Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Need help from the geniuses !
Tomorrow I follow up with LLMD. Hopefully I will start treatment.
I tested positive for M Pneumoniae AB. Is this a co-infection mycoplasma or did I pick it up elsewhere ? How do you know?
I tested positive for HLA-B27 antigen. Does this support a possible Lyme diagnosis ?
My neutrophils,lymphocytes,monocytes and basophils are very low. Platelet count very high.
1st western blot from quest had reactive 30 , 39 , 41 (Sep'16) 2 nd western blot from quest had reactive 41 only (Nov '16) Where did the other 2 bands go without any treatment.
Fibrinogen levels high. Pain level is off the chart. Infinity times infinity.
I ve already been diagnosed with hypogammabullinanemia. Did Lyme cause this ? I guess I was lucky any bands showed up on blot.
Will Doctor take Lyme off the table and treat only Pneumoniae?
Any relevant questions I should ask? Much thanks
Posts: 2977 | From Florida | Registered: Nov 2016
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
"I tested positive for M Pneumoniae AB. Is this a co-infection mycoplasma or did I pick it up elsewhere ? How do you know?"
This is often seen along with Lyme. I'm not sure it's possible to know exactly where it came from. Lyme suppresses your immune system so latent bugs can re-emerge.
"1st western blot from quest had reactive 30 , 39 , 41 (Sep'16) 2 nd western blot from quest had reactive 41 only (Nov '16) Where did the other 2 bands go without any treatment."
The WB measures antibodies that your body creates to fight off the Lyme. Lyme also suppresses the immune system. So your body could have stopped making those antibodies.
Also, Quest's WB tests for a limited number of antibodies. There are many more out there missing from Quest's test. Igenex offers a more full picture with a lot more antibodies, but it's also expensive and not everyone needs to test there.
"Will Doctor take Lyme off the table and treat only Pneumoniae?"
I don't think an LLMD would take it off the table, given your ongoing symptoms.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Dear WPinVA,
Wow, were you on the money !!! I knew that lymenet was the go-to source for Lyme sufferers.
Just back home from LLMD. Was started on the antibiotic and supplement protocol. The amount of instructions is overwhelming.
I was told that because of hypogammabullinanemia, I would need IVIG or I will never get better. I m working on that now.
Thank you all so much on this next chapter of my journey.
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
Just a response to quest, I agree but was completely shocked that I actually got a positive for Bart through them.
-------------------- Ill since 1998 DX 2005 Posts: 93 | From tampa, fl, usa | Registered: Apr 2007
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
I would say you were lucky to get a positive through quest Amberlin96.
Here s a story. . . 5 years ago my cat bit me( she was never good with manners). I washed the bite mark with hydrogen peri oxide and went about my business.
I spent the weekend out of town moving a friend and when I got home, a red line ran all the way up my vein in my arm.
Went to E.R. and they immediiately started I.V. med and yelled at me for waiting to seek treatment. They diagnosised me with cat scratch fever or bartonella henselae.
Well my recent blood work from quest showed I had no antibodies for bartonella. THATS IMPOSSIBLE.
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
Quest finds things once in awhile! Other times NOT!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Your so right lymetoo.
I wanted to go through Igenex but could not afford it.
Let's face it. . . Lyme is the Cadillac of diseases. If you want to get better, money helps the process.
Posts: 2977 | From Florida | Registered: Nov 2016
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quote:Originally posted by Bartenderbonnie: Need help from the geniuses !
Tomorrow I follow up with LLMD. Hopefully I will start treatment. [qb][quote] I ve already been diagnosed with hypogammabullinanemia. Did Lyme cause this ? I guess I was lucky any bands showed up on blot.
Will Doctor take Lyme off the table and treat only Pneumoniae?
Any relevant questions I should ask? Much thanks
I was diagnosed with hypogammaglobulemia back in 2002, before Lyme. I wouldn't say its Lyme caused.
I believe there is a hereditary hypogammaglobulemia, and acquired. Mine was basically a reduction in an IGg subclass, specifically natural killer cells.
It was a fancy way of saying my immune system was shot and I didn't have enough white blood cells to ward off infection, probably due to recurrent infections.
I had EBV, and likely babesia. Mostly it was easier to say I had chronic fatigue.
Don't know what it has to do with Lyme, other than I at times have a weak immune system and maybe that's why Lyme hits me so hard.
Posts: 133 | From North Shore | Registered: Sep 2015
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Neko - Thanks for responding.
Did you get IVIG for your hypogammaglobulemnia ? If so, what did it intial procedure wise ?
I wore black wardrobe for a week to mark my 4 year anniversary of game changing tick bite. Been searching ever since for treatments.
Previous and numeral blood tests never reveled this condition and according to my research, insurance will not cover IVIG for a secondary hypogammaglobulemnia, only inherited.
I was told by my LLMD that I will NEVER get better unless this is addressed.
I m now thinking that maybe IVIG treatment should have been started first and then maybe my immune system would have kicked in and have been able to keep Lyme in check.
Or maybe not. . .
All I know is that I have been deteriating and slowing dying from the inside out. On my 3 rd day of aggressive Lyme, mycoplasma, and fungal treatment. Insurance denied tindamax so I ll work on a remedy for that aspect later.
Immune Doc will see me next week so I ll have more answers. There s just so much second guessing and guilt over the proper way to treat.
Heredity hypogammaglobulemnia certainly fits my profile. I ve had so many sinus, intestal cystitis, bronchitis, and infections all my life. Many antibiotics. And I raved about steroids. They were my all time favorite !
But my IGG levels were always normal. Now they are pathetic. The only thing I DO know is that I have never felt this lousy in all my life. If I wasn't such an narcissist, I would throw myself in front of a train.
Posts: 2977 | From Florida | Registered: Nov 2016
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Bartonella can infect bone marrow and erlochia can infect wbc ...glad you are starting treatment ...ivig has risks if your insueancw will pay for it ? I saw a utoob of a lady chucking her 25000 ivig for 20$of bvt
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
What are the risks with IVIG treatment? One of my docs has suggested this for me too. My numbers are only slightly low. Chances are it will be very difficult to get my insurance to cover as well.
Posts: 2386 | From New England | Registered: Aug 2011
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Bluelyme - I ll look for that YouTube video.
dbpei - I am researching IVIG plasma. I have to be honest though. I failed bio-101 twice and have Neuro Lyme brain so I am not understanding anything but the basics.
Apparently it's a lot safer than previously. Strict donor checklist and filtering and eliminating of viruses and pathogens.
That said, there are still risks and unpleasant side effects.
Just like relationships . . .
Posts: 2977 | From Florida | Registered: Nov 2016
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