How can all my ingenex/wb tests for lyme and coinfections be completely negative when I'm so sick?
I was dxd with ALS but have clinical lyme symptoms. I do feel better with abx although I'm still getting weaker.
My T cells are low and now my doc suspects AIDS or cancer. How many fatal diseases can one person have??!!!
Posted by baileypup (Member # 22824) on :
Can you post your Igenex results? Most often those who are the sickest have a more suppressed immune system. I was only positive on band 41 IgG and IgM, and equivocal for babesia, yet have improved 90% with treatment.
MEANING OF IGENEX TEST:
The following is a breakdown of the Western blot only. As co-infections will show their own titers. A positive IgM is a sign of a current/active infection. IgG can be a sign of an older/longer standing infection and if symptomatic treatment is needed. If the tests are negative, remember no LD test is 100% reliable and sometimes a body is too weak to "mount" an accurate positive result. LD is a clinical diagnosis and ONE band in the test being positive can indicate Lyme Disease is present. Please keep reading.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~` PLEASE BE AWARE MANY LLMD'S CONSIDER A BAND THAT IS 'IND' AS POSITIVE, IGENEX TEST READS 'IND's' ARE SIGNIFICANT AND DOES NOT INDICATE A NEGATIVE.
IGeneX also now offers a new 30-31kDa Confirmation IgG and IgM test. If results from the initial Western Blot are positive for bands 30 or 31, it is possible that these could be due to cross-reactivity with several different types of viruses. In this confirmatory test, highly specific recombinant antigens are used to validate that the positive result is not due to cross-reaction with viruses. If ONLY band 31 is positive and no other specific bands are positive, it is recommended to have tests #488 and #489 31 kDa epitope Igm/Igg to make sure borrelia hasn't crossed reacted with several possible viruses....but AGAIN ONLY IF BAND 31 ALONE is positive.
There are nine known Borrelia burgdorferi genus specie specific KDA Western Blot antibodies (bands): 18 23 30 31 34 37 39 83 and 93. Only one of these Borrelia burgdorferi genus specie specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme disease.
Posted by TF (Member # 14183) on :
I have often heard it said that the sickest people have negative tests. Since the tests are all antibody tests, that makes sense to me.
A person whose immune system is not making antibodies to the diseases they have is going to be a very sick person. Their body isn't even trying to fight the diseases, either because it is fooled by the disease or they are so immuno-compromised (like AIDS my lyme doctor said) that they no longer have a working immune system!
So, I really doubt you have AIDS or cancer. It is that your immune system has been severely compromised by lyme and also very likely babesiosis.
Here is a quote from Burrascano:
"An unfortunate corollary is that serologic tests can become less sensitive as the infections progress, obviously because of the decreased immune response upon which these tests are based. In addition, immune complexes form, trapping Bb antibodies. These complexed antibodies are not detected by serologic testing." (page 4)
and...
"In addition, it is known that Babesia infections, like Lyme Borreliosis, are immunosuppressive." (page 5)
and...
"Chronic Lyme is an altogether different illness than earlier stages, mainly because of the inhibitory effect on the immune system (Bb has been demonstrated in vitro to both inhibit and kill B- and T-cells, and will decrease the count of the CD-57 subset of the natural killer cells)." (page 3)
So, based on all of this, I am very surprised that your lyme doctor would say he suspects AIDS or cancer. He should know and understand what lyme and babs can do to the immune system--it supresses it!
My lyme doctor told me at the first appt that lyme compromises your immune system, "like AIDS" he said to me. That is the nature of the disease you have.
I hope you have the very best lyme doctor in the country who knows all about this disease and what a person's blood tests can look like once lyme has nearly destroyed their immune system.
Saying a prayer for you tonight for some God-given peace of mind and wisdom for you and direction to get you moving forward.
In April it was 6 years since I completed my lyme treatment and I am still symptom free, enjoying my life. I had undiagnosed lyme disease for at least 10 years, plus babs and bart. I had many dark days in those 10 years.
