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Just found out I have active lyme disease. I am stunned. Help!

Lotus97

Senior Member
Messages
2,041
Location
United States
Borrelia are known to take cysteine from their hosts, and that, together with the inflammation that is produced by the immune system, can be expected to lower glutathione in Lyme disease, which has been observed.
I have problems with both Lyme and mercury toxicity. I was concerned about taking NAC because it could lead to elevated levels of Cysteine for people with mercury. Now I don't know if my levels are too high or too low. Is there anything I can do other than getting my Cysteine levels tested on a regular basis?
 

Lotus97

Senior Member
Messages
2,041
Location
United States
Just catching up here, everyone. I started taking doxy. I decided to do it because I am still not positive this is not a new infection from the test results. I am doing low dose chelation of metals because it seems like that is what brought the lyme out this time (that is assuming it is an OLD infection).
Liz
Do you know what the relationship is between Lyme and mercury/metals? I suspect I'm having similar problems with both and have been coming across information suggested they could be related such as this:

The Lyme cysts are constantly hatching new spirochetes. This process releases Hg and possibly Pb into the system.
The spirochetes need to find a new home, your cells, and begin to probe for weak cell walls and use infectious plasmids as well as Hg to weaken you just enough so they can slip into the cell.

When this occurs in\on the Heart you get Ventricular fibrillation since they actually use electrical current to probe for weak cells. If this happens in your brain you get all sorts of concentration issues...always feels like you lost a second or two of thought…

…or as Dr. Klinghardt put it in "Lyme without...";
It is a constant cycle of treating Lyme and removing Hg

Personally; if you are chelating and NOT treating for Lyme you will feel horrible because too many spirochetes are trying to find a new home without having Hg available to weaken your system. If you are treating Lyme without chelation then eventually the Hg will make it all feel worse.

NOTE: There is nothing wrong with staying on DMSA; the only issue is that you need to cycle the ALA so you don’t become too copper toxic. There are ways around that but so far NAC is the best copper binder yet stirs up Lead which can be hugely problematic.
 

brenda

Senior Member
Messages
2,263
Location
UK
Sorry I missed a question - I have been rifing and using Samento. Breakspear want to give me cetrifiaxone via a port.
 

Mog

Messages
91
Location
UK
Further to the Western Blot results I posted above, I've just got results back from InfectoLab. Looks like I definitely have Borrelia, Chlamydia pneumoniae, Mycoplasma and Ehrlichia/Anaplasma. The only one I don't have is Bartonella :( . They didn't test for Babesia.
Any comments on the results please? How do I proceed from here?

Borrelia burgdorferi Elispot LTT Results Units Reference
Borrelia burdg. Fully Antigen +3 SI <2
Borrelia OSP-Mix (OSPA/OSPC/DbpA +7 SI <2
Borrelia LFA-1 1 SI <2

The results of the Elispot-Lymphocyte-Transformation-Tests are an indication for an actual cellular activity against Borrelia burgdorferi.

Chlamydia pneumoniae antibodies
Chlam. Pneum. IgG antibodies (ELISA) 0.2 Ratio <0.8=neg, >1.1=pos
Chlam. Pneum. IgA anitbodies (ELISA) 0.1 Ratio <0.8=neg, >1.1pos

The specific Chlamydia pneumoniae IgG and IgA antibodies are no indication for a humoral immune response against Chlamydia pneumoniae. Please look at the Chlamydia Elispot LTT for the actual cellular activity.

Chlamydia pneumoniae Elispot LTT +15 SI <2
The result of the Elispot-Lymphocyte-Transformation-Test (LTT) is an indication for an actual cellular activity against Chlamydia pneumoniae.

Mycoplasma pneumoniae antibodies

Mycoplasma pneumoniae IgG (EIA) +1.0 Ratio <0.8=neg, >1.1=pos
Mycoplasma pneumoniae IgM (EIA) 0.2 Ratio <0.8=neg, >1.1=pos
Mycoplasma pneumoniae IgA (EIA) 0.2 Ratio <0.8=neg, >1.1=pos

The specific M pneumoniae IgG antibodies are an indicationf for a borderline humoral immune response against Mycoplasma pneumoniae.

