posted
...when I feel so sick?? I just can't put it together, this doesn't make any sense. IT feels like my neck and head are crawling and swelling up, with pressure. I have brain fog and have no energy for anything most of the day.
Everything is absolutely normal except with slightly high bilburin, and low Alkaline Phosphate levels.
I think I need to check into a nice private hospital in the states and get some proper testing done. I have a feeling i'm getting screwed around up here in Canada.
Does anyone else also feel really sick but have perfectly normal blood tests?
Posts: 170 | From Vancouver | Registered: Apr 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Yuppers, that would be me.
At my sickest and i was pretty sick. All my blood tests were perfect. So perfect my dr diagnosed me with anxiety. He said he had nothing to go on, labs were all good.
Labs are still perfect now (or within range) except for my BUN. White blood cells are around 4 but still in range.
I think you will find most lyme patients have normal blood tests.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Yep. Mine labs have always been normal-even at my most sickest. Except for my lyme test & babs test 4 years ago finally something showed after 20 years.
The ducks I was bounced around with where like hey your labs are all normal so there must be nothing wrong with you. Arggggg!
It is a real mystery how we can feel & be so very sick & have normal labs. Really hard for me to understand this.
My personal theory is lyme likes to fly under the radar so to speak.
I guess just another stranger than fiction lyme thing.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
but, even if your WB shows lyme certain doctors will still say "you don't have lyme"
I have a very positive WB, and the lyme clinic doc told me i don't have lyme.
so, i got me a llmd and getting treatment.
it's a struggle.
Karen
Posts: 112 | From RI | Registered: Jan 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I think most of us have abnormal tests but run of the mill tests will not show abnormalities.
I have a TON of very abnormal tests but if I went into a doctor's office they'd likely run the standard tests and tell me that I am fine despite the fact that I have low blood volume with low red blood cell mass, orthostatic hypotension, inability to excrete sodium properly in the upright position, hyporenenimic hypoaldosteronism, high C3D immune complexes, abnormal osmalility and I'm on the edge of normal with many other tests. Oh yeah, let's not forget an IgeneX positive IgM and IgG.
Sad to say that many people who are very sick will never have the proper tests done because most doctors use cookbook medicine and they don't want to deal with anything that they can't easily solve. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Terry WHERE can I get these tests done?
Posts: 170 | From Vancouver | Registered: Apr 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
It does feel good to see that others share your symptoms. I too always get great bloodtest results. Just this week I met with a new doctor because I believe an old HP Ulcer is resurfacing and I needed to get established with a standard doctor here in my own town.
When he said he was going to pull bloodwork, I told him it is just a waste of his time. All my results will be perfect and he will see I am the healthiest sick person he knows.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
It is very frustrating when you are looking to find something that is causing you to feel like death warmed over and nothing is found.
I had so many different blood tests done on me, I felt as if I were a walking pin cushion.
I look back at all of my labs (mostly done prior to dx) that when asked my ducks all said were normal.
Not so. My lymphocytes were low. Platelets were borderline. Seds low.
I at least had the presence of mind to get copies of all of my tests/blood work.
It wasn't until I reached home that I really looked at them. I had taken the doctors word for everything being normal.
I knew from googling my symptoms that it could be Lyme or Lupus. However, my complete Ana panel was negative.
I have been dx with post traumatic stress disorder and anxiety/panic attacks.
I remember telling the ducks that I am anxious because I am so sick...I am not sick because I am anxious.
Hang in there. Get a copy of your blood work. Mine had some telling markers on it, once I looked them up.
However, I am glad that they ran just about every known test on my blood. Ra factor, parvo virus, HIV, thyroid, girly hormones, etc.
Thus, when my only positive test was band 23 on a Quest WB Igm, there was little doubt (for me anyway).
Find yourself a LLMD. Get tested through Igenex.
It is a frustrating, exhausting search....but, there are answers if you perservere and find the right doctor.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Loook on the bright side, normal bloodwork does not mean you don't have a potentially fatal TBD! So if you have Lyme, make sure you get treated for Babs & Anaplasmosis too*)! These people tested blood negative over & over!! ************************************
Am J Trop Med Hyg. 2001 Nov;65(5):603-9. Related Articles, Links
Tissue diagnosis of Ehrlichia chaffeensis in patients with fatal ehrlichiosis by use of immunohistochemistry, in situ hybridization, and polymerase chain reaction.
Dawson JE, Paddock CD, Warner CK, Greer PW, Bartlett JH, Ewing SA, Munderloh UG, Zaki SR.
