seekhelp
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posted
My neuro wants me to move forward with this test. He is telling me there are verifying beginning CSF pressure to rule out Pseudotumor Cerebri (PTC). I guess based on my test results so far CT of head, ultrasound of eyes and eye exam) that the likelihood of PTC is not extremely high, but certainly possible still.
He said they also would be looking for other illnesses when they take out CSF. This is what is on my script:
My question is this. How many here have had this procedure done? Have any of you ever had abnormalities show up that provided useful guidance? Or is this a situation where if one is coherent and not running a high fever that the odds of anything viral/bacterial stuff culturing is little to none?
This will not look for Lyme correct? I believe Bb can not be cultured.
I'm just sick of being sick. After 4 years, this is the one test no one ever did on me. Maybe it's worth my time regardless of it is tough or not. Whatever I have it just comes back over, over, and over. I was feeling a bit better the last 2 days and an hour ago start getting bad dry heaves and overall body pain.
I guess at this point who the hell cares about one more test!
[ 02-21-2012, 01:03 AM: Message edited by: seekhelp ]
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Keebler
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- I would not do this test.
"Who cares about one more test?"
Well, it's an invasive test that can cause severe headache for up to two weeks. It can cause stress, not benign. It's very expensive, even if insurance pays for it, it will likely just line doctors' pockets.
My guess is that this is not the only test not done.
Not to get your head spinning but there are many stealth infections and other conditions that could explain a lot and no lumbar puncture will come close to assessing all that.]
And, even if so, four years is often not long enough for effective lyme treatment.
Now, if I thought your doctors were really well rounded and adequately educated, then maybe, yes, a LP might offer some clue. But, there is so much still to look at that does not require puncturing your spine.
TESTS TO CONSIDER - TIMACA's thread -
Posts: 48021 | From Tree House | Registered: Jul 2007
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seekhelp
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Keebler, I have had ENORMOUS testing including HHV-6, EBV, Mycoplasma, CMV, Cpn, Mold, Parasites, mild Porphyria testing, and more. No real answers.
How do you rule out something crucial though if not done? Believe me, I do not WANT to do it one bit. I know it's invasive. But what IF it tells something revealing that makes a difference in my treatment direction? I'm less than two years away from losing everything I have financially. I have no room to not know.
What does one do seriously? The number of possibilities for any health condition is infinite and no matter how much people cherish their LLMDs for believing in their illness and considering different stuff, I find most LLMDs shy from testing at some point and prefer just to keep pumping drugs / herbs to patients. The desire to continually explore the true cause becomes watered down a lot after visits 1 and 2. Just my opinion, but it has been my experience w/o a doubt.
I begged to have a blood smear done at Clongen, but my LLMD didn't feel it was worth doing. My old MO LLMD felt little need to test anything and was happy with his original TBI diagnosis w/o any smears or other detailed looks. It makes me wonder at times honestly.
In fact, I suggested a possible illness/infection I may have based on an individual's detailed research reviewing my blood - MONTHS OF effort, not minutes. Even that preface did not offer enough incentive for any LLMD to hunt it down more. The odds of having it are low, it usually is life threatening, but the person who did the research dedicated good time in this. I had no proof of Bartonella whatsoever, but the LLMD was ready to treat that. I appreciate doctor's help, but one's mind must stay open even if the illness if not in your 'box of favorites/knowledge base.'
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dmc
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good luck, I personnally wouldn't have one again (only if in a coma) I had a horrible time w/one.
Neuros love this test...if nothing shows up you have psych problem, never had lyme etc.
For your sake, I hope something shows.
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seekhelp
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dmc, what happened after your test? Bad headache? I'm sorry it was so terrible. If I hear no one here yielded anything of value and were sicker than I am (very possible), then it may be worth it to re-consider. I don't have blinding headaches so this is one hesitation I have. I believe many who have moderate to severe PTC experience this. 1
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Keebler
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Do you trust that they will REALLY test ALL bacteria and ALL Fungi ? Do you trust that they have the very best methods?
I seriously doubt it. I've seen too many where this has been used to label someone crazy.
Still, have a conversation about what infections they will test. Just be aware that they may not have the methods or knowledge to test some infections that are stealth in nature.
Besides, are there no better tests for those which they will consider?
I'm sorry but I wondered about this and now I'm sure. I've officially left the medical model that our country so promotes - because - I know of so few doctors who live up to the name.
So, I'm probably not the person to ask. I wish you the best, of course, whatever you decide.
If you not yet been able to read it, before making your decision, you might read "Cure Unknown" - as it took the author many years to regain her health.
Same for the park ranger in "Under Our Skin" documentary. Remember that lyme cause changes in CSF pressure.
Still, about this LP, do what bring you peace of mind. That matters.
But you will need to be at peace with a psychiatric diagnosis that could well be handed to you and marked in the inside jacket of your medical file if their test is not adequate to tell you all that it would be good to know. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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seekhelp
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Keebler, great point. Absolutely not - they will not test for ALL of anything and never would use the best labs for anything most likely. My faith in the U.S. medical system is no better than yours.
The sad part is there is no way in hell any doctor will spend the hours it would take to have an in-depth conversation regarding a specific test such as this and what is looked for. Most wouldn't be educated enough to fully answer it. They would just know it's a lab send out and 'assume' the lab is checking for infinite possibilities in whole 10 minutes they allot for testing the medium.
I did read Cure Unknown. I have the Under Our Skin documentary. I'm still just not a believer that getting better should take 4-5 years. Brussells posted recently and said no way in the world would she do something that didn't yield positive result in weeks/months. There may be exceptions, but many here who get any resemblence of a life back seem to know quickly whether what they are doing treatment wise is right.
