Questions About Testing

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Stunned123
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Date Joined Apr 2009
Total Posts : 114
   Posted 4/9/2009 10:39 AM (GMT -6)   
 
Hello Everyone,
 
I am new here.  I have a question that I hope someone can help me with.  After visiting my Dr. with various, complaints, she ordered a serum Lyme titer.  I saw the results yesterday.  The Lyme came back Positive, result was 1.4.  They then did a Western Blot, which came back Negative.  So they told me that no, I do not have Lyme's disease.  My Question for you good people, is the Western Blot test reliable?  I have read so much conflicting information, I thought I would ask those who are dealing with the disease.  A little history about me:37 yr. old female, very active.  Have not had a known tick bite, since I was probably 12, raised in Missouri.  Have been dealing with muscle aches and pains, headaches, and fatigue for the last 3 years, however, have also just found to have hormonal imbalance in relation to my age.  Thanks in advance.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 4/9/2009 3:15 PM (GMT -6)   
Standard labs (such as Quest, PacLab, etc.) do not report all the Lyme-specific bands, therefore it is possible to be positive on the screening titer, then negative on the WesternBlot and yet still have Lyme. I would strongly suggest that you attempt to find a LLMD in your area to help you figure out if Lyme is a possibility in your case. You also might want to read the thread "The Basics - Newbies, check this out!" at the top of the forum for additional info. I hope this helps - take care,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), IV Ceftazidime (for Pleural Effusion), Colloidal Silver (used topically).


ticker
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Date Joined Feb 2003
Total Posts : 9208
   Posted 4/9/2009 3:58 PM (GMT -6)   

Hi Stunned123, welcome to the board!

Razzle is right.  Quest and LabCorp do not list all Lyme-specific bands on the Western Blot.  No test is completely reliable, and  results can vary by lab.  Many people who have Lyme do not have a CDC positive test.  The CDC requires several bands to be present for the test to be positive.  Lyme doctors usually look at which bands are positive, some are specific for Lyme.

Many people are bitten by ticks without knowing it.  They are tiny, they inject a numbing agent so you cannot feel them on you, and they often go in hard-to-see places.

Below is a Lyme symptom list.  You can have any combination of symptoms. 

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

You have a positive test and symptoms, you need to be treated.  It is very important to see a knowledgeable doctor.  Many doctors do not understand Lyme and treat with outdated protocols.  Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma.  Many people who have Lyme are co-infected.  It may affect treatment choice and progress.  It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. 

If you need a doctor recommendation, you can email me at ko_@bellsouth.net 

It is also important to learn as much as possible.  I recommend reading Dr. Joseph Burrascano's 2008 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf  He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner. 


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 4/9/2009 4:09 PM (GMT -6)   
Hi Stunned123,

I was recently diagnosed with Lyme but 5 years ago was experiencing very intense fatigue, brain fog, and the start of muscle aches. I was told my estrogen was low and that's why I felt the way I did. Well, I was never put ok anything because my liver enzymes were always elevated. Fast forward a few years later and I have Lyme. Lyme disease CAN mess with your hormones. Many women here have hormone and thyroid problems. I also have thyroid problems. If you know you got bit by a tick when you were younger, then I would say that it could be Lyme. Lyme can lay dormant for years....even decades and come back out again when we get stressed, from trauma or even from a round of antibiotics. Find a Lyme Literate Medical Doctor because even if your western blot was negative, you may still have Lyme especially since your titer was positive.
Have a blessed day!


Stunned123
Regular Member


Date Joined Apr 2009
Total Posts : 114
   Posted 4/14/2009 12:20 PM (GMT -6)   
Thanks everyone for the help.  I actually saw my Ob/Gyn today, who ordered a battery of tests, trying to find out why my hormone levels are messed up.  She actually brought up the Lyme test.  She pointed out that there was a "band" on the Western Blot that was positive.  She has referred me to an Infectious Disease Dr.  I see him in 2 weeks.  I am so tired of being tired!  I hope that they can determine what is going on and start treatment asap.  Thanks again for your responses.

