Topic: How many are treating with a Negative Lyme Test?
lululymemom
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Member # 26405
posted
I am feeling a bit discouraged because after 10 years, I thought I finally had an answer and was even clinically diagnosed by a retired doctor. He was convinced I had Lyme and I even had a mildly positive Bart test.
My Igenex test was negative and even Dr. H. at Igenex told my ND that I am negative for Lyme. Now it's going to be harder than ever to get proper treatment.
I know I have positive bands that are specific for BB but if one or two bands was indicative of Lyme, why wouldn't Dr. H. be open to that possibility?
Another thing that didn't sit well with me is that my ND kept the blood sample in the fridge for 4 days before it was sent off to the lab (weekend and closed mondays). Aparently they told him it would be okay to do that. I called Igenex and they said it would be ok too..
I am curious how many out there are treating Lyme when all their tests are showing negative?
I know I need an LLMD, but that is next to impossible for me right now. Due to distance and cost.
posted
There's a difference between saying you are negative on a test and that you "don't have Lyme."
I was overall negative, but "had Lyme."
If Dr H is not your doctor, he can't clinically diagnose you.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lululymemom
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I absolutely agree, Lymetoo.. but he is the president of Igenex and the ND was willing to listen to him.
You would think he of all people would know that it should be clinical diagnosis and that is what he should be telling other medical practioners. He actually told my ND that he didn't think I had Lyme.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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lululymemom
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posted
I was also told by the retired Dr. M. (who happens to be an expert in North America on Lyme) that Bartonella is a self-limiting disease that usually resolves on it's own.
He also states that anyone who has ever owned a cat probably would have tested positive for bartonella at one time or another.
He believes I have an old infection that doesn't require treatment.
posted
I have never had a positive Lyme test, but there are many other things going on with me that point to a positive diagnosis of Lyme.
Posts: 14 | From Maryland | Registered: Mar 2010
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posted
One of the biggest problems with Lyme is the lack of a good test. Some doctors think the typical WB is very accurate. Others think IGeneX is very accurate. Some think even IGeneX can have false negatives.
I would not expect Dr. H to promote the idea of a clinical diagnosis when he is the president of IGeneX, though.
Posts: 984 | From US | Registered: Dec 2007
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posted
I have a couple of IND bands on Igenex but no positives. I definitely have lyme though. No doubt in my mind or any of my docs.
Posts: 707 | From Colorado | Registered: Jul 2010
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Tricky Tickey
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Member # 26546
posted
I was an actual Negative, but IND. It was a weak positive, so we treated it anyway.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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posted
I was Igenex IgG and IgM negative and babesia 1:20 or equivocal. I've improved 70% with aggressive babesia/lyme treatment.
Posts: 964 | From san diego | Registered: Oct 2009
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sutherngrl
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posted
I started treatment with a clinical diagnosis and a complete neg test result. Later the IGM part of my test turned CDC positive.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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lululymemom
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posted
I guess it validates the illness when you have proof to back it up. After 10 years of struggling to find an answer it would have been nice to say "this is definitely what I have."
Dr. H. has since spoken to me on the phone and told me that his lab is the only one that runs 4 different tests on the same blood sample so it is the most thorough.
In my case, since my infection is so old, it's probably alot harder to pick up. Even my 31 epitope confirmation test came back negative.
posted
I began aggressive treatment for lyme and babesia with completely negative tests through Igenex. I had one positive band on IGM. I saw an LLMD and based on my history (tick bite in upstate NY followed by acute illness 6 weeks later), I was given a clinical diagnosis of lyme and babs. I'm starting to see significant improvement after almost 2 years of treatment (sick for 7 yrs before diagnosis). Also, I recently had 3 positive IGG bands through Quest. I believe that my immune system was so supressed by lyme before treatment that I simply wasn't producing antibodies for the tests.
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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Dekrator48
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posted
I'm CDC and Igenex negative with some lyme specific IND and positive bands.
I had a clinical diagnosis.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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lululymemom
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posted
What I wouldn't do for a good LLMD right now... Oh well, I guess sometimes we take what we can get..
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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t9im
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posted
My daugher's WB was and continues to be negative for both IgG and IgM and is also negative for Babesia. She has been diagnosed with both based upon symptoms.
Her IGeneX negative results included:
IgM bands 34+, 41 IND. (need at least two + bands for positive)
IgG bands 30+, 34 IND, 39 IND, 41++. (for IGeneX you need two of thier ** bands and unfortunately 30 is not one of them).
We have lost trust in doctors and would not have been convinced of Lyme if not for the WB "indicating" exposure to Lyme.