TF was ill 10 years and got with the right doc and was all back to her old self in 12 months, not 4 years. She said the last 4-6 months were just maintenance since it was winter time and her doc wouldn't pull her off. If that's the case and someone is waiting 3+ years, who is to say they ever had the same illness? What do we do - guess forever? Always believe tomorrow is that wonder day where we find the fork in the road? Hopefully yes, but...
Keebler, you better believe we ALL have psychiatric diagnoses in our file from conventional doctors most times given many's issues here. I'm not sure it takes a negative spinal tap result to make that happen. Just the patient's obsession with Lyme disease is reason enough for 99% of conventional doctors no matter how legit test results are provided. It's a sick and broken system not changing anytime soon.
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Keebler
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- Backing up a bit. Do you have MCS?
If so, scroll down to see all three notes I posted to this thread today, especially the NAGY one :
seekhelp
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posted
Not that I know of for sure, but I am definitely very aware of smells. I'm not sure they make me ill though. Never been diagnosed by a LLMD/doctor with this. I'm the person who can smell paint a mile away! My Dad can too. My wife is the exact opposite.
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Keebler
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- If you can smell paint a mile away, please do take a look and get that NAGY DVD if you can. It's $15 and I know that is a lot for us but it is a remarkable presentation.
THAT may be where your ticket to ride lies - not that lyme and other TBD are not an issue but, you may need help with being able to detoxify, etc. -
[ 01-17-2012, 10:57 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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jackie51
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Seek--It's taken me 4 years to get where I am today. And, while I'm 90%, I'm not well. Just had a debilitating headache yesterday and feel fluish today.
Did you ever treat for Babesia and Bartonella? Parasites? I wish you had a blog. Can you develop one? Maybe the outlet would do you good.
I wouldn't wish lyme, babs, bart, myco, etc. on anyone. I wish you could find answers to your health issues before you do actually wind up going crazy. Chronic sickness without a name would take many a strong person down.
I just talked with someone today who had a spinal tap done. It was not a pleasant experience and she learned nothing from it. Is this your only option? If they found nothing, then what? Ask them. It's not a cheap test and it's not without consequence. You have a right to know.
I can't imagine the exasperation you will feel when the test is physically demanding and they find nothing. Of course you need answers and you may get some, but be prepared to know nothing more.
BoxerMom
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quote:Originally posted by seekhelp: Brussells posted recently and said no way in the world would she do something that didn't yield positive result in weeks/months. There may be exceptions, but many here who get any resemblence of a life back seem to know quickly whether what they are doing treatment wise is right.
I read this quote from Brussels differently. I think she meant she wouldn't stick with something that yielded NO results. No change for the good or bad.
Often early treatment yields what would be considered "negative" results by most people. In Lyme treatment, what we consider "positive" makes us feel like crap! We herx!
But we get better, in time.
I'm wrapping up year 4 of abx treatment, and I probably have another year to go. I'm well inside the curve for standard treatment time for a chronic case of Lyme and co-infections.
Like many, I'm hovering around the 80-90% mark, but continuing to treat. Just uncovered either Erlichia or Brucella. Brucella, I think.
I'm glad I didn't give up at 5 months of treatment when I still felt like crap. My life sucked back then. I wouldn't go back for anything.
I hope your next step brings you some answers.
I've watched many B.duncani patients go through treatment just as you are: researching, testing, questioning and changing approaches constantly. These illnesses, B.duncani in particular, profoundly affect the cerebral cortex. The most rational thinkers can't find their ways out. It doesn't help that the medical system deals with us irrationally.
LLMDs aren't perfect, I know, but at least they have a clue. Regular docs have no clue, not a one.
The best improvement I've seen in B.duncani patients is with Mepron. Some did IV Ceftriaxone with oral Mepron. It gave them their brains back.
I know, you're not convinced that this is one of your issues. But many here on Lymenet think it is, and I would put the knowledge of any Lymenet member up against the knowledge of my LLND - and bet on the Lymenet member!! These people "get it."
You still have some time to get treatment going before you are destitute. I hope you will forgive the docs their weaknesses, and let someone prescribe for you. You will need to detox intensely, and go slowly at first, but that's how we make progress.
That's my 2 cents. I know you'll counter with a million arguments, but I wanted to chime in.
posted
I agree that I would not have one done again. It showed nothing, and I would get headaches for months after (The first few days were horrible. This is because your brain is actually getting sucked down into your spinal column!). Terrible pain for nothing..
Posts: 418 | From NJ | Registered: Sep 2007
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TF
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I had a spinal tap in 2002 when the neuro I went to wanted to look for lyme and I didn't know any better. (I had not yet found out about lyme doctors.)
I still have the script and I dug it up from my files just for you.
First, be sure it is going to be a fluoroscopic LP. Mine said it on the script. If it is on the script, they have to do it that way--doctor's orders.
This is the safest way to do a LP. They have you on a fluoroscope and they can actually see your vertebrae, etc. (like an x-ray). That helps with needle placement. You know if they knick your spinal cord, you are messed up for life. So, that's why you don't want them doing this without the help of the floroscope to guide them.
The staff that prepped me at the hospital said this was unusual. They said that people of normal weight aren't put on a fluoroscope. They just use the fluoroscope for the aged, the obese, etc. So, this shows that my doctor was being really careful.
The RN that looked at the script wrote on it "just routine"
I was shocked that he wanted me tested for HIV, but evidently all of these tests are routinely done on the spinal fluid.
The test is scary. In the operating room, there was a wall-sized mirror, and you are laying on your stomach with your back bare. So, I could easily watch them prep me, insert the needle, etc.
