Blood transfusion and antibiotics

[leilajax]

Just out of curiosity:
My blood transfusions are raising a lot of eyebrows in my LLMD's office AND with my endocrinologist.  They seem to believe that not only infection (definitely babesia) was a result, but also autoimmunity (thyroid and adrenal).  My question is that if even Hopkins' infectious disease admits that some infections are missed or not tested in donated blood, than why on Earth would they not automatically give you IV antibiotics after a transfusion?  Why not, just to be on the safe side?  

[leilajax]

Sorry for the delayed "thank you", but June 8th was my 35th birthday and I've been sucking up time with my kids as it's their first week of summer vacay:)

Thanks, Jackie, once again for the continued support and great advice!  Something is working, not sure what, but I am not degenerating as quickly as I was before.  I'm not improving, but I'm not sliding down that slippery slope anymore.

Mojo, I think my doc's theory behind the plaquenil for the Babesia is #1-I requested it, #2-it will not only fight the Babesia, but it could benefit me with my high thyroid antibodies as well.  Here's hoping;).  If not, I will be sure to ask about the malarone.

Rico, your knowledge is amazing!  Thanks for knowing what I need to hear.   My lymph nodes have increased in size more than twofold!  It is insane how large and painful they are.  Where the one axiallary was removed there is 2 more in it's place that are each larger than the 3cm one they removed.  I see the Hopkins intern tomorrow, for the first time since the surgery, and will demand drainage or some sort of relief.  What is drainage tone and the cream you mentioned?  I am game for anything that will take this pressure away!!!  If it wasn't for LDN and Advil cold and sinus, I think I'd still be spending every other day in bed sobbing:(

Thanks again, all of you!  I am starting thyroid medication next week and my parathyroids will be removed sometime over the next few months.  After that, I just have to get my adrenals back on track and my body will be in better condition to give these infections the good fight!

[Ricobord]

It is a known fact that Lyme antibodies can come and go. If the CDC were communicating thoroughly, they'd tell doctors this. Even the study to come up with the CDC interpretation of the Western Blot tested patients four times, and if a patient met the CDC criteria even one of those four times, then the test criteria was considered good for that patient.  But they don't actually tell anyone that their own data shows that a Lyme patient could test "negative" three out of four times.  Doctors only hear the 90-something % accuracy rate, which is incredibly misleading, and think false negatives are almost impossible.

Your antibodies can change whether you're getting treatment or not.  When Borrelia is under attack by either the immune system or antibiotics, it can fold in on itself to hide the proteins under attack.  (Antibodies are formed to attack the foreign proteins on the surface of the bacteria. It is those antibodies that are measured on the WB to form "bands.")  Borrelia can also lose its' cell wall, becoming almost invisible to the immune system.  So, for example, when the immune system doesn't see protein 23 much anymore, it stops making that antibody. If an antibody goes away, it sounds like the bacteria are trying to dodge the immune system and abx.

Inversely, some late stage patients show new bands after treatment starts, after some dead bacteria have hit the blood stream, alerting the immune system to their presence.  I've heard of people going from negatives or really weak positives to full CDC positive many months into their treatment.  Showing lots of antibodies is a good thing... it means the immune system is fighting back.

Band 18 is definitely Lyme specific. But the CDC protocol only looks at it in the IgG portion of the WB.  I showed it only on the IgM, where the CDC ignores it.  That makes no sense, as an IgG antibody is always preceeded by it's IgM counterpart.  

Re: the meds, I have been on up to 3 or 4 abx at a time.  I took Plaquenil, too, which is not an antibiotic. It makes the body more alkaline, which makes it easier for intracellular antibiotics to penetrate cell walls to get at the bacteria.  Some think of it as an arthritis drug, as it often alleviates pain in connective tissue.  I am guessing this is related to the body becoming more alkaline.  When the Ph balance is good, the immune system works better, too.

I can't take Bactrim as I'm allergic to sulfa drugs. But I did take plaquenil with Biaxin.  Plaquenil combined with an intracellular abx is considered a good treatment for Lyme by LLMDs.

I'm glad you're finally seeing some progress!  I'm especially glad you to to your LLMD and are getting treatment.  Are you still experiencing any herxing?  Any of those lymphatic issues getting better?  Has your doc mentioned either Drainage Tone or Iteres Cream as possible homeopathic remedies?

[cave76]

According to Igenex:

" It must also be kept in mind that these antibody tests are not static; they change over time. A patient negative in the Western blot may seroconvert to a positive pattern with treatment."

And of course, vice versa.