At one point my daughter had over 30 of the Lyme symptoms on Dr. B's Advanced Topics in Lyme and she has all the babesia symptoms.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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TF
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posted
With all of your positive bands and indefinite (meaning weak positive) bands, I am sure my lyme doctor would say you were positive for lyme and would treat you.
Did you ever read the lyme doc's explanation of how to read the Western Blot results? It is under Quick Links to Popular Topics at the top of Medical Questions.
"In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.
This is true regardless of whether it is IgG or IgM.."
And, this doc wants the blood sent to Igenex immediately, as you will see. He says that if it sits around it can clump and the lyme antibodies get stuck in the clump and can't get free to show up on the Western Blot test. Then, you end up with a negative test.
Please persevere.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Hubby has had at least 10 different Western Blots over the years from many different labs -- IGeneX, MDL, Stoney Brook, Quest or Labcorp and more -- only had one band ever show anything at all (band 41 posiitve once) -- all other bands have always been completely negative.
But he has 2 positive recombinant antigen tests (test is not done anymore) and one positive PCR test.
His babesia antibody tests have always been negative -- but the old Bowen lab, F lab and Clongen have all found blood borne parasites on blood slides -- no one knows which strain of babesia he has or if it is actually some other parasite.
He did have a very mild positive Bartonella test once with F lab -- and both F lab and Clongen can see coccobacilli bacteria on his blood slides. Once again have no idea which strain of bartonella he has or if it is actually some other bacteria.
We think he also may have had either ehrlichia or anaplasma -- one test seemed to indicate that as well.
For hubby his abnormal SPECT scan was about as definitive as any test he has done.
And the important thing is that he has had dramatic improvement in symptoms from treatment for lyme, babesia and bartonella. It has been a long 10 year battle, but we finally seem to be making some significant progress.
For hubby the key was treating all 3 infections at once and then once he got the loads down he has treated one of the 3 infections much more agressively while continuing treatment for the other 2. Treating one infection at a time was what we did for probably the first 5 years of his treatment -- very little lasting progress with this method of treatment.
I would forget about spending more money on tests unless you want to do the Clongen bloodslide for $100 and would use my money to cover the cost of an LLMD.
Hubby's primary symptoms were neurological (Parkinsonian tremors, myoclonus, dystonia, seizure-like episodes etc) and G.I. (nausea, dry heaves, gastritis etc).
Bea Seibert
Want to add that for hubby another key was ramping up on multiple meds very slowly. In the past he would herx with every single dose of meds -- based on whatever the half life or time to peak dose was for that particular med. But he eventually worked up to therapeutic dose on 5 meds at once over about a year. And now he is on 2 IV meds and pulsing 3 orals as well.
His first antibiotic was actually IV Rocephin 7 years ago -- but I had to stop almost every single IV to give him IV Ativan for seizure-like activity. Now the IV Rocephin actually decreases tendon pain and overally body aches although it sometimes aggravates headaches.
If you can't afford an LLMD then I would suggest trying the Buhner protocol. But I would start with just one herb at a time and actually only take 1 capsule the 1st day and increase from there. Hubby did herx from many of the Buhner herbs and just as importantly it seemed like they tried to at least slow down the progression of his illness.
The herb cryptolepis was actually the first thing that ever stopped his Parkinsonian tremors(at extremely high doses). But at the time the herb was in short supply and we could not seem to repeat the experiment.
I have read since then that Buhner recommends combining cryptolepis and stephania. Hubby only ever took those separately -- but both do definitely cross the blood brain barrier. So the combo might be worth trying.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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ktkdommer
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Member # 29020
posted
There are three of us in varying degrees of Lyme with varying test results. My oldest had only several bands weakly positive but was interpreted as positive for Lyme because of family history and type of band. His only symptom was swollen glands for 9 years. He has now tested positive for babesia, HHV-6 and mycoplasms, supporting the Lyme disease diagnosis. I know my ILADS doctor would interpret your IGeneX labs as positive. Wishing you wellness!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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onbam
Unregistered
posted
I had 4 negative test results before I got my positive.
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posted
I posted this on another thread but after reading some of the replies here, I wanted to post my situation again...thank you.
I have been sick for over 4 years now. Lots of neurological symptoms, severe anxiety, shaking, tremors, insomnia, body vibrations, pain, nausea, etc. Have been on disability. These symptoms are all day, everyday. They started after a cold turkey from benzodiazepines in 2007. I was put on them for insomnia which was my only most prominent symptom then. Then I had all of these other symptoms appear and never go away. Since then I have been on and off many, many psych meds to help with the symptoms which I know has complicated things further. Nothing seems to help much and then I end up physically dependent on additional med without much help in symptoms. I did do the Igenex testing for the Western Blot and also the CD-57 test through Igenex. It's been very questionable whether Lyme is the explanation for all of my symptoms or if there is central nervous system damage from the benzos and other psych meds. Here are the results and I appreciate your help. I did test negative through CDC and Igenex but wanted to post here anyway to get input. These are Igenex results:
IgM-negative-no positive bands except a weak positive for band 18.
