posted
My daughter's symptoms are only neuro and her white blood cell count is sometimes a little low and her liver enzymes are a little high sometimes. Not enough to get a regular doctor's attention, though.
Posts: 984 | From US | Registered: Dec 2007
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Same
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
mine are not only neuro, but labs are usually right on.
i usually have a few things that point to infection but nothing major, not to justify the reactions....
hang in b
best
d
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Yep, I have an absolutely perfect blood profile in anyway and certainly am no picture of good health. All neuro issues IMO. I have 4-5 labs consistently abnormal, some of which are on an infectious disease level.
I don't want to post them all again, but I'm saying all CBC, MCP, urinalysis, Sed Rate, RF, and a million other 'common' labs are perfect. it has no reflection on how I feel.
I don't know, but I sort of believe what that ER doc said. i think something else may cause some of our issues. It's astounding with your hubby's severe symptoms, there are no blood abnormalties. I swear I'd want to cut myself open and biopsy organs, skin, etc. to prove it. You get to a point where you almost have to.
Part of the issue/proof should be he's been on hardcore treatment for years and it sounds like the struggle goes on. That would seriously lead me to believe there's a missing piece to the equation.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
I have great blood work and have been sick has heck for years and also neuro symptoms along with everything else.
I think its bull for any doctor to make statements like that.
I think even when doctors say that if your blood work has more bands on WB you are sicker is bull too.
I think if they say you have more dots on your fry result you are more sick.its bull.
If think if they say you have to show abnormal labs on the typical panel to be sick. ITS ALL BULL.
You are as sick as you are sick..
And I do not care about what the labs say or not.
It is based on symptoms and the doctor SHOULD listen to that and thats the end of it.
I mean what the heck do they think that message gives. What?? that we are faking it if we try to tell them how bad off we feel.
Just ignore them... and you and your hubby know what conditions and condition your in..
There are plenty of doctors that DO NOT say that.
I have seen them both.>>
So you are Validated in my opinion FULLY!!
I hope your Hubby feels better..
Blessings
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Almost ALL my symptoms are neuro. My sed rate has always been normal. WBC low side of normal. I've had high CPR and normal CPR. But always ER visits come back with "completely normal" blood workup.
Forget them... we already know the ER docs don't know a dang thing when it comes to Lyme. Let it go in one ear and out the other.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
| IP: Logged |
quote: If your symptoms are mostly neuro do you have a normal WBC and normal sed rate and normal CRP?
Those labs are only usefull in "ER" qualifying acute cases. I never had those abnormal. My abnormal labs are various hormonal profiles, infections (lyme,CPN), VitaminD (extremely deficient) , carnitine and a few others.
There are a lot of labs in the world and most of them would be "normal" and most docs only run the absolute minimum labs (to cover their *** and tell you that "you are fine")
Posts: 856 | From MA | Registered: Jul 2009
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Dead on Coltman. ALL they care about at the ER is CYA. They are so thrilled to tell you the famous line..."I don't think we're going to get to the bottom of your issues here."
I feel like saying I don't think I'm paying for this visit you ######. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
posted
On paper, I look like the most healthy young person in the world.
For the past 10 years, since the age of 14, ALL my lab tests have been normal. I never ONCE in my life had labs that showed anything remotely wrong, even when I have been extremely sick with 'mono' or 'flu'.
For the first time ever, I got back an abnormal result- KPU was off the charts, as was my need for magnesium, and I have a severe allergy to milk. I found all this out last week.
Other than this, most doctors did not take me seriously because the labwork said I was fine and not just 'fine', but healthy as you can be. But at 24, I can barely function- neurological symptoms are too bad. I'm starting a second round of IV soon.
So yes, I feel that your frustrations are entirely valid.
Posts: 236 | From Washington | Registered: Jul 2008
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Great blood work. Was even told everyone should be so lucky. Hard to take when you tell someone you are so ill you think you are dying. It was not until protein was looked at for me. Very low. With high hemoglobins, sed rate of 2 and normal white count.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
quote:Originally posted by soleil16: On paper, I look like the most healthy young person in the world.
Other than this, most doctors did not take me seriously because the labwork said I was fine and not just 'fine', but healthy as you can be.