[JackieCalifornia]

Using my handy printout from the truthaboutlyme website, which I keep strategically taped to the wall here, here are the meanings they give for each of your positive or indeterminate bands:

Looking pretty Lyme-like to me (but I'm no doc):  
=============================================
18+       highly specific to Lyme -- some docs say IF this band is even the only positive you get, then it screams Lyme

23-25-
28-
30-
31-
34-

39 IND     major protein of Lyme flagellin; specific for Lyme (that is, nothing but Lyme gives a positive on 39.  

41++       flagellin of all spiral-shaped bacteria (incl. Lyme, so may be Lyme, may not be)

45-

58+         unknown but may be a Lyme protein

66-

83-93 IND  specific antigen for Lyme, prob. a cytoplasmic [cell] membrane
==========================================
'Specific' means that *only Lyme* would give a positive on that band.

IND mean 'indeterminate', so not clear whether it's positive or negative, but a Lyme doc would likely say that IND means 'not negative' -- so a weak positive in effect -- something is triggering that band to light up at least a bit, and that 'something' would only be Lyme, given which bands you have IND on.
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You ask, "What's up with my previously pos band 23 now being negative?"

These tests are looking for antibodies your immune system makes to kill the Lyme bacteria.  That band 23 is now clear may mean that the treatment is working and so that antibody is no longer needed and has been used up and so doesn't show up on the test result, or that the test was a bit off.  I'd take it as a small bit of good news, that the tests are moving in the right direction, sloooowly, moving.  This is good!  Ask your doc at your next appointment -- I can't imagine it's bad news of any kind, and is likely good news!
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About the hematologist, I wouldn't worry about it.  They can have a HUGE blind spot when it comes to Lyme.  I'd rely on the LLMDs take on the situation.  If you are concerned, then think about taking a short list of the gripes the hematologist made, just as you have them written up above, and ask your Lyme doc at your next appointment if there's anything there to be concerned about, bec. it was what the hematologist said and you want to understand.  I think that is a very reasonable question.  If it's a long time till your next appointment or it's worrying you a lot, then consider sending a note to the Lyme doc's office and pose the same question.  Can't hurt.  
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About the number of meds you are taking, Lyme is so much on the cutting edge of diagnosis and treatment, esp. considering the interplay of various co-infections, that there is not one single approach to it.  It's not settled what meds are best in each case ... just not that simple.  

It is a reasonable question to ask your doc, tho:  'Doc, is it usual to take 4 abx at the same time?  What is the purpose of each one?'  I bet the doc can tell you pretty quickly why each one may be useful ... and it may switch yet again as your infections respond (or don't) to whatever you are then taking.  It's a moving target. Like laser tag.  :)

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About thyroid, it's well known that Lyme messes with thyroid function.  I was put on thyroid supplements when I was in treatment for Lyme, and it helped, and then all of a sudden as treatment was kicking in, my thyroid roared back to life!  I was up ALL night one night, unable to sleep, totally buzzed, a bit wigged out by it.  My doc told me to stop them, or maybe taper them down (I forget now), and I've never needed them again.  Think of it as a crutch for an ailing thyroid ... and at some point you probably won't need them anymore, but wait for the doc to say when that is.
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So ... speaking as non-doc myself, it looks like you're headed in the right direction.  Don't be surprised if the positive/negative readings on the bands switch around a bit on future tests -- Mother Nature seldom works in a straight line, y'know?

You go, girl!

[mojogal]

I swear by Malarone to treat the Babs. It kicked my butt so badly, that within a week of having a blood test checking for anemia and not having it, I became so anemic that  I wound up in the hospital with big time anemia.

[mojogal]

Jackie, you know I have Lyme brain :)

It was a common IV abx but I can't think of the name of it.

I believe it was the transfusion itself that got rid of Babs. There was a definite change after the transfusions were done.

[leilajax]

Btw,  LLMD now has me on azithromiacin, doxy, bactrim, and plaquenil!  Does that seem like a giant combo?  She upped my plaquenil dose, too, stating that she hopes it will treat the babesia.  She said if I show no signs of improvement in another month she may put me on IV abx.

[leilajax]

You are very lucky indeed!  Had I've known any of this was possible I would've demanded IV abx!  I will try to tame my anger and take it as knowledge to educate my babies and keep them healthy!

[leilajax]

Rico:  very interesting!  I will def. ask Hopkins next week as they want to see me again.  That's a very good question about antibody production due to transfusion infection versus tick bite!  As far as the overuse of abx, I can see their argument if I had chronic sinus infections or something of that matter, but the odds of overusing abx due to transfusions... well, that would just be silly if that were their only argument.  Shame on them!

Jackie:  you know, I actually saw a hematologist back when they had me all freaked out over cancer (lymphoma).  Wouldn't you know he just asked me more questions than offering answers:(. "Why are your thyroid antibodies so high?"  "What did your dr day about your high blood calcium?"  "Your lymph nodes just feel big bc your so skinny, don't you think?