@Stacey1121 , am I reading your post correctly in that you have a positive PCR for three TBDs? If so, what were your antibody tests like? Relative to your possible IgG subclass deficiency(ies), did you ever have the vaccine challenge to see if you had CVID?
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Low overall IgG serum and Low subclasses 1 and 2?
- Thread starter marcd43
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My pcr is a lyme dna test that was pos for borellia burdorferi, borellia recurrentis, babesia divergens, ehrlichia chaffensis - repeated blood work for lyme from several labs kept coming back indeterminate or negative. No I have never had the vaccine challenge for CVID - is that the only way to diagnose it? I am scared to have any "vaccine" as I don't even vaccinate my kids and my body is not strong.
Clinicians are so siloed. I wish we could roll up a good immunologist with an ID and a rheumy, but that is not the way it usually works.
I would talk with a good immunologist, and along with your records of low IgGs, I would bring those positive PCRs with me.
I don't know if one HAS to have the vaccine challenge to be diagnosed with CVID, but my understanding is that it helps with insurance if you are considering the IVIG route.
I was worried about the vaccine challenge as well.
I would talk with a good immunologist, and along with your records of low IgGs, I would bring those positive PCRs with me.
I don't know if one HAS to have the vaccine challenge to be diagnosed with CVID, but my understanding is that it helps with insurance if you are considering the IVIG route.
I was worried about the vaccine challenge as well.
- Messages
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- Location
- Boulder, CO
I think this maybe what you are asking re antibodies:
Igenx:
IGM: Band 31ind, Band 39 indt, Band 41++, Band 83-93 ind
IGG: Band 31+, Band 41+
CD57 was 51 (40-98)
NK Cells were 2.3 (2.26-4.65)
LABCORP: only 1 band abnormal
IGG Band 41 Abnorma1
IGM Band 41 Abnormal
Igenx:
IGM: Band 31ind, Band 39 indt, Band 41++, Band 83-93 ind
IGG: Band 31+, Band 41+
CD57 was 51 (40-98)
NK Cells were 2.3 (2.26-4.65)
LABCORP: only 1 band abnormal
IGG Band 41 Abnorma1
IGM Band 41 Abnormal
CD57 and NK Cells aside, those Band results are for Lyme. The obvious question would be - relative to Lyme, when were those and the PCR tests taken, before or after treatment. But those results don't look at babesia etc; there are other tests for those.
I don't wish to go into the pitfalls of all the testing for TBDs etc, but the PCR results may be important. Regardless, I'd speak to a good immunologist about those low IgG values.
I don't wish to go into the pitfalls of all the testing for TBDs etc, but the PCR results may be important. Regardless, I'd speak to a good immunologist about those low IgG values.
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- 25
- Location
- Boulder, CO
Thank you @duncan - I will take the hundreds of pages of labs with me - at this point I think its my only hope. Did you do the vaccine challenge? Do you have CVID? Lyme? I think a lot of my symptoms could be related to the babesia - and some were better with treatment but returned with a vengeance when I came home after 4 months - I did not stop treatment but it was not as intense. I am still on Ivermectin and sida acuta for the bab, IV levaquin for the sinus and teeth infections (I had all of my root canals removed and cavitations cleaned) - I feel awful if I try to go off the abx. If one has IGG subclass deficiency it would seem impossible to fight these infections and really make progress. I def have a lot of viral load too. I am scared of the ivig - but some people seem to have good result - even when its rough at the beginning.
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- 25
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- Boulder, CO
PCR was before treatment - have not repeated yet. I never had bloodwork done for babesia - I should do that before my apt in 2 weeks. My husband's PCR was only pos for the babesia divergens - so its def in the family here.
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- Location
- Boulder, CO
Did you have any reaction to the vaccine? I think I read you have to wait 4 weeks? Do you have low igg subclasses? I thought with low igg and subclasses you can qualify for ivig - I am guessing you have not done that yet?I am awaiting the results of my vaccine challenge as we speak.
And yes, I test positive for Lyme and for bartonella. I've babesia antibodies as well.
I did not have any noticable reaction to the vaccine, but it did concern me. Talk it over with the immunologist you select. I would recommend doing some homework on immunologists in your area. And yes, I had to wait 4 weeks for the subsequent blood draw. I have low IgG subclass 1 values, and have for a couple of years. I have not done IVIG yet.
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- Boulder, CO
I could not find a good immunologist in San Diego so I am going back to Colorado (used to live there) to see a dr. that is supposed to be one of the best, Dr. Issac Melamed at http://immunoehealth.com/about-us/providers/ - a dear friend and very accomplished integrative med doc, Dr. Robert Rountree referred me and said he is one of the best in the world. Please lmk if you would how the vacine challenge turns out. Btw - I think my Bb got worse when I treated the lyme. I tried herbal protocols for lyme and ozone but it did not work at all - I ended up on abx at Envita in AZ. I have been scared to take most of the hardcore drugs for Bb - I had a ton of artesunate infusions in AZ (I think they kept it at bay a little but did not kill it) and have only taken tinidazole, Ivermectin and the herbal protocol from Stephen Buhner for the Bb. The sida acuta in the protocol has been really helpful for me - making me feel a little better - but I think the Bb is still there and I don't want to treat it until I know about my immune system.
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- Boulder, CO
that is for sure! Thanks for the thoughts...I have done a lot of treatment and if any of my experiences might be helpful to you please lmk...
Jonathan Edwards
"Gibberish"
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Dear @Stacey1121,
I think it all revolves around what you call a good immunologist. Some of the very best immunologists in the world work in San Diego. Amongst the rheumatology/immunology community there are some of the greatest names of the last few decades there. But they may well say that you do not need any immunological treatment and they may be right. If by a good immunologist you mean one that will give you treatment then I am afraid you are likely to end up seeing a quack, and there are plenty of those around who are only too happy to offer you stuff and get reimbursed by your insurance.
If immunoglobulin deficiency was an important causal factor in the symptoms of ME we would all have known about it thirty years ago. It would have been an obvious link to the national CVID specialists. But nothing consistent has shown up. I would be very wary about diagnosing infections on DNA test without clinical reasons too. Again there are plenty of people who will sell positive results to tests like this to whoever wants them.
I think it all revolves around what you call a good immunologist. Some of the very best immunologists in the world work in San Diego. Amongst the rheumatology/immunology community there are some of the greatest names of the last few decades there. But they may well say that you do not need any immunological treatment and they may be right. If by a good immunologist you mean one that will give you treatment then I am afraid you are likely to end up seeing a quack, and there are plenty of those around who are only too happy to offer you stuff and get reimbursed by your insurance.
If immunoglobulin deficiency was an important causal factor in the symptoms of ME we would all have known about it thirty years ago. It would have been an obvious link to the national CVID specialists. But nothing consistent has shown up. I would be very wary about diagnosing infections on DNA test without clinical reasons too. Again there are plenty of people who will sell positive results to tests like this to whoever wants them.
TrixieStix
Senior Member
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My ME/CFS specialist just told me this week that a vaccine challenge would be the next step if my IGG tests come back showing deficiency.
SunMoonsStars
Senior Member
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Hi. How is your new doc ? I know one other person seeing him but don’t have much info. I’m on ivig and getting help in AZ and also long distance with ME Doc.
Hope your doing well. I’m in AZ and I saw you came here to A clinic to that I went to many years back. Small world overall. Blessings.