Bartonella antibodies
Bartonella henselae IgG IFT <1:64 Titer <1:64
Bartonella Quintana IgG IFT <1:64 Titer <1:64

Serological no evidence for an infection with Bartonella henselae or Bartonella Quintana

Anaplasma phagocytophilum antibodies
Anaplasma phagocytophilum IgG antibodies <1:64 <1:64
Anaplasma phafocytophilum IgM antibodies <1:20 <1:20

No serological evidence for an infection with Anaplasma. Please look at the Ehrlichia / Anaplasma Elispot LTT for the actual cellular activity.

Ehrlichia / Anaplasma Elispot LTT +18 SI <2

The result of the Elispot Lymphocyte Transformation Test is an indication for an actual cellular activity against Ehrlichia / Anaplasma.

C reactive protein (CRP) 0.2 mg/l <5

Anti Nuclear Antibodies

ANA (EIA) 0.39 Ratio <1.0

Included are auto-antibodies (IgG) against the following antigens: Chromatin (dsDNA, Histones), Sm/RNP, SS-A, SS-B, Scl-70, Centromer, PCNA, Jo-1, Mitochondria (M2), Ribosomes, nuclear extracts. There is no evidence for antinuclear antibodies.

CD 57 Flow Cytometry

Leucocytes 5.15 tsd/ul 4 - 10
Peripheral lymphocytes 30.10 % 18.0 - 51.0
Lymphocytes 1550 /ul 468 - 5100
Natural killer cells 10.19 % 6 - 29
Natural killer cells 158 /ul 60 - 700
CD 57 positive NK cells 0.77 % 2 - 77
CD 57 positive NK cells 12 /ul 100 - 360

The CD 57 cell count is an indication for a chronic immune-suppressive situation caused by Borrelia burgdorferi.



 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Further to the Western Blot results I posted above, I've just got results back from InfectoLab. Looks like I definitely have Borrelia, Chlamydia pneumoniae, Mycoplasma and Ehrlichia/Anaplasma. The only one I don't have is Bartonella :( . They didn't test for Babesia.
Any comments on the results please? How do I proceed from here?

Borrelia burgdorferi Elispot LTT Results Units Reference
Borrelia burdg. Fully Antigen +3 SI <2
Borrelia OSP-Mix (OSPA/OSPC/DbpA +7 SI <2
Borrelia LFA-1 1 SI <2

The results of the Elispot-Lymphocyte-Transformation-Tests are an indication for an actual cellular activity against Borrelia burgdorferi.

Chlamydia pneumoniae antibodies
Chlam. Pneum. IgG antibodies (ELISA) 0.2 Ratio <0.8=neg, >1.1=pos
Chlam. Pneum. IgA anitbodies (ELISA) 0.1 Ratio <0.8=neg, >1.1pos

The specific Chlamydia pneumoniae IgG and IgA antibodies are no indication for a humoral immune response against Chlamydia pneumoniae. Please look at the Chlamydia Elispot LTT for the actual cellular activity.

Chlamydia pneumoniae Elispot LTT +15 SI <2
The result of the Elispot-Lymphocyte-Transformation-Test (LTT) is an indication for an actual cellular activity against Chlamydia pneumoniae.

Mycoplasma pneumoniae antibodies

Mycoplasma pneumoniae IgG (EIA) +1.0 Ratio <0.8=neg, >1.1=pos
Mycoplasma pneumoniae IgM (EIA) 0.2 Ratio <0.8=neg, >1.1=pos
Mycoplasma pneumoniae IgA (EIA) 0.2 Ratio <0.8=neg, >1.1=pos

The specific M pneumoniae IgG antibodies are an indicationf for a borderline humoral immune response against Mycoplasma pneumoniae.

Bartonella antibodies
Bartonella henselae IgG IFT <1:64 Titer <1:64
Bartonella Quintana IgG IFT <1:64 Titer <1:64

Serological no evidence for an infection with Bartonella henselae or Bartonella Quintana

Anaplasma phagocytophilum antibodies
Anaplasma phagocytophilum IgG antibodies <1:64 <1:64
Anaplasma phafocytophilum IgM antibodies <1:20 <1:20

No serological evidence for an infection with Anaplasma. Please look at the Ehrlichia / Anaplasma Elispot LTT for the actual cellular activity.