Stunned123
Regular Member


Date Joined Apr 2009
Total Posts : 114
   Posted 5/8/2009 12:37 PM (GMT -6)   
Hello everyone,
I just wanted to do a quick update. I saw the "Infectious Disease Dr." yesterday. He feels that I have Fibromyalgia rather than Lyme. I had labs redrawn today. He is doing a Lymes Disease AB/Rfx. I found out that the band that was positive on my last Western Blot test was band 41 KGD. My titer was also positive. I am currently so symptomatic, with a lot of joint and muscle pain. I am so tired of all of this. I am afraid I am going to get fobbed off, that I have Fibromyalgia, knowing that I feel that I have Lyme. Any suggestions of a Lyme Literate Dr. around the NW New Jersey area? Thanks in advance.

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 5/8/2009 6:16 PM (GMT -6)   
Hi Stunned123.  I am sorry your appointment was disappointing.  Infectious disease doctors are not usually the best to see for Lyme unless they specialize in it.  You can email me at ko_@bellsouth.net for doctor recommendations. 

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 5/9/2009 2:15 AM (GMT -6)   
Doctors are so quick to say it's fibromyalgia. I was told the same thing. Fibromyalgia always has an underlining cause whether it be Epstein Barr, Lyme Disease, etc. Lyme Disease supresses your immune system and that's why some people pick up viruses like Epstein Barr.

Find a Lyme Literate Doctor and get tested. You should also be tested for viruses too. I had four. I had Epstein Barr, Cytomegalovirus, HHV6, and the standard herpes simplex 1, which is a fever blister. Before Lyme, I had never had fever blisters.....ever.
2003 symptoms started with very intense panic attacks and anxiety. Also had sound and smell sensitivities. Was in and out of the hospital from 2003-2005. Diagnosed with panic disorder.
2007 found an LLMD and was diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence. Muscle pain, joint pain, floaters, stiff neck, rib pain, slow thinking, brain fog, etc...
2009 went back to see LLMD. Diagnosed again with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start (starting slow and working my way up, Mepron(babesia), Ultram(muscle/joint pain), Thyro Complex 60mg(Thyroid), Probiotics ,Caproyl(intestinal candidas),Psyllium Powder(intestinal cleansing support),Bentonite Magma(absorbent aid for intestinal detoxification)
-Plus a ton of other supplements


Stunned123
Regular Member


Date Joined Apr 2009
Total Posts : 114
   Posted 5/9/2009 5:26 AM (GMT -6)   
Thanks again for the responses, Ticker and CajunGrl.

Ticker, I have sent you an email. I feel as if I need to find a Dr. who specializes in Lyme. I know there is a reason behind all of this muscle spasm, pain, headaches and now joint issues. It has been going on for 7 years now, but has gotten increasingly worse the last year. Has anyone had their eyes be affected? I now have "Dry Eye Syndrome." Which is a pain, as I can only wear my contacts for short periods of time. At first I assumed that it was hormonally related, but the more I read, the more I feel the hormonal imbalance is probably caused by the underlying Lyme issue.

Anyway, sorry to ramble, I am just so frustrated. I am determined to find out what is causing all of this and treat it appropriately. I am 37 and feel as if I am 80! Have a great weekend everyone.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 5/9/2009 6:01 AM (GMT -6)   
Vitamin A deficiency is an easily corrected deficiency that can cause dry-eye.
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), IV Milk Thistle, probiotics.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 5/9/2009 7:35 AM (GMT -6)   
Stunned,

You may want to get tested for sjogrens syndrome just to rule that out. It can cause really dry eyes and dry mouth too.
2003 symptoms started with very intense panic attacks and anxiety. Also had sound and smell sensitivities. Was in and out of the hospital from 2003-2005. Diagnosed with panic disorder.
2007 found an LLMD and was diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence. Muscle pain, joint pain, floaters, stiff neck, rib pain, slow thinking, brain fog, etc...
2009 went back to see LLMD. Diagnosed again with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start (starting slow and working my way up, Mepron(babesia), Ultram(muscle/joint pain), Thyro Complex 60mg(Thyroid), Probiotics ,Caproyl(intestinal candidas),Psyllium Powder(intestinal cleansing support),Bentonite Magma(absorbent aid for intestinal detoxification)
-Plus a ton of other supplements