You feel a lot of pressure as they put the needle into your back.
Once the needle was in place, they tilted the table I was on so that my head was elevated. That helps the spinal fluid flow down to the needle. I watched them fill up LARGE tubes with my clear spinal fluid.
Of course, they tell you that you must not move under any circumstances throughout the procedure. You know that the reason this is so dangerous is that by you moving, the needle could get pushed into the spinal column and you could be a cripple for life.
So, all of this, and watching it, is nerve wracking.
In my case, the LP showed nothing. I just left that guy and didn't look back. He treated me like I had mental problems since I wanted more lyme meds. My regular doc gave me 30 days of doxy and my symptoms were relieved. But, when the medicine ran out, they came back. So, now I was a mental case for wanting more meds to treat my terrible symptoms.
In your case, if it were me, I would want the script to say right on it that they were to measure the opening pressure.
If it doesn't say that, what if the staff fails to measure your opening pressure? In your case, this is the only reason you are having the tap.
So, if your script doesn't say it, I would insist on a new script that does. I would not schedule the procedure without it. Don't let them tell you it is routine. Fine! Put it on the script.
In addition, I would tell the staff doing the procedure that they MUST measure the opening pressure and tell it to you. Tell them you are trying to rule in/out PTC and that is the only reason you are having the test done. So, you want to know the pressure right away. I would like it if the script said on it something about wanting the test for PTC diagnosis.
I would get the assurance from the staff that they are going to measure the opening pressure. People are human. You are trying to ensure that they don't forget to do the one little part of the procedure that is so very important to you.
All of these thoughts are my way of ensuring that you get what you want from the test.
Be sure you lay flat after the test. You will be there all day having this test done. When you walk out, you should go directly to the car and lay down in the back seat. I took a pillow with me for that purpose.
I laid flat in the car all the way home and laid flat at home for the rest of the day and that night.
I didn't have any headache at all and no complications. For example, I didn't need a blood patch (2nd procedure if the hole they poke in your spinal column continues to drip out spinal fluid into your body). If that happens, you go back and they shoot some of your blood into the hole and patch it up.
If you decide to have this done, why not ask for the script to say Lyme titre also? You should be able to ask for whatever tests you want also. The way your script is written, they will not be looking for lyme antibodies. You want them to look for them. See p. 8 of Burrascano where he says they rarely detect lyme antibodies in the spinal fluid, but they do detect it in some folks with lyme meningitis--they find it in about 13% of them.
My first lyme doc told me that one of the royals in Britain was sick and the doctors could not figure out what it was. Finally, one day she passed out and they took her to the hospital and did a spinal tap. It showed lyme. He told me that this woman had had 7 spinal taps previous to this and none of them showed lyme. But, the 8th one did.
Lyme can now be cultured. It is cultured in the new lyme test Burrascano helped get to market in the last few months. The lab that gets your fluid will not be culturing it, however. That technique is not available to them right now. Only that Advanced Laboratories (or whatever their name is in Pennsylvania) can do the culture currently, as I understand it. They probably will or have patented it.
Why not find out all that you can about the tests that will be done on the spinal fluid. Hopefully, the Internet can do this for you. For example, what does "protein" tell them, etc. This way, you will know what they will look for in the way of abnormalities and illnesses.
Hope this info helps you. If you get the test, let us know how it goes.
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Keebler
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- As one must be totally still for a certain amount of time,
what happens if one sneezes, shivers or recoils from pain or unexpected sensation?
(Even a fart could cause serious harm. And we all know everyone has to do that sometimes when we least expect.)
What if there is a fire drill? Or an actual fire alarm? (It happened once when I was getting an ultrasound and we all were escorted out mid-test).
What would happen if the power failed? A generator would likely kick in but would that cause a startle or glitch in the process?
I'd say the chances for permanent injury from a slip of either patient or personnel makes this a potentially very high risk procedure if there is a slip of the needle.
Now, most people can probably hold still for a little bit - I've just never been one of them. My body has startle reactions nearly before there is even the trigger. So this aspect is a lot more real for me and I wonder about how to ensure safety under all contingencies - for all patients.
I also have very visceral memories of seeing two interns trying to hold down my invalid mother and shoot medicine into her spine. That certainly did not go as planned.
She went into a coma that night, died a week later. Now, that may have happened but that botched spinal infusion was sheer torture for her, making the last hours of wakefulness just horrid.
I am far more cautious about needles and spines from her experience at just 56 years of age.
Surely, dozens of these are done each day in any given state. Still, I wonder just how many are really necessary.
Putting a needle into a spine sound like a breeze - technically. But this is human tissue, a human being. I just ask: Is this really necessary? Is there no other way? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
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If the patient fears that they will move, they tell that to the medical staff and they can sedate you.
I would get that arranged ahead of time with your doctor if you want it.
I have an elderly friend who gets sedated any time she needs an epidural injection. She knows she twitches, etc. and can't be still.
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sammy
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All hospitals have generators. They will continue to operate as usual when everyone around them has no power.
There will be no fire drill in the OR. If there is a fire alarm it will not be the horrible ear piercing screech that we are used to hearing everywhere else. Most hospitals use overhead codes and flashing lights on the walls to signal emergencies. This will vary somewhat hospital to hospital.
They will also position you properly and help you to hold still during the procedure. They don't want to hurt you or cause any complications. They want you to have a good outcome.
Seek, this is an awful decision that you have to make. You have been so sick for so long. I think that this is something that you really need to consider seriously.
The spinal tap is the only way they can find out what your opening pressure is to diagnose or rule out PTC. I think that you need to know if this is what is causing some of your symptoms.