Posted by karenl (Member # 17753) on :
Have you treated parasites? They definitely cause exactly that feeling. Especially the ALS is often misdiagnosed. cpn? pylori makes you feel very sick viruses tested?
Posted by Rumigirl (Member # 15091) on :
There is one clinic in CO that specializes in Lyme patients who have the ALS presentation. You should go there. And, at the least call them, tell them your situation in a sentence or so, and ask if they think that they can help you. They have more knowledge about Lyme/ALS than anywhere else. It needs to be treated differently than other Lyme patients.
TF is right.
Posted by glm1111 (Member # 16556) on :
Agree with Karen about the parasites. PLEASE consider this option and do a search on here.
That's why Lyme doctors treat clinically, by history and symptoms.
Sometimes, those who have originally tested negative test positive after doing some treatment. One reason for that is our body is stronger and has more responsive antibodies.
Pam Weintraub's book, "Cure Unknown" features a Lyme doctor who got the ALS presentation of Lyme. I recommend that you go read it - he got better from his treatment.
Posted by Beagle (Member # 29698) on :
Too Young,....pls look into this new test by Neuro Science. It's called My Lyme Immune ID. It is supposed to transcend conventional antibody testing by assessing Borrelia-specific T cell activation and cytokine (a type of wbc) production. My LLMD had me take this blood test because I don't have a positive western blot but have had 3 positive Elisa's since 2005. And, I am also very sick - have been since September 2010.
Since I lived with ticks for 15 years (my job put me out there) and I did have the classic rash in 2008 - she says this test will be definitive. It will show results even if the Bb is hiding as cysts and even if your body has stopped making antibodies.
Were you tested for strep, mycoplasma and vitamin D levels?
Posted by momlyme (Member # 27775) on :
How 'bout testing the air quality of your home... my son was not getting better from lyme and he and I were getting sicker and sicker. The whole family was getting sick in different ways.
We found out we had very high stachybotrys which is a deadly mold. It was not visible and we could not smell anything. It took air quality testing to find it.
Click on each infection, then click on "lab tests" for more info.
Best, Timaca
Posted by nefferdun (Member # 20157) on :
What hits me is you must not be seeing a qualified LLMD. You must be seeing a mainstream doctor that does not understand lyme and the co-infections. It is common knowledge that very sick people often do not test positive.
Please go to a LLMD as soon as possible. You can post for names of doctors in your area in the "seeking a doctor" forum. You live in the ground zero state for lyme. How could you NOT be infected?
You probably have babesia too which requires completely different drugs to treat. It can make you feel extremely weak and out of it. A doctor written about in the book, Cure Unknown, had an amazing comeback from ALS when he was given anti-malarial drugs for a trip to Africa. He also tested negative and accepted the diagnosis of ALS. His trip was supposed to be his last hurrah but he made such a huge improvement he began to live his life again. But when he stopped the anti-malarial drug, his weakness came back.
Then when he got home his son, who was a research doctor, told him lyme often tests negative. So the sick doctor went to a LLMD and started the treatment that saved his life. Later on he opened a clinic for ALS patients in Colorado. He said it is important that the ALS patient still be mobile for treatment to be successful.
So don't waste any more time with people that do not understand what you really have. I too will keep you in my prayers and hope you find help very soon.
Posted by karenl (Member # 17753) on :
The mold problem must be eliminated first - mold can kill you. If you have mold no treatment can work. Many people with lyme on this site found that they had mold - after years.
You also can get tested a spirostat labs - they can find all kind of spirochets, not only lyme.
Posted by lymeinhell (Member # 4622) on :
Up for 2young.. You still there?
Posted by 2young2dieMom (Member # 25434) on :
yes, I just learned I have monoclonal gammopathy, whatever that is.
Posted by Lymetoo (Member # 743) on :
MGUS??
There was someone else here last year who was trying to figure out if his MGUS was really Lyme.