Stunned123
Regular Member


Date Joined Apr 2009
Total Posts : 114
   Posted 5/9/2009 7:44 PM (GMT -6)   
Thanks for the ideas everyone, I am at a loss. My Opthalmologist suggested possible Sjorgrens. However, I only have the dry eyes. In fact I had my 6 month dental checkup/cleaning this week, and my Dentist said I am producing plenty of saliva. So, doubtful about Sjorgrens, who knows?! I just want to find a LLMD nearby who wants to investigate this further. I will wait until I hear what the Infectious Disease Dr. has to say when my labs come back this week. This board is a wealth of knowledge and so helpful!

Stunned123
Regular Member


Date Joined Apr 2009
Total Posts : 114
   Posted 5/10/2009 6:20 AM (GMT -6)   
No, band 41 was the only band positive. My titer was positive at 1.4. However, the lab was Quest Diagnostics. I am concerned that the more I read, the more doubt I have in the reliability of the different labs. The Dr. I saw on Thursday ordered a Lyme AB/RFX. I am waiting to see what he has to say, however, I feel I need treatment, even if he feels otherwise. On a side note, I have been running a low grade fever for 2 months. No other cold or flu symtoms. My CBC was totally normal.

Stunned123
Regular Member


Date Joined Apr 2009
Total Posts : 114
   Posted 6/1/2009 3:17 PM (GMT -6)   
Rather than start a new topic, I thought I would just post to my old one. Update: My Opthalmologist ordered a battery of Rheumatoid related tests, all were negative, including Sjogrens. Symptoms persist. The odd thing is that my symptoms have increased since Feb. including running a low grade fever, usually never more than 99.5.
I was referred to an Infectious Disease Dr. because of my positive Lyme titer. He re-tested for Lyme. Again the titer was positive and band 41 kda on the WB. (This was done through Quest labs.) He came out and told me to "put Lymes Disease out of your mind." 'I believe you have Fibromyalgia." Well, I am not willing to just accept this so I have found a LLMD in my town here in NJ. I have an appointment with him in 2 weeks.

My questions are: They can use a variety of labs, including IGENIX. However, Igenix does not accept my insurance. The other labs do. Including a lab MDL. I looked at their site and they seem to run a battery of tests including those for coinfections. I obviously would like to go with MDL, to help absorb some of the cost, as my LLMD does not accept insurance, and my first visit alone will be over $300. Is it worth it going with Igenix?  Also, how were the rest of your bloodwork results? For instance, does Lyme reflect in your CBC's? My CBC is immaculate, however I am so symptomatic. As you can tell I am so sick of trying to diagnose myself and being bounced from Dr. to Dr. Any input is appreciated! Thanks.

Heather

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/1/2009 4:26 PM (GMT -6)   
Dear Stunned, I am so sorry for all the difficulties you are going thru! It is just not fair!! I have been trying to study the Western blot. I do not claim to be an expert, or to know +more than the Drs, but will share some of what I've learned about band 41. Others may correct me if I am wrong.

My understanding is that band 41 indicates an infection that would be similar to Lyme, for example, syphillis. So, although it is not specific to Lyme, it is not specific for many other infections.

I will paste some info below that I have found regarding this band, because I believe your WB was significant enough to pursue a diagnosis for Lyme -- ie; for the Dr to figure out how to RULE OUT Lyme:

"41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody."

"According to Allen Steere and the CT Ag Station, perform only a Western Blot (NEVER and ELISA), and if you have band 41 and no periodontal disease, syphilis, or obvious arthritis, you have Lyme Disease.

Allen Steere in 1986, when he developed the first CDC Method to diagnose Lyme, recommended: ” Perform serial Western Blots to look for changing and expanding IgM and IgG antibodies,” since Lyme is a borrelisis, a relapsing fever, and the changing antibodies is a reflection of the varying antigens- and that, THIS CHANGING phenomenon means β€œthe spirochete remains alive throughout the illness.”

"In that full text report, Steere said one can distinguish between Lyme and syphilis, when one only sees band 41 (anti-flagellar antibody) in a person complaining of Chronic Fatigue Syndrome or Fibromyalgia.

