after first, etc. But that hardly means that nothing is wrong. I completely agree that you would want to know quantifiably what is wrong as much as possible.
Do you need a new LLMD??
And maybe the Diamox is worth a try to see if it helps, not as a cure, but to help symptomatically. It only helped me a little temporarily, but everyone is different.
Treatment for Lyme and Babs is what helped my horrible migraines and all my other pain. But I have been off treatment most of the time, due to a ton of obstacles, and one dr after another not being willing to treat me (or dumping me, or moving across the country, yada, yada, yada). Sorry for the OT rant.
Posts: 3792 | From around | Registered: Mar 2008
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quote:Originally posted by opus2828: They are saying 22 is not a high opening pressure? I know people diagnosed with pseudo tumor with that pressure!
Normal is supposedly 10-15.
Have you tried diamox to see if you feel different?
I have to disagree. Normal opening pressure is approximately 200.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Pab, are you saying my pressure is close to normal when converting cm to mm?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Yes, my 200 = your 20. A normal pressure for overweight people can be up to 250.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Good, I'm not losing my mind. Well, my head feels squished, but.... lol. Well, it's back to the drawing board, huh?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Are you questioning that you have tickborne disease(s)?
As others have said, your symptoms do match up.
If you are looking for proof of lyme, why not do the new culture test? You will have to be off abx for a month.
Have you had any coinfection testing?
Posts: 2888 | From USA | Registered: Mar 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I am never 100% sure I have Lyme and know I never will know definitively. My evidence is through specialty labs - Igenex of course. I wasn't CDC positive on their tests, but had 4 positive IgG bands and 4 IND IgG bands. I also had 4 positive IgM bands, but not specific ones to be CDC positive on my Western Blot. I never get it out of my mind that no other lab is capable of finding a single band on a Western Blot or C-6 peptide test. Very suspicious.
My only other 'evidence' is a CD-57 ranging from 28-mid 50s and a Babesia WA-1 IgG titer from LabCorp ranging from 1:256 to 1:2,048 - no IgM side.
I never had co-infection testing done at any specialty lab. None of my LLMDs ever wanted to do it and I saw some big names. I have not been treating TBIs for 6+ months. I'm on no antibiotics/anti-malarials. Time is out now. I have to do something.
It's hard not to question things when your testing is all over the board. Some here insist it is mold poisoning, others TBIs, others different issues. Maybe all, right? I guess when you have a hand full of darts, you can get "treatment paralysis" easily. That's what happens to me.
I'm too much of a black and white person. I don't have the funds necessary or have the doctor's interest to do specific testing that I want. I feel evidence = direction. LLMDs prefer often to not pursue this as much sometimes arguing they don't want patients to spend their cash on unreliable tests. I feel that's not always the true reason. Many have good intentions but this is a tough topic for me.
Regardless when faced with a fire, you can't just stay still.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Yes, you can know definitely. Get the culture test. It will be more expensive and time wasting to keep doubting and looking under every other rock for the answer. I don't think you will have much trouble getting someone to order this test. If you don't have a LLMD, then find someone in your state that can order the test. In some states nurse practioners can do this, as can naturopathic doctors, or even others. Check around. Even a friendly GP, if you assure him/her that they won't have to treat you.
Some lymenetters have already done this. Check back thru posts, or search archives and then contact those people by private message. Get the scoop from people who have already done it. Or start a thread and ask for replies from those people.
If you have lyme+ then all the problems you have are treatable.
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