Ehrlichia / Anaplasma Elispot LTT +18 SI <2

The result of the Elispot Lymphocyte Transformation Test is an indication for an actual cellular activity against Ehrlichia / Anaplasma.

C reactive protein (CRP) 0.2 mg/l <5

Anti Nuclear Antibodies

ANA (EIA) 0.39 Ratio <1.0

Included are auto-antibodies (IgG) against the following antigens: Chromatin (dsDNA, Histones), Sm/RNP, SS-A, SS-B, Scl-70, Centromer, PCNA, Jo-1, Mitochondria (M2), Ribosomes, nuclear extracts. There is no evidence for antinuclear antibodies.

CD 57 Flow Cytometry

Leucocytes 5.15 tsd/ul 4 - 10
Peripheral lymphocytes 30.10 % 18.0 - 51.0
Lymphocytes 1550 /ul 468 - 5100
Natural killer cells 10.19 % 6 - 29
Natural killer cells 158 /ul 60 - 700
CD 57 positive NK cells 0.77 % 2 - 77
CD 57 positive NK cells 12 /ul 100 - 360

The CD 57 cell count is an indication for a chronic immune-suppressive situation caused by Borrelia burgdorferi.
Has your doctor recommended antibiotic treatment?

I would also consider testing your Immunoglobulins, total and subclasses especially if you have tested positive for viral as well as bacterial infections. This testing seems to be overlooked in many cases and replacement (IVIG/Hizentra) can really help to make a difference.

Ema
 

Mog

Messages
91
Location
UK
Thanks Ema,
I'm waiting to hear the doctor's recommendations. I don't know whether to start herbals myself, or whether I could do more damage that way, by driving the bugs further in. I suspect I'd be better to start with abx, then add herbals later. I don't really know.
I had immunoglobins tested last year. I had low IgA. IgG and IgM were within range, but only just. Does IVIG/Hizentra help the low IgA? EBV showed up in my tests last year also.
 

Mog

Messages
91
Location
UK
Now somebody has questioned the validity of the tests as a means of diagnosing Lyme :( I thought they were sound enough.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
All Lyme tests have limitations but you've had good testing and both times have gotten positive results. If you have Lyme symptoms, that is enough for a clinical diagnosis and antibiotic treatment in my opinion.

My total IgG was in range but barely and I had two low subclasses which was enough to get me on Hizentra. With low IgA and low IgG, I would consider revisiting this. Many people I know with Lyme also have immunoglobulin deficiencies. I think treating those can help too.

I wod personally wait on herbals and start on antibiotics first though I know there are lots of people that do well with herbals. I just think the herbal protocols are so complicated and expensive and they both should do the same thing.
 

Mog

Messages
91
Location
UK
Thanks very much Ema.

I will note that about treating the immunoglobin deficiencies. I probably would want to start on abx first if I can.

Somebody has suggested that the Bartonella antibodies test wasn't conclusive at ruling out Bartonella, because antibodies were low in all the tests Could that be right? And how could I then find out if I do have Bartonella?
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Thanks very much Ema.

I will note that about treating the immunoglobin deficiencies. I probably would want to start on abx first if I can.

Somebody has suggested that the Bartonella antibodies test wasn't conclusive at ruling out Bartonella, because antibodies were low in all the tests Could that be right? And how could I then find out if I do have Bartonella?
My opinion is that if you have symptoms of Bart along with a positive Lyme test, you should be treated for Bart as well despite what the testing says since they occur together so often. Rifampin is commonly used for Bart.

Ema

\
 

Mog

Messages
91
Location
UK
Okay, thanks again. Thought I'd managed to at least rule out Bartonella but maybe not :( . Does it require its own abx, Rifampin that you mentioned, or will the other Lyme abx treat it as well?
 

snowathlete

Senior Member
Messages
5,374
Location
UK
If you have Bart symptoms then you need a better test. The test you've had has ruled out two of the most commonly diagnosed species but there are lots of species and more are found each year. There are only a few labs that test for the majority of them. As with infectolabs test for Lyme, they are not FdA approved. Doesn't mean they are bad tests, but it means you don't know for sure, so you'd have to reach your own conclusion as I did.