Minor cross-reactivity was noted when sera from persons who had syphilis, periodontitis or other oral infections, or rheumatoid arthritis were tested with OspC, OspE, OspF, and p41-G. With relatively high degrees of specificity, ELISAs with recombinant antigens, particularly OspC and p41-G, can help to confirm B. burgdorferi infections."

So I would think it possible that you have something that has caused fibromyalgia, and it certainly seems definite that you have some sort of infection causing it. It sure seems that your WB indicates Lyme, but I'm glad you have more tests coming!

As Razzle says, 'There my 2 cents', only mine's worth about a dime! (just kidding, Razz, I'm still learning from you.....)
Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  What was this??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


Stunned123
Regular Member


Date Joined Apr 2009
Total Posts : 114
   Posted 6/1/2009 5:25 PM (GMT -6)   
Thanks +Lyme for the response. Yes, I have researched all about the 41 kda band myself. I am negative for syphillis and I just had my 6 month cleaning at the dentist, and I didn't even have a filling! So I am at a loss. According to the Infectious Disease MD, "most everyone would test positive for the 41 kda band." My Rheumatoid Factor was 8 IU/ML. but still considered negative. I think it is not positive until at least 14. Who knows, maybe it is the start of an arthritis. But I cannot help feeling that the Lyme needs to be investigated. At least then I will know that I have exhausted all of the possible causes of my muscle, joint pain and fatigue.

I am still curious if any of you that have tested positive for Lyme, had an altered CBC lab. I would assume that my WBC levels would be affected and they are not.

Thanks everyone for all of your help. And I truly feel sorry for everyone looking for answers and dealing with this disease and any other chronic disease!

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 6/1/2009 10:01 PM (GMT -6)   
I tested positive for IgM lyme and only positive for 41 IgG only,and my CBC white count is up and has been up for over 6 months,but all other blood work has come back ok. even the test for RA witch i was told i had 20 yrs ago. is this what your looking for?
   RD
                                                                                                                 
 
still looking for answers
 


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 6/1/2009 11:40 PM (GMT -6)   
The CBC is not always affected in everyone with Lyme. I've had completely normal CBC's at times...but not since 2004. My WBC count is very low now, especially the Lymphocyte count. And I also have been anemic throughout this time. Sometimes my platelet level also drops below normal, which has thus gotten me the Pancytopenia diagnosis (low RBC, low WBC and low platelets). I was told I had Fibromyalgia until someone did an autoimmune panel on me and my ANA came back positive. But I don't have any of the Lupus, RA, Sjogren's, or Scleroderma - specific antibodies, just a positive ANA, so they tell me it is an Undifferentiated Connective Tissue Disorder that leans towards Lupus. But then they also tell me this is secondary to something else but then can't figure out what the something else is. I believed all this rubbish until a brilliant Naturopath who really listened to me decided on whim to run a Lyme WesternBLot IgM & IgG test through IgeneX and the IgM came back positive (I have since had 2 more Lyme WesternBlot tests, 1 test was negative for both IgG and IgM, and 1 test was a CDC positive IgM result; each test showed different bands positive on the IgM & IgG). So now I know it is Lyme that is causing most, if not all, of my symptoms.
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), IV Milk Thistle, probiotics.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/2/2009 12:08 AM (GMT -6)   
I had a clinicle diagnosis of Lyme. My Western Blot wasn't positive but I had IND's on Lyme specific bands. I was negative for syphillis and I don't have periodontal disease. Plus I have most of the symptoms of Lyme Disease on the symptom list. For my blood test results, my white blood cell count was high and my sed rate too.
2003 symptoms started
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


Stunned123
Regular Member


Date Joined Apr 2009
Total Posts : 114
   Posted 6/2/2009 5:00 AM (GMT -6)   
Thanks everyone for the input. Yes, I was curious as to how Lyme would affect your CBC if at all. Meaning your White and Red Blood Cell counts. From what I have read, I should just pay the extra $$$ and have the tests done through the Igenex lab, when I see the LLMD.  At least that way there will be no second guessing. If Lyme and the other co-infections can be ruled out, then I will accept the diagnosis of Fibromyalgia.

Thanks again everyone for taking the time to respond.
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