Yep, doctors treat lab work, not the patients! Sad thing is that they dont even know what most of the lab mean in depth. They just look if its "in range" - no matter low , high and whether there are other values which in sinergy show the problem
In fact most of them dont even look at labs. I once had lab done by one useless PCP, so after a few months I decided review the lab myself (on visit he said it was "normal") - bham I saw two values jumping at me and they were way out of range.
So I contact the office and ask WTH ? And you know the answer I received? -Because of malfunction in their computer that lab was not flagged as having abnormal value! Ee.g. program makes that decision (based on simple check vs ranges) ,he didnt even look at the lab!
Posts: 856 | From MA | Registered: Jul 2009
| IP: Logged |
ER would not admit hubby. So I had to take him from there to his PCP office and then back to the hospital for a direct admit.
The only abnormal value was total Bilirubin. It is almost always elevated when hubby is this sick. Was slightly higher than when he was in the ER on Tuesday. But of course the doc didn't want to hear that hubby has had normal reticulite count and other testing which proves that the reason the bilirubin is elevated is because something is killing off his red blood cells too quickly.
Have been wondering if I should have hubby tested further for porphyria/KPU -- that is one of the first tests he had done when he first got sick since his symptoms are primarily G.I. and neuro. Was told the test was negative, but he was only tested for one type I think.
Anyway, going to try for a levaquin scrip tomorrow. From reading the Factive thread it looks like others aren't doing so well on this new med. Hubby has been on that for about 3 months and usually whatever he takes for Bart, BLO, mycoplasma or whatever the mystery bug is seems to start losing effectiveness after a couple of months.
The symptoms he is having are very similar to what responded to Levaquin in the past.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Wanted to add that hubby has pulmonary nodules and at least one lesion on his liver and I think another on his colon. He has had way too many full body MRI's -- trying to rule out sarcoidosis.
But of course none of those findings are significant to the regular AMA docs. Not even the 5 or 6 white matter lesions on his brain.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
Mostly neuro symptoms, all great bloodwork except thyroid and sometimes liver enzymes.And of course, the Clongen wet mount. Kris
Posts: 520 | From Maryland | Registered: Jan 2007
| IP: Logged |
minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Arrgh. What complete bollocks the ER docs are talking. Their reasoning goes like this: unless someone has really abnormal bloodwork, they don't have LD/Co. Therefore, someone with normal bloodwork cannot have LD/Co, no matter how sick they are, how well the sx match up with TBDs, what independent tests say, or what their exposure history is.
See how simple and perfect life can be if you eliminate input from patients, disease experts, and medical literature you choose not to agree with?
I had a combo of neuro and physical sx, both severe at times. My bloodwork was always, always so normal it made me want to scream. Even my liver enzymes were perfect on high-dose abx. (I'm using past tense because I'm so much better now -- still have LD, latent; appear to have ditched the coinfections and viruses).
One of my LD friends has severe physical sx and some neuro problems (relating mostly to pain) and her bloodwork is usually normal, aside from ups and downs on iron levels (although more detailed tests reveal severe malabsorption of nutrients).
You're right, they're wrong.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi Bea,
Hope you're having a good day.
Have you had Steve's IgG IgM and IgA + Subclasses checked in a while? Protein levels?
My protein levels are so low they come back with "Alert" in red written across the page.
My immune markers - IgM is 1/2 of the low end of the normal range; IgA is slightly low.
In solidarity,
CBL
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hi Bea,
Another perfect blood work Neuro here. Perfect CRP, SED rates, CBC, all panels. Sometimes my lymphocytes are either a little high or low.
2 years treating, little progress.missing something.
Keep your chin up, you fight one heck of a fight.Your husband is very fortunate to have you and your determination to figure things out.
Best, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
If you have had a lot of contrast MRI's it may help to do lots of epsom salt soaks.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
posted
Yup. My blood work is almost always perfect. Once in a while I have low WBC, which we blame the abx for, and I have always had slightly elevated liver enzymes.
When I did have some slightly abnormal other stuff, the PCP told me that I was probably overhydrating! What idiots.