If you had Bart then there are several abx that have been shown in studies to be effective. Rifampin is one of the best it seems but cannot be used in mono therapy as Bart becomes revisitant. I am on rifampin and telithromycin for instance, but there are lots of combinations available. Some also work on Lyme, to varying degrees.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Okay, thanks again. Thought I'd managed to at least rule out Bartonella but maybe not :( . Does it require its own abx, Rifampin that you mentioned, or will the other Lyme abx treat it as well?
I have read of people using azithromycin but that seems to be less common than the Rifampin.

Levaquin is also used as well but it is in the more problematic category of fluoroquinolones which may cause tendon damage in some people.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Okay, thanks again. Thought I'd managed to at least rule out Bartonella but maybe not :( . Does it require its own abx, Rifampin that you mentioned, or will the other Lyme abx treat it as well?


Have you had a PCR test for Bartonella? It is hard to find in blood but worth a try.

Sushi
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
I am trying to now educate myself on Lyme Disease since that is now suspected. Dr wants me to take Igenex Lyme Panel (#6050). My question is why do that test and not the others like 5080 or 5085 which seems more comprehensive or 5090 and/or 5095. How do I know which test is appropriate. We are just taking the next step after the CD8-CD57 results were LOW. Thx
 

PhoenixBurger

Senior Member
Messages
202
I do not trust these "alternative" labs nor the doctors who peddle them. At all. Sorry. Went down this path and it is wrought with scam artists claiming to be LLMD's. people taking out 2nd mortgages on their homes, testing completely negative at Labcorp and Quest, only to test completely positive at the "other labs", while conspiracy theories fly around about how Labcorp and Quest are "testing incorrectly". The whole scene is a monstrous mess of nonsense, monstrous doses of antibiotics that damage the body (conveniently labeled "herxing"), insanely high office visit fees (cash only of course), and tens of thousands of dollars in products "needed" to kill the Lyme and coinfections.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I am trying to now educate myself on Lyme Disease since that is now suspected. Dr wants me to take Igenex Lyme Panel (#6050). My question is why do that test and not the others like 5080 or 5085 which seems more comprehensive or 5090 and/or 5095. How do I know which test is appropriate. We are just taking the next step after the CD8-CD57 results were LOW. Thx


I don't know the numbers of the tests but I'd get the one with all the co-infections.

Sushi
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
I don't know the numbers of the tests but I'd get the one with all the co-infections.

Sushi

Figures that is not the one the doctor is requesting. Is this just a scam to take sick people's precious money? The test I believe she is going for is #6050 which includes Lyme IFA, IgM and IgG Western Blots and PCRs for Borrelia. The other tests are called complete and test for other things except Borrelia. Why in the balze dont they have one friggen test to test for them all???? My doctor has admitted I will be her first patient she diagnosed with Lyme if this test comes back positive. She admitted she is not familiar with Lyme. I like my GP but I would goto other specialists if I could trust they really kenw what the blazes they are doing and stop treating labs and treating me as a lab rat.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Figures that is not the one the doctor is requesting. Is this just a scam to take sick people's precious money? The test I believe she is going for is #6050 which includes Lyme IFA, IgM and IgG Western Blots and PCRs for Borrelia. The other tests are called complete and test for other things except Borrelia. Why in the balze dont they have one friggen test to test for them all???? My doctor has admitted I will be her first patient she diagnosed with Lyme if this test comes back positive. She admitted she is not familiar with Lyme. I like my GP but I would goto other specialists if I could trust they really kenw what the blazes they are doing and stop treating labs and treating me as a lab rat.
IgeneX is a very reputable lab. I don't think it is a scam.

I think there are two ways you can go with testing. You can test everything under the sun upfront or you can just do the Bb Western Blots and see if they are positive. They hold onto your blood at the lab so if those come up positive, you can call them and have them add on tests for the coinfections (double check that they still do this though).

My doctor ordered the WB's for me - #188 and #189. The cost was about $160 which is much more affordable than the full panel.

There is also some overlap with the antibiotics used for Lyme and the coinfections so some doctors may choose the appropriate antibiotics based on the clinical symptoms (Bart and Babs have some common typical symptom profiles).

Ema