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posted
Also, you get the headache because your ligaments stretch because there is less fluid supporting your brain. Your body replaces the fluid at different rates.
Your brain doesn't get sucked into your spinal column!
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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sparkle7
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Good luck, seek. I don't have any experience with this - so, I can't make any suggestions. I tend to side with Keebler but we all have to make our own decisions.
I have been ill for a long time... I've been to many doctors & I don't really trust most of them. I still don't know what my illness is exactly.
It's very difficult going through this & losing everything that you (I) have worked so hard for. It does help to be able to do all of this "by the book" to find answers or to get disability, credibility, etc. Sometimes, it doesn't always work that way.
I hope you can find the answer & get better quickly.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Seek piece of cake it really is. Most of these people haven't had one done. Don't read much into this as you will create more anxiety.
I had one. You can have one under fluoroscopy if you choose. Or from what I know and have been told the best docs doing the LP are the ER docs because they do so many and even better if you fine a younger doc with steady hands.
I had no pressure,pain, post-headache, nothing. I didn't load up on caffeine either.
They been doing these things for years starting off with using a quill.
Anyways, I wouldn't worry too much. But maybe this can be the positive point after the test for you to finally start doing treatment that you keep putting off.
PM me if you need to.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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I have had 2 spinal taps/CSF cultures. Not related to lyme/testing et al. They also checked my opening and closing pressure.
I had to have one after my surgery for Chiari Malformation because I developed severe meningitis and a reaction to the bovine pericardium patch that was used. We needed to rule out bacterial meningitis ( I had aseptic) and see how high my white count was in my CSF.
They also cultured for everything else you mentioned. For me there was no option - needed to be done.
I had a second one performed to re-check my CSF for signs of a patch rejection and possible continued low - grade meningitis and to check my pressure.
Following both procedure I did get the dreaded headache and needed a blood patch for one of them.
The procedure was a but uncomfortable but I just mentally checked out...Took a few minutes but the neuro-radiologist who did it was wonderful and used a very small needle on me.
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seekhelp
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Thank you so much everyone. I appreciate the detailed reponses It's impossible to respond to all, but you all have given me a LOT to consider.
I just found out today the facility will not do the tap on me due to my weight. My neuro told me to go there so at this point I'm very weary of his expertise on the subject. I do not feel comfortable at all in the level of detail provided to date by my doctor when it comes to procedure details, who would be putting the needle in, risks, exactly what is being looked for, etc.
I KNOW he has not looked at 98% of my medical history which bugs me a lot. His main focus is as my sleep doctor (CPAP scripts, sleep tests, etc.). This is the same doctor who said my fibromyalgia may have turned to Chronic Fatigue...
I guess what I want from a doctor is a truthful, educated guess on the odds of me having PTC based on my gender, symptoms, confirmed test results, and other factors. I am male and read that this condition is 20x more common in females ages 20-44. Also, children are the next higher risk category. He has said the odds are low based on my visual field exam being 100% normal 2x now. CT scans normal. MRIs normal.
Does anyone with meningitis or other infections in their CSF really have the ability to write messages on a forum, not run high fevers, etc.? Believe me, I live in a lot of physical discomfort and am very limited in my abilities. This can't be ignored. The other factor I think about a lot is how bad I get when I try to do physical exertion (bad head pressure). Being so sedentary now makes this a little less noticeable, but it's remembered real fast.
TF, you wrote a great post. You really know how to lay things out. I agree with all you wrote and especially about the part of forcing them to tell you the info you need from the test repeatedly. Mistakes happen all the time.
FYI, my opthamologist has refused to 'trial' Diamox. He said it has side effects and doctors just do things like that. Is this normal?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
From the tone of your original post, seems to me you've made up your mind, like you don't want to leave this stone unturned, so to speak.
I had a LP early on in my illness, prior to diagnosis. It was not a big deal, FOR ME. No headache or other problems. My good friend got the whopping headache and had to go back for a blood patch, which relieved things - everybody is different.
My LP did not reveal a thing which I could hardly believe as I was (and still am) a twitching, buzzing, vibrating, off-balance mess.
I have treated aggressively for 4 years (including 11 months of IV), all co-infections as well. I feel I have been more than patient - sitting around waiting/hoping something will work. So, like you, I understand wanting to explore any and all causes, as the years tick (sorry) by - I completely understand where you're at with this. I, too, want to discuss other testing, like tilt table, SPECT etc to maybe reveal more ideas as far as tx.
Could I just be out of luck as the infections are so entrenched in my brain/nervous system? Possibly, but I just can't accept that yet. Good luck, whatever you decide. TS
Posts: 566 | From West Coast | Registered: May 2008
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posted
Oh, well maybe not, from your most recent post! We must have been typing at the same time. Anyway, I feel for you and totally understand. Best of luck - hope we turn the corner soon....TS
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TF
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posted
I went to a hospital for my spinal tap. I believe a hospital (as long as it is a full-service hospital) will be able to do the tap on anyone regardless of weight.
Also, your doctor has said the odds of you having PTC are low. That's about all you will get from any doc. I don't think most are going to give you a number. The number would be pulled out of the air.
If you have read about PTC, then you can also decide if your odds are low based on visual field tests, etc.
I was not told any of the info you are wanting to know ahead of time: who will insert the needle, risks, what they are looking for, etc.
I don't see how a doctor can tell you who will insert the needle. It will be one of the staff at the facility. It depends on who is scheduled to work and who actually comes to work that day. What do you really want to know? The credentials of the staff that insert the needle? If so, call the facility and ask for that info. I don't really think you have to worry about this, though. No facility wants sued. Only qualified folks are going to do this. They will be doctors.