I think relying on blood work alone is so wrong. I feel like I'm dying, but the labs are normal and I "look well". Uh, huh. We'll just disregard the fact that my joints are inflamed, my legs are tingling so bad I can hardly walk and I have huge dark circles under my eyes. I look well, my a**
-------------------- "Few of us can do great things, but all of us can do small things with great love". Mother Theresa
posted
I wanna make a comment here you may or may not agree with....no big deal on my end but I want an end for all of us....there are over or about 150 autoimmune diseases ALL DO NOT FIT IN THE REALM OF A Rheumy...they maybe lyme created but may morph into an autoimmune disease which may require other kinds of meds aside from ABs...example CIDP....NEURO.....AUTOIMMUNE MYASTHENIA GRAVIS----AUTOIMMUNE --- NEURO.... VASCULITIS ...autoimmune.....autoimmune gastritis or liver disease....has anyone ever had an ACHR OR MUSK blood test???Know what it's for?? Take a look at the AIN autoimmune network...a person on that site was bitten four times and now has multiple autoimmune illnesses....not saying you don't have lyme just that it can create other diseases.....and that's what Marshall is saying on my other post......we have to keep on opening options/doors....normal blood test ok but what if one has neuro sarcardosis...what's the blood test....it's autoimmune.....do these docs run those tests??? or an ACE Test??? Do they even know about them??? ahh they p me off how about other viral like HPV, ETC.....FAR OFF NO....I HOPE WE DO ALL GET BETTER BUT AS I WAS TOLD BY A VERY GOOD FRIEND SEE THE DOCTORS YOU NEED TO SEE LEAVE THE LYME PIECE TO THE LLMD AND SEEK OUT OTHER FOR OTHER ISSUES......below is a site with top notch docs...like Latov, etc...over 200,000...you may want to use it...I was told by my LLMD it maybe best if I see an immunologist...he's on the site
posted
In the past, I had mostly neuro symptoms and I did have elevated CRP and SED.
I was told how my blood work was ABNORMAL for Lyme, so I think ducks have it both ways!
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
| IP: Logged |
posted
You can call them DUCKS, QUACKS, go to your LLMD, alternative doc...but I am going to tell you something, maybe you know and you can tell me something I am finding that we are the ones that have to make sure our heads are not up our butts and be as open minded as most of these docs are closed minded....
For people like I who have cortical perfusion go take that neuro phsyc test....mabye some relief....through that doc I am hoping to get a trasncranial doppler ultrasound and a referral to an autoregulation doctor at B&W..Pray...anyone had a transcranial doppler ultrasound???
-------------------- Raymond Leave the gun, take the cannolis Posts: 214 | From Rhode Island | Registered: Nov 2007
| IP: Logged |
Hubby had a SPECT scan done at Columbia in June 2007 -- right before he started seriously trying to treat bart. At that time he had mild - moderate global hypoperfusion including both temporal lobes.
We are seriously considering repeating this test in the next couple of months. I would be very surprised if the test results have improved.
Have you ever had a brain SPECT scan done?
The Levaquin so far seems to be somewhat of a miracle drug like in the past. Hubby's stiff neck, headaches and dizzyness are much improved. Now of course the question is what to add to the mix to really knock out the bart or BLO or mycoplasma or whatever the mystery bug is.
I agree with your philosophy -- you have to learn how to either work with or work around the standard AMA docs to get the tests and treatment you need. Not an easy thing to do. Sometimes it is worth fighting and other times it is just better to move on to a different doc or a different hospital.
And if your insurance does not require referrals you can give the new doc whatever documentation you feel is relevant. We always provide records to any new doc rather than having them transferred by a PCP or former doc. But of course this doesn't work out quite as well when you are in an emergency situation.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
Thank you Bea yes had SPECT done in 2009....disappointed one of the reasons I decided to take neuro phyc test...that and disability even though I would rather be at work it's a shame we have to jump through hoops for repect/integrity.....I understand getting another SPECT done but I want to find out what this transcranial unltrasound has to offer in contrast to SPECT...
My SPECT said either vasculitic or encephalitis....will an untrasound be more definitive for possible treatment?
How I hear that...stand and fight or move on...what stinks about these illnesses is that they can cause a mystery illness working in conjunction with one another....so it's not cut and dry and we may need more than one doc to help with the puzzle....,,,Did you see my post about biomedexperts? Check some of the docs out on this....I will e mail you PM you docs name to see the difference searching for hopefully the right team of docs can make....I don't profess to know just confess I want to be well...oh let me add Bea I was a tax accountant before I became ill....fiduciary stuff....you know estate, trust...enjoyed every minute if it especially the ones I worked with....
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic