Positive for BB?

When I saw my dr a few days ago we went over my labs results that had come back. The Western Blot for Lyme disease. IgGi was negative. Good news, right? But strangely enough, IgM was positive by both standards - unconventional Igenex (where the labs were actually done) and CDC.

I was floored, I really didn't believe that I may have Lyme.  The dr told there may be a false positive and we ordered a confirmation test with Igenex.

The reason I think it is strange to have IgM (+) b/c my sxi started so long ago and logically it's IgG that should be (+) if I have Lyme.

As of my CAPi changes. I've been on Azith 300 mg x every 3 days for 2 weeks now. First 2 days I got sick from itwith my "usual" reaction: muscle spasms, twitches, general malaise, heart pacing, shivering ALOT, BP's up. I stayed in bed for 2 days and got better on 3rd. 2nd pill produced much lesser reaction and now, 2 weeks later, I am OK with Azith.

Time to start 2nd abxi, we decided on 300 mg Rifampin since Doxyi was so harsh on me. I am having cold feet. Another issue that I am having upper abdominal pain, perhaps pancreatitis, it just doesn't feel like gastric and radiate to the back. Shouldn't I wait it out before starting another abxi?

Nata.

P.S. Oh, also my absolute eosinophils are high. The dr asked if I have skin rash but I don't. Then he decided that it is a lab mistake. I have not taken any Benadryl since I started CAP, may be I should and it could ease my reactions?

 Arthritis, muscle pain & twitching, sinusitis, hypertensioni<, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpn IgGi< (+), CMV IgG (+), HLA B27 (+), ANA (+).

Comments

Thank Dar for your sharing

Thank Dar for your sharing of this information. I find it of interest to me. I am wondering if my approach to taking doxyi might work for you.  Ihad intense abdominal pain and nausea intitially when taking Doxy.  I have been taking it now since June 07.  I still must follow the same approach even now even though the discomforts from it are less. I have written about it several time here.  If it could enable you to tolerate it I would share again.

Louise

 CFS/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxy, Roxi, TiniPulse#4 Ended2/3/08. 

Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Correction: This is how I

Correction:

This is how I should have typed it, sorry my brain got confused from info overload and I saw pluses when there were stars. Stars on the left indicate meaningful bands and the result is on the right. I hope I got it right now. 

                    -          18kDa            -

                    -          22kDa            -

                   **   23-25kDa           IND(-eterminate)

                    -         28kDa             -

                    -         30kDa             -

                   **       31kDa            +++

                   **       34kDa            +

                   **       39kDa            +

                   **       41kDa            ++

                    -          45kDa            -

                    -          58kDa            -

                    -          66kDa            +

                    -          73kDa            -

                   **   83-93kDa           +

Nata. 

Arthritis, muscle pain & twitching, sinusitis, hypertension">i, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpni IgGi (+), CMV IgG (+), HLA B27 (+), ANA (+), Lyme Western Blot results pending. 

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

Hi, I also have positive

Hi,

I also have positive IgM and not IgGi for Borrelia from Igenix. The Banding is similar to yours. I also was suprised as first since IgM is acute infection. I understand that the banding of 83-93 is assciated with neurological symptoms.

I have noted in quite a few papers that IgM can be an indicator of a much later chronic infection. The reason is sometimes outlaid as being because it is consistently reactivating in such cases, but otherwise its not known why. Since I can date some symptoms back to 1989, this seems possible in my case.

I was skeptical about the IgM result being a false positive. I was told by  Igenix that IgM is more reliable than IgG, and that it was 97% accurate.

Being new to Lyme at that time, and a skeptic, I had the test repeated by LDR, Bremen, and got the same IgM result and similar banding. I also had a CD57 test done at Labcorp, and that came out as less than 60, which is a criteria they associate with Lyme. And a MELIZA which was strongly positive as well.

I am still not convinced of Lyme, but my herx response to Abxi has convinced me if its not Lyme its something similar in need of treatment; probably not a virus.

Dar 

Dar (UK): lowback & limb pain, GI probs from 2002. Dxi: chronic radiculopathies (MRI/Nerve), Lyme Borr (Igenix and LDR), etc.  EBV, Vit D ab,  ME/CFSi/FMSi, etc. Suspect: Cpni, Bartonella. Doxyi ceased due to GI.

Dar (UK): Severe lowback & limb pain (distal), GI probs. Dxi: chronic radiculopathies (MRI/Nerve), Late Neuroi Lyme Borr (Igenix/LDR), etc.  EBV, Vit D ab,  ME/CFSi/FMSi, etc. Cpni by DFM. 600 mg NACi, 40 mg omeprazole. Trying to add Dox

Nata, this may be why the

Nata, this may be why the CAPi may be perfect for you.  The very intensive BB protocolsi that many LymeLiterateMDs prescribe may be very detrimental combined with CPni. For me it iis certainly enough at this point in time and it does address all the forms of Bb.  This CAP is the slow and steady approach.  I to am Bb positive.  I was so very ill with the initial start up that I could not reteach myself how to knit.  I recent tried again and could figure it out.  That says a lot to me about my improvement in thinking capacity.  Both times I had the directions, this time I could understand them.

Louise

CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, TiniPulse#4 Ended2/3/08. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • CAPi(TiniOnly): 06/07-02/09 for CFSi<
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDNi 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
  • <

Here is the result that I

Here is the result that I didn't have handy when I posted my first post:

IgM CDC result:                IgM Igenex result:

                    -          18kDa            -

                    -          22kDa            -

                   ++   23-25kDa           IND

                    -         28kDa             -

                    -         30kDa             -

                   ++       31kDa            +++

                   ++       34kDa            +

                   ++       39kDa            +

                   ++       41kDa            ++

                    -          45kDa            -

                    -          58kDa            -

                    -          66kDa            +

                    -          73kDa            -

                   ++   83-93kDa           +

According to CDC criteria, the result is positive if 2 of the 3 bands are present: 23-25, 39, 41. In my case all of these were (++).

According to Igenex criteria, the result is positive if 2 or more double starred bands are present. However, Igenex said there is 27% chance for false positive perhaps due to the presence of some viruses. So, will see what confirmation test will determine.

May be that's why I am having such a hard time starting up the CAP. Too much of the endotoxini!

 Thank you Cypriane, Daisy, Sojourner and Marysia for sharing your experiences. I am going to look thru your blogs and pick up some wisdom there.

Nata.    

Arthritis, muscle pain & twitching, sinusitis, hypertension">i, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpni IgGi (+), CMV IgG (+), HLA B27 (+), ANA (+), Lyme Western Blot results pending. 

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

Hi Nata, I also tested

Hi Nata,

I also tested positive on the Igenex Western Blot IGM (for both CDC and Igenex ranges) but not on the IGGi after years of infection, and I definitely turned out to have full-blown Lyme disease, as did my two dogs (and every dog in the neighborhood we lived in at the time of contraction, which we now know was highly endemic).

General wisdom in the Lyme community is that Lyme is a clinical diagnosis and many folks with Lyme still test negative on both IGG and IGM. It seems only the lucky few of us get to have a positive test result to back up our diagnosis and to help convince insurance and doctors of our illness.

It is also believed that in some cases (perhaps many), the sicker you are, the less likely you are to test positive because your immunei system has been overrun and has given up fighting, hence the lack of antibody presence. For some, once they start treatment and test again, the Western Blot becomes positive as the antibioticsi help rally the body to start fighting again by producing its own antibodies.

It looks like you already tested for mycoplasma so you must know about co-infectionsi. There are many that come with Lyme Syndrome, and there is a real overlap between the Lyme, CPNi, MS, Parkinsons, ALS, Chronic Fatigue, and Fibromyalgiai communities. The main three co-infections I was tested for, Bartonella, Babesia, and Erlichia, all came back negative though my symptoms say otherwise. Unfortunately, the tests for many co-infections are even less accurate than the Lyme tests.

After two years of CAPs I have seen definite improvement and believe my Lyme load is low now and that it's mainly co-infections which are the last piece of the puzzle for me.

I've found Lymenet.org to be a good resource, especially in locating a local support group which has been an invaluable source of support and information.  Even though the symptom sets in Lyme are so varied, it was only after talking to other people with Lyme that it all rang true for me.

Best wishes,

Marysia

Hi there Nata........I say

Hi there Nata........I say good on your doc for checking everything. You might want to get tested for some other things too........like Bartonella, Babesia, mycoplasma...some others if you haven't already. The important thing to remember is that the tests for lyme are a total disaster (even those done at Igenex) because they were developed based on faulty science from the get go. A positive IGMi could be a sign of ACTIVE infection not just recent infection. For example my son has all three CDC bands positive on IGM--23,39,41 and we think his (initial?) infection dates back to when he was around 8 and had sudden hearing loss (no known cause). This was 7 years ago. He now has subtle neuroi symptoms. In some cases, it's a tangled web we weave with a multitutde of infectionsi each benefiting and enabling the other. Best to you, Lexy --------------- "Chance favors the prepared mind." --Louis Pasteur Husband treating MS with CAPi
--------------- "Chance favors the prepared mind." --Louis Pasteur Husband treating MSi with CAPi

Nata - What I have learned

Nata -

What I have learned about the wonderful world of lyme Western Blot testing is this - what matters most is which bands were positive on IGGi and IGM and not whether one or the other is positive or negative.

In the blog's posted here of some of the success stories - for example Karl, Sojourner who were treated for both CpNi and lyme none of them I believe tested positive at all on Western Blot for lyme but were treated based solely on the basis of which test bands were positive and physician assessment of symptoms.  This is also the case with my husband as well. 

My husband was negative on both IGG and IGM on Ignenex Western blot for lyme.  But he was positive for bands 31 and 39 and a couple of others that are uniquely specific for borrelia. 

He is currently being treated via a very aggressive version of CAPi that is designed to get at lyme, cpn and mycoplasma and seems to be improving.

Don't know if that helps but wanted to share our experience.

Daisy-Caregiver- Balo's Concentric Sclerosis.  CAP 5/07.  Minoi, Roxy, Diflucan 1-31, Rifampin, Bactrim DS,  Novantrone, Doxyi<, Azith

Daisy - Husband on CAPi 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MSi drugs killed him.

Daisy on her own CAP 11/2012. 

Hi arthritic.  See

Hi arthritic.  See  http://www.cpnhelp.org/steve_js_update_the_signi< concerning my husband's recent Igenex Western Blot Assay for Lyme, especially the comment with the details.  A little bit Lymie is still Lymie, and those results were after almost 1-1/2 years on the CAPi.  Tomorrow we leave for an appointment with a leading Lyme treatment specialist in another part of the country.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.