Risks: Look up the risks of a LP on the internet. I was never given any pamphlet or anything on the procedure by my doc. This is all par for the course.
What they are looking for: The doc is looking for your opening pressure. You know this. Then, since they are doing the tap, they routinely look for abnormalities in the fluid.
The doc also sounds typical in not looking at most of your file. He is only interested in his part of the picture. Doctors specialize. They don't care about most of the things that are wrong with you. They just care about what they are responsible for.
Maybe you would be more satisfied if you went to one more neurologist for a second opinion. Then, if you liked this doctor better and he thought the tap was worthwhile, you could go ahead with it and could discuss with him that you want the fluoroscope, the lyme titre, want it done at a hospital, etc.
Try to find someone who comes highly recommended and someone people say is a good communicator.
It is so terrible when you are really sick.
I once had a headache that was unbelievable. It was 24/7 and went on for months. After various doctors and specialists, I was at a neurologist's office. I asked if I could have PTC as it had been suggested to me by a lady whose daughter had it.
The neurologist told me right out to forget it. He said, "Believe me, you don't have it." I said, "How do you know." He said, "once you have seen hundreds of people with it, you know what they look like. Believe me, you don't have it."
He then told me what he believed was the cause of my headaches, and he was right. (I was having rebound headaches from a med the first doc gave me.)
This guy was a real expert. His name is well known in this area when you mention neurologists. So, if you can find a top notch neurologist, you may be convinced just at the appointment whether or not this is a worthwhile pursuit.
Also, think about what it will be like for you riding home from the tap laying down in the back seat. I find that uncomfortable mentally and I don't even have motion sickness. Things feel a lot different laying down in the car. Strange, more exaggerated, etc. I know you have motion sickness, so wanted to mention it.
Posts: 9931 | From Maryland | Registered: Dec 2007
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seekhelp
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posted
Thanks TF. I personally would rather have the test ordered by my Infectious Disease doc I see sometimes. I have some confidence in him and know he is more thorough. I may consider that route. You are right that one has to have some confidence someone skilled will be doing it for specific reasons.
This really is an agonizing choice as this afternoon all hell broke loose out of nowhere. Started to get severe head pressure, got very off-balance standing up, and lightheaded. At the same time my stomach has really been bothering me. My blood pressure shot up to 181/100 (pulse = 85 still). I still have not recovered.
Note, the few days I was away from my home on a small trip with my wife this DID NOT happen. Hmmmmm.. Not healthy, but the head issues/heart pounding was not there. Am I dying in my own house from something? Interesting. Or it could just be coincidence and the illness cycle returns like it always does. I've never been away from my home in the last 5 years for more than 3 days.
It's just like a terrible frontal pressure in my head. No spear headache or anything. Right over the eyelids. My right eye will feel swollen out of nowhere.
I wish neurologists were not so hard to get into. Sometimes the backlog is months and months. Not good when you're suffering, but same with LLMDs. If you're in demand, then that's good I guess.
I guess life is hard choices. The coward in me looks for every reason not to do the spinal tap. The reality is there may not be a choice given my problems. BUT, if it won't kill me, it probably is prudent to do aggressive Lyme/Babesia treatment first to see if that helps my head issues before diving into the shark infested waters (spinal tap).
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Keebler
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posted
- . . . "The coward in me looks for every reason not to do the spinal tap." . . .
[Well, I would say the intelligence & wisdom in you pose reasonable concerns to investigate. Of course, we humans are supposed to circumvent danger. That's normal and healthy. Weighing risks and projecting outcome is harder.]
. . . "The few days I was away from my home on a small trip with my wife this DID NOT happen." . . .
. . ."Am I dying in my own house from something?" . . . (end quotes)
I think your subconscious might be starting to communicate with you. Seriously. If you can spend some time each day, relax and just let your subconscious work with you, you might be amazed at what kind of questions just pop up.
Our subconscious pays attention even when "we" don't. We need to listen to what it can tell us, what it perceives. Our deep mind is our own best friend and detective.
I'm not saying jump on a horse and ride into a fire if you dream of such but paying attention to quiet hunches can save a life sometimes.
IDENTIFYING ENVIRONMENTAL ILLNESS & MOLD EXPOSURE IN PATIENTS WITH PERSISTENT LYME DISEASE
Lisa L. Nagy, MD Video $15.
(Excellent to get, even if mold is not an issue, this is full of great information.)
She is NOT A LLMD, however, she understands the kind of toxicity issues faced by many with lyme. She did not have lyme but overcame very serious MCS. She spoke at the recent ILADS conference.
It's a great presentation to see. The DVD can be ordered. Great detail about toxicity issues also here:
I know you said you were tested for "mild porphyria" (whatever that is supposed to be, I'm not sure). Please look back over some of the links here, at least the things you can do for yourself, just in case:
Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
I know I'm in the minority but a spinal tap saved my life (I had a CNS mycoplasma infection that did not show in my blood).
I would only do it at the request of an LLMD though (have had it done twice).
Neurologists are clueless on lyme and other infections that invade the CNS.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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seekhelp
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posted
Wow Mathias. What symptoms were you experiencing that made your LLMD decide to order it? I never even heard of a CNS Mycoplasma infection.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
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posted
Well, I saw my neuro today. Here's an update.
They are having trouble finding a facility/place to accommodate the spinal tap due to my weight. He thinks he can get it done and is going to the very top of Interventional Radiology. They want to do the tap under a CT-scan machine for precise placement of the needle. He said it's more accurate even than fluoroscopy.
He is willing to Rx Diamox (250mg daily) in the meantime, but he said if you have PTC, it's a temporary help only and it is useless to bring pressure down considerably.
He said he doesn't think I have an infection in my CNS, but they do the testing routinely anyway.
I brought up Lyme and company. He said "Lymes" would show up in the blood before the spinal fluid. He said if you're blood test is not positive, then the other would not be. He made no comments on Babesia - don't know if he even knows what it is honestly. He said Lyme is very rare and usually only a handful of people get it and those are ones who camped for prolonged time in the upper region of my State. It only comes from ticks.
He mentioned the brain surgery (shunt) often used to relieve pressure from the spinal column if bad enough. He even said if the situation was bad enough, he'd press to have a neurosurgeon do the surgery if for some reason I couldn't get a spinal tap done to confirm the pressure issue? HUH? NOT IN MY WILDEST DREAMS WOULD I EVER HAVE BRAIN SURGERY WITHOUT A SOLID, SOLID DIAGNOSIS!!!
I'm being referred out to a neurophthamologist for further evaluation too.
Another fun day...couldn't walk in a department store with my wife due to bad head pressure, ear pressure, head sensations and weakness. Felt like I needed to hold on to walls and was getting nauseated.
I'm not sure this spinal tap can be avoided. My vestibular rehabiliatation facility said today this is not coming from my neck. They believe there's another cause - I could've told them that.
So I'm screwed as always. Chained to the home. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sparkle7
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I don't know... Sounds like the neuro is trying to (as you put it) rule PTC out. That sounds to me like "covering his a$$". He's talking "Lymes" & no knowledge of babesia... He doesen't sound very good to me.
Excessive tests are really about protecting the doctor from malpractice suits. I'm sorry to be so cynical but it doesn't sound good to me about this test. Alot of tests aren't even all that accurate.
What about all the thousands of other things that you could "rule in" which could very well be causing your illness?
I'm glad that some people found this procedure to be helpful but from what you said, seek, it doesn't sound good to me. Like I always say - whichever way you decide to go is good with me but I would look for some other opinions.
I think you might even be better off going away for a bit if you can handle it. See if you feel better away from your home. I spent $10,000 + at the Fibromyalgia & Fatigue Center... I really wish I went on a vacation to Hawaii instead back then with the money I wasted.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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I think at this point I would do the spinal tap. But I would request that a lyme test be added to the things being tested for.
You might get lucky like hubby did and have elevated protein -- that would at least prove that you have a CNS infection.
WIll come back later and read the other responses and see if I have any more ideas.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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TF
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posted
Seek,
It seems to me that this neuro is really trying to provide you with some help or relief.
Unless he is doing the procedure or owns the facility, he is NOT making any money when he orders a spinal tap for you. Same for the shunt in the brain.
So, I conclude that this guy is really trying to get you some relief for your symptoms within the medical specialty he is in.
I would ask him to add mycoplasma and lyme to the tests that are done on the spinal fluid.
Posts: 9931 | From Maryland | Registered: Dec 2007
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sparkle7
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posted
I'm not trying to disrespect anyone but how is a doctor trying to be "helpful" if he doesn't know what Lyme Disease or babesia are?
The money he saves is money he might have to spend on a malpractice suit. If seek or someone did have PTC & he didn't test for it - he could be sued.
If seeks symptoms are mold or Lyme or from something else - it's pretty hard to prove... So, the doctor doesn't really have to worry about it.
The "system" is self-protective... from the doctors to the drug companies to the hospitals to the insurance companies to trying to get disability.
If one's illness fall outside of the "sanctioned" illnesses - one is pretty much "hung out to dry". I know my view may be cynical but I've been living it.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Rumigirl
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posted
I only read the first couple of posts, but wanted to weigh in. The ONLY test for Pseudotumor Cerebri is a lumbar puncture. If you have horrible headaches and head pressure, and you also mentioned other test results suggestive of this dx, then IMO you should get the lumbar puncture.
I had one done, when it seemed that I had Aseptic Meningitis. It wasn't so bad. The main things are: having someone experienced do it, if you have any choice in who does it, and LYING FLAT FOR a MINIMUM of an hour afterwards, and preferably longer. In other words, don't get up at all during this hour or hour +. That way you prevent the CSF leak that could cause the headaches and require a blood patch.
It doesn't have to be as bad as people say. And, in your case, it sounds like it's worth it. I would never recommend it as a "fishing expedition" or to test for Lyme (which can be done on the CSF, but is unlikely to be positive), but in this case, it sounds warranted.
Don't worry about it so much, if you follow these two things. Good luck, let us know what happens.
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nonna05
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posted
Had one done when I got out of HMO system and was able to get to REAL help!!!! what a laugh. not really ,what a cry.
Anyway an ID doctor ordered it and I still don't know exactly what they tested for...he said "EVERYTHING"...all neg..
But he's also the one that WON"T answer if they tested ,in any of the 20 tests they've done,
If I've been tested for Malaria, Shypillis sp?, or any Spirochete type illness.
I've asked at least twice in person and twice on phone. Now they just ignore me... Seems like a simple yes we did or no we didn't...
I had requested it at the very first visit and several after.
They also OK'd the steroid shots that sent my illness to a whole other level.BAD. Guess they thought all in head and just treat pain.
They did the tap in the hospital. was sore for weeks after. But I did not have the head aches you describe.
I DID have bad headaches and went to an ENT. No infections showed in blood or , x-ray, or CT....
But I kept complaining about the pain and dizziness etc.. Asked to have sinuses flushed, as in for real, not Netty pot stuff.
She finally agreed to check for blockage/sleep apnea what ever. Deviated septum.
WELL, she found three major infection's, and had to flay my checks from inside to scrape stuff off.
That's when for the second time , while ill , I knew normal was still in me some where. BECAUSE they used Doxy first and changed to Rifampin in 5 day's and within 30 hours I could feel ALMOST as human as before illness.
Then script was done in seven days and I was sick again ,fast. I begged for more Rifampin , it took them 4 dyas to figure out who would order it. Again popped back and felt almost normal for 10 days.
Then ID doc's--- ID's decided to up dose and put me on for 6 weeks.. Under label of Latent TB, then had me stop at 4 weeks.....
Lord if only they would have stayed with the Doxy and Rifampin after surgery and add the IV abx my Pulm. doc wanted a that time.....
But that's what this journey has been,,,lots of what if's and having to learn so much medical info .before diagnoses Aug.
just to try and stay on planet earth for a bunch more years in a state of decent health...
Still trying .....hope this new treatment starts helping soon..... So tap or not to tap?? Only your hairdresser knows for sure. SEEMS LIKE IT SOME TIMES...
posted
Ditto Seek what seibertneurolyme said about her husband and elevated protein. Same thing that was diagnosed after my lumbar puncture. It was that diagnosis along with a pretty convincing WB that I had done at Igenix that I indeed had LD.
You will have no problem with a lumbar puncture. Personally I was so sick in 2007 when I had mine done that I was begging doctors to order it, including Dr M. Finally after being admitted to U of M I convinced the ER doc to do it. And I felt nothing. No pain or headache after. I was up moving around several hours later. Now I know we are all different. This is my experience.
Now quit reading what others are saying and psyching yourself out. The majority of these reply's are from people who haven't had an LP and just go by what they here or read on the negatives of this procedure.
Well heck you know what taking meds have risks, leaving your house has risks, etc etc.
Get er done. Rule out illnesses. Find out what you have and treat it.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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sparkle7
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posted
No, I haven't has a LP - nor would I want one. Maybe if it was life or death... ?
I'm posting this link for an article about something different but it's about medical diagnosis prescribing. It's about Sleep Apnea but I think the same applies to other ailments...
The Sleep Apnea Business Is Booming, And Insurers Aren't Happy
I know people with Sleep Apnea & I know how bad it can be - so, I'm not minimising anyone's suffering - but sometimes these tests can be excessive.
What about the testing for prostate cancer? They recently proved it was inaccurate... I've read about alot of other procedures that are ineffective & money making for the system.
I don't know anything about PTC. I haven't studied it thoroughly. I would look for other causes but this is just my opinion.
I think it's a little nieve to think that medical care isn't about money making or protecting one's self against malpractice suits.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
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Idiopathic intracranial hypertension (IIH), sometimes called by the older names benign intracranial hypertension (BIH) or pseudotumor cerebri (PTC), is a neurological disorder that is characterized by increased intracranial pressure (pressure around the brain) in the absence of a tumor or other diseases.
Diagnosis
The diagnosis may be suspected on the basis of the history and examination. To confirm the diagnosis, as well as excluding alternative causes, several investigations are required; more investigations may be performed if the history is not typical or the patient is more likely to have an alternative problem: children, men, the elderly, or women who are not overweight.[4]
[edit]Investigations
Neuroimaging, usually with computed tomography (CT/CAT) or magnetic resonance imaging (MRI), is used to detect any mass lesions. In IIH these scans may be normal, although small or slit-like ventricles and "empty sella sign" (flattening of the pituitary gland due to increased pressure) may be seen. An MR venogram is also performed in most cases (or according to some experts, only in atypical cases[4]) to exclude the possibility of venous obstruction or cerebral venous sinus thrombosis.[1][3][4]
Lumbar puncture is performed to measure the opening pressure, as well as to obtain cerebrospinal fluid (CSF) to exclude alternative diagnoses. If the opening pressure is increased, CSF may be removed for relief (see below).[4] The CSF is examined for abnormal cells, infections, antibody levels, the glucose level, and protein levels. In idiopathic intracranial hypertension, by definition all of these are within their normal limits.[4] Occasionally, the pressure measurement may be normal despite very suggestive symptoms.
This may be attributable to the fact that CSF pressure may fluctuate over the course of the normal day. If the suspicion of problems remains high, it may be necessary to perform more long-term monitoring of the ICP by a pressure catheter.[4]
----
Seek - have you had a CAT or MRI?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This site also seems to have good detail:
Intracranial hypertension (IH) is the general term for the neurological disorders in which cerebrospinal fluid (CSF) pressure within the skull is too high.
(Old names for IH include Benign Intracranial Hypertension and Pseudotumor Cerebri).
8. If you have IH, then every time you have a spinal tap, the opening pressure will be high.
FALSE. It�s quite possible to have a normal or even low opening pressure and still have intracranial hypertension.
There are a variety of factors that influence opening pressure. First, it�s believed that spinal fluid pressure normally fluctuates, which may explain why sometimes an individual can suffer with a severe headache, feel suddenly better, then feel worse again.
Duration between spinal taps, a cerebrospinal fluid leak from an earlier spinal tap, the body�s position and medication can all affect opening pressure. . . .
-- Much more at all the links within this site. --
===============================
As there are numerous causes and possibilities - and if you are treating the things you know you have that could contribute to this and avoiding the Rx that could contribute, etc.
the main reason for the LP would be to determine if a shunt is needed. If so, it could be a life-saver as others have said.
It won't address the cause but - if IC is high and if they determine you need a shunt - it could make life more bearable for you while you then attend to the CAUSE.
I know this is not an easy decision. Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Do you have a gas furnace or a gas stove?
---------
Have you been assessed for Chiari Malformation? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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seekhelp
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Member # 15067
posted
Keebler, yes I have a gas furnace and gas stove. Why? I have been tested for carbon monoxide in my blood and it was fine. My furnace was checked this year - again fine.