Posted by payne (Member # 26248) on :
Monoclonal gammopathy refers to a condition in which a person's plasma cells produce an abnormal type of protein called monoclonal immunoglobulin, or M protein. The presence of M protein does not usually cause health problems, though in large enough quantities they can lead to a type of blood cell cancer known as multiple myeloma. Since there are typically no physical symptoms related to monoclonal gammopathy, doctors usually only recognize the condition after screening blood samples for other problems. Treatment is not needed, though people diagnosed with monoclonal gammopathy are encouraged to schedule regular checkups with their doctors to make sure they do not develop cancer.
Plasma cells are specialized white blood cells found in bone marrow. They produce a number of important antibodies and other proteins that allow the immune system to function properly. Due to a random mutation in certain plasma cells, they begin to manufacture quantities of M proteins. Since researchers are unsure what these proteins actually do, they frequently refer to the condition as monoclonal gammopathy of undetermined significance. The proteins do not seem hinder immune system functioning unless extremely large quantities are present. ...seems like lyme likly..
Posted by Caniggia (Member # 30479) on :
Maybe you can try this 2young2dieMom
Pine Cone Extract. Anybody tried it? It is suppose to be immune regulatory. I'm having 40 drops in a glass of water morning and night. I'm trying it for fun and to see if there is any kind of effect. It tastes real bad http://www.anapsid.org/cnd/diagnosis/cheneyis.html
3) Pine Cone Extract. Cheney said, "They make a tea from this in Southern Japan and they have significantly reduced cancer rates. It's thought to work at the gene level in lymphocytes, where it turns on IL-12. It also shuts down IL-10 at the gene level, and that causes a shift towards Th1. Pine Cone extract is expensive, but at just 10 drops a day (in the morning), of all the possibilities, it's probably the cheapest per day." It is called PineExtra, and 1 oz is about $60, but it lasts a long time.
Posted by nefferdun (Member # 20157) on :
See a qualified LLMD!
People die from misdiagnosis and in some cases denial or procrastination. If you continue to see mainstream doctors they will come up with diagnosis after diagnosis. They have no idea what caused ALS, lupus, MS, fibromyalgia, dementia, chronic fatigue or a multitude of other diseases and conditions. They just label the symptoms and throw up their hands.
Lyme and co-infections cause many problems to develop. It affects your brain so severely that often you don't have the motivation or the sense left to tackle it. You need help.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by nefferdun: See a qualified LLMD!
People die from misdiagnosis and in some cases denial or procrastination. If you continue to see mainstream doctors they will come up with diagnosis after diagnosis. They have no idea what caused ALS, lupus, MS, fibromyalgia, dementia, chronic fatigue or a multitude of other diseases and conditions. They just label the symptoms and throw up their hands.
Lyme and co-infections cause many problems to develop. It affects your brain so severely that often you don't have the motivation or the sense left to tackle it. You need help.
- Amen
Posted by lymetwister (Member # 19590) on :
I agree w TF,
You are responding to Abx and that is good. The sicker may just be your Herxing. Focus on detoxing.
Mold could be an issue as many other things, but Mold doesn't respond to abx, so I wouldn't be all over that right now.
Def. get an LLMD as the others suggest.
Dr. Burgdorfer identified over 29 different strain of Borrelia back in the 1940's per my interview with him, so it might be a strain that isn't even test for.
Stick with the clinical dx when you get a LLMD and see how it goes. Otherwise you will go 50 different directions.
The ones I know that were dx'd with ALS actually had Lyme first. Kind of like Michael J. Fox. He too had Lyme, then the Parkinsons. I believe Michael Jackson had Lyme prior to his demise.
Don't be scared by the Dx that are being thrown at you right now. If you don't have a Dr. right now that will treat you, perhaps Salt/c or Herbs until you do.
Best,
Gary
Posted by momlyme (Member # 27775) on :
quote:Originally posted by lymetwister: Mold could be an issue as many other things, but Mold doesn't respond to abx, so I wouldn't be all over that right now.
Not only does mold not RESPOND to abx...
Abx make the mold problem worse because abx are made from mold!
This becomes exponential if you have mold and metals(mercury and/or lead)!
![[Big Grin]](biggrin.gif)
http://www.anapsid.org/cnd/diagnosis/cheneyis.html