IgG-negative-band 39 was IND, and band 41 was positive.
CD-57 result was very good/normal per Igenex with a result of 185.
Sed rate was normal.
Thanks for your thoughts and help.
Posts: 51 | From Indiana | Registered: Dec 2009
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lululymemom
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Member # 26405
posted
Lori, I'm so glad you revived this link.. I never actually finished reading the responses and they are very informative.
Here is a good link if you want to look at natural antibiotics to start treating.. With equivocal results like ours, I think the best and safest way is to start natural and see if there is any response. Eventually antibiotics may have to be introduced.
My next step while on Byron White formulas is Teasel Root.. Alot of very good things written about this one.
posted
I had both a positive western IGG and IGM at IGenex after being sick for over 19 years. I had just gotten off three weeks of antibiotics for a sinus infection.
I had been off antibiotics for about two weeks when I had the IGeneX test. I've always wondered if being on the antibiotics first helped to get a very positive result.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
My daughter's first Western Blot was negative. It was so obvious that she had Lyme, as we had both been infected at the same time, and our long list of symptoms were nearly identical.
I had already had a positive ELISA and Western Blot through ( surprisingly) LabCorp.
We had her retested, and the second time her results were HUGELY positive. As her LLMD put it, and how awful as it sounded, she was "infested."
I have never been sure how her first test could have been negative.
Posts: 151 | From SW US | Registered: Feb 2009
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quote:Originally posted by lululymemom: I was also told by the retired Dr. M. (who happens to be an expert in North America on Lyme) that Bartonella is a self-limiting disease that usually resolves on it's own.
He also states that anyone who has ever owned a cat probably would have tested positive for bartonella at one time or another.
He believes I have an old infection that doesn't require treatment.
What on EARTH?! No, no, no!
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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lululymemom
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posted
Exactly what I thought! I am now reading on another post that it has since been discovered that Bartonella is not a self limiting disease and in most cases requires treatment.
�It can cause illness in people and dogs �In the last 20 years, over two dozen new strains of the pathogen have been identified �It is not a self-limiting disease, meaning it does not always run its course without medical intervention �The disease affects not only immunocompromised people, but also people with healthy immune systems.
I honestly feel like sending him this link so that he doesn't pass on this erroneous information to anyone else.
quote:Originally posted by aiden424: [QB] I had both a positive western IGG and IGM at IGenex after being sick for over 19 years. I had just gotten off three weeks of antibiotics for a sinus infection.
I had been off antibiotics for about two weeks when I had the IGeneX test. I've always wondered if being on the antibiotics first helped to get a very positive result.
Kathy
Probably. That is exactly the formula for producing a positive test. (well, usually it's 4 wks)
-- Can't believe any LLMD said that about bartonella. Hope that was years and years ago.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lululymemom
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posted
That was last September, but it does go to show the antiquated thought process..
posted
My first Igenex WB was negative, but I took some of the Buhner herbs to see if they would help. Then a few months later I got swollen glands and decided to re-test. That time the WB came back Igenex positive with four IGG bands. If you can afford it, I would suggest an antibiotic (or even Buhner or Zhang herb) challenge. I think it works that you do a protocol for 10-14 days and then test on the 31st day.
-------------------- We really know so little about the body and the microbiome. Posts: 261 | From Southern California | Registered: Jan 2011
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lululymemom
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posted
In my case, I was treating with Buhner herbs at the time of my test. I suspect leaving my blood sample in the fridge for 4 days before shipping out had some effect on the results but try and explain that to Dr. H. at Igenex.. He disagrees.
As TF explained:
"And, this doc wants the blood sent to Igenex immediately, as you will see. He says that if it sits around it can clump and the lyme antibodies get stuck in the clump and can't get free to show up on the Western Blot test. Then, you end up with a negative test"
posted
Thank you for the replies and all the suggestions. Are there other labs besides Igenex that you consider reliable or other tests you would request to have done if you had results like mine on the Western Blots and CD-57? I do have chronic or late life EBV and also Herpes virus. I have also had Peridontal disease in the past but not at the present time. Would any of those effect the bands and results I listed in my first post above? Thanks again..
Posts: 51 | From Indiana | Registered: Dec 2009
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