Yes, I've been assessed for Chiari Malformation by a very respected neurosurgeon out of Cleveland Clinic. He did several tests including stand-up MRI and CINE flow MRIS..all normal.
Really, if this is the ONLY test to diagnose PTC, it seems ridiculous not to know after suffering for four years. This head pressure is not going away. The eye pressure is not. When I walk, it worsens. It makes me useless.
Sparkle7, I understand your concerns, but my reservation is with your outlook, how does one get anywhere with no trust of anyone? Looking at the universe of 'could be's' is infinitely bigger than rule outs. Could bes do me little good because you can't treat 10,000 possible things at once.
Believe me, I have little faith in doctors after all this too, but at some point, you gotta jump into something. Otherwise, it's a path to endless insanity. Well, I guess I'm there anyways. lol.
I will be interested to hear the neuropthamologist's viewpoint before proceeding with the spinal tap (if I do). If I had severe headaches daily, it would be a no brainer IMO. Regardless, debilitating head pressure ruins your life too. I can't make it across a shopping mall even once so that's hard to accept. Something needs to change. I'm way too young to accept I've lost all quality of life. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
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posted
Keebler, in answer to your question, yes I have had a CT scan of brain. Normal result. No recent MRI of brain, but my last four over the most recent 10 years have been completely normal. No evidence of anything. Never is on any scans.
The neuro also suggested I have gastric bypass surgery too. Said that may help me.
Sparkle7, very interesting article on the sleep study abuse. I totally believe it. I've seen it firsthand. It can be ridiculous, but can be a lifesaver for some. Some doctors go really overboard though.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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quote:Originally posted by Rumigirl: [QB] I only read the first couple of posts, but wanted to weigh in. The ONLY test for Pseudotumor Cerebri is a lumbar puncture. If you have horrible headaches and head pressure, and you also mentioned other test results suggestive of this dx, then IMO you should get the lumbar puncture.
I had one done, when it seemed that I had Aseptic Meningitis. It wasn't so bad. The main things are: having someone experienced do it, if you have any choice in who does it, and LYING FLAT FOR a MINIMUM of an hour afterwards, and preferably longer. In other words, don't get up at all during this hour or hour +. That way you prevent the CSF leak that could cause the headaches and require a blood patch.
It doesn't have to be as bad as people say. And, in your case, it sounds like it's worth it. I would never recommend it as a "fishing expedition" or to test for Lyme (which can be done on the CSF, but is unlikely to be positive), but in this case, it sounds warranted.
Don't worry about it so much, if you follow these two things. Good luck, let us know what happens.
- I am usually against LPs for various reasons. Would NEVER do one to diagnose lyme, that is for sure. But in your case, I would do it.
Be sure to lie flat longer than they even tell you to. Good luck!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sparkle7
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posted
re: how does one get anywhere with no trust of anyone?
It's not that I have no trust of anyone... I do trust myself. It's just that the majority of doctors that I have seen are incompetent in my opinion. I could be here all day & night typing out stories & posting links to corrupt stuff & rediculousness.
I've studied my particular situation for along time... I usually know more about my particular issues than most doctors that I've seen.
I do trust the eye doctor I saw a week ago - but it's not a serious thing like your situation. I can't do my own dentistry, either. I think the young lady who is my current dentist can handle filling a cavity - I don't think I would trust her with brain surgery, though. LP - I don't know?
I know you are going back & forth about it... What does your intuition say?
re: Yes, I've been assessed for Chiari Malformation by a very respected neurosurgeon out of Cleveland Clinic. He did several tests including stand-up MRI and CINE flow MRIS..all normal.
Why didn't this doctor suggest a LP for PTC?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I've had 2 done. I had no issues with the procedure, but they didn't find anything.
They supposedly "ruled out" MS, but then I was later diagnosed with it anyway. They "ruled out" lyme too from that test. Nevermind I had + blood test anyway.
They use tests for all sorts of purposes. I think it's more about what the insurance companies want to do that the docs, but that's a separate issue.
I had no side effects from either tap that I know of. An ID doc ordered one and neuro the other.
I tested - on the MS, but then they found lesions on the brain in MRI that were MS "like". I went to get 2nd opinion and she did yet another MRI of cervical spine area with no lesions so she "ruled out" MS..there you have it. I was able to stop taking the shots daily they had me on for MS. To "slow down" the progress of it.
For a long time I'd just tell people I had MS, at least they knew what that was! You gotta laugh, or crying is the alternative.
No one can tell you what's best in your situation. It's hard to know what doctors do and why and how it might affect your future medical care. Just do the best you can with it.
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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seekhelp
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posted
I saw a neuro-opthamologist today that is quite Lyme-literate. I think I need to move forward with the spinal tap. He was clear there is significant inflammation in my right eye by the optic nerve. He says people can't 'fake this' and it's important to get it under control. He said ruling out Pseudotumor Cerebri is a necessity at this point.
Looks like I'm doing it. I have to try. I have no life now. Even a long shot at a diagnosis and a chance to change things is so meaningful after 4+ years of hell.
The good thing is this neuro-opthamologist is really helping and running much more than my neuro. He's looking at TBIs and other issues. He's determined to get to the bottom of this.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sammy
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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
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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
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posted
Please let us all know how things go. We are all rooting for you! Hope you get some answers...
Posts: 2386 | From New England | Registered: Aug 2011
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Keebler
Honored Contributor (25K+ posts)
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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
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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: 3771 | 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
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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: 3771 | From around | Registered: Mar 2008
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lyme in Putnam
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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: 3771 | 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: 3771 | 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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