Infectious Disease Pathology Activity, Division of Viral and Rickettsial Diseases, Centers for Disease Control and Prevention, Atlanta, Georgia 30333, USA. [email protected]
In the United States, human ehrlichiosis is a complex of emerging tick-borne diseases caused by 3 distinct Ehrlichia species: Ehrlichia chaffeensis, Ehrlichia ewingii, and the human granulocytotropic ehrlichiosis agent. Ehrlichioses are characterized by a mild to severe illness, and approximately 4% of cases are fatal.
Because these obligate intracellular bacteria are difficult to resolve with routine histologic techniques, their distribution in tissues has not been well described.
To facilitate the visualization and detection of ehrlichiae, immunohistochemistry (IHC), in situ hybridization (ISH), and polymerase chain reaction (PCR) assays were developed by use of tissues from 4 fatal cases of E. chaffeensis infection.
Evidence of E. chaffeensis via IHC, ISH, and PCR was documented in all 4 cases. Abundant immunostaining and in situ nucleic acid hybridization were observed in spleen and lymph node from all 4 patients.
Significantly, in 2 of these patients, serologic evidence of infection was absent.
Use of IHC, ISH, and PCR to visualize and detect Ehrlichia in tissues can facilitate diagnosis of ehrlichial infections.
Publication Types: Case Reports
PMID: 11716122
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Jon I know exactly how you feel. How is it possible to feel like slow death and it not show in the blood?
Explains how some docs think it must be mental issues bringing on these symptoms. Sometimes having more tests doesn't show what's going on too. How can my liver, gall bladder and spleen feel like they have been a punching bag and have tests and scans that show everything is normal.
How can one have so much muscle and nerve pain and tests by neuro show everything is ok?
That's why sometimes I believe someone has to live this to believe this.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
All my bloodwork is always normal, except for occasionally my hemoglobin. My original doc said it was psychosomatic, I was really sick but my brain was making me sick, even after my positive WB.
My CDC positive Igg on the Western Blot is the only thing that's ever shown up as abnormal.
I always say that I'm the healthiest sick person around! Thankfully that's true, or I wouldn't be able to fight this disease.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
We have tremendous stores of various nutrients that can try to help us.
Calcium is a biggie. It helps prevent EXCESSIVE metabolic acidosis in part due to EXCESSIVE inflammatory cytokines.
We do NOT store vitamin C.
"They" are "rethinking" IV vitamin C (NOT ORAL, it does NOT WORK!)for cancer. It apparently worked in large IV doses for 3 persons with cancer. Complete remission.
What I am talking about is the glycolysis pathway (which is the pathway Bb is taking) versus the Kreb's Cycle (citric acid cycle).
Citrates are one thing that INactivate PFK.
Bb is PFK dependent.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Sorry Jon to go off topic but wanted to understand what Marine was saying about citrates-
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Jon
quote: Terry WHERE can I get these tests done?
My LLMD ordered the C3D immune complexes and osmalility tests from a regular lab. My regular doctor didn't know what the C3D immune complexes meant. According to LLMD it meant that we were killing lots of bugs but I was not able to get rid of the debri at the intracellular level. I've yet to discuss the osmalility with my LLMD.
The other tests were done when I had my last big crash years ago. They were conducted at a research facility and I had to fly clear across the country to get them. The doctor who did them is deceased now however I think some of these tests will be easier to get now since some of these results have been found in CFIDS patients over the past few years. Not uncommon in lyme patients either.
The blood volume can be tested in a nuclear medicine dept.. My regular doctor didn't believe the results so she had it re-tested and the results were the same.
If you haven't already, get to an LLMD and they will look at your symptoms and hopefully determine what tests will be the most useful. They will hopefully refer you to a specialist for other testing, like the tilt table test if you need it.
The other option that can be useful is to see a LLND (lyme literate naturopathic doctor). They often run tests that M.D.'s do not know about or believe in but they can often yield results that are very helpful. Food allergy testing, nutritional status, metals, amino acids and others can help determine appropriate treatments to help correct some of the problems that lyme causes. One usually has to pay for these tests out of pocket. One such test allowed me to cut my pain levels by 50% without drugs.
Another consideration is some form of muscle testing. A number of people on this forum rely on it. Can be very useful but sometimes not easy to find a good practioner. Again, must be paid for out of pocket. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
THanks for all the replies, I guess I should be grateful the tests are normal and nothing life threatening. Seems like alot of people here have experienced this.
Posts: 170 | From Vancouver | Registered: Apr 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Jon, the point of my post was that you can have a life threatening TBD with normal bloodwork!!! So make sure you get evaluated appropriately & treated if you are clinically sick!!!!!!!!!!!!!!!!!!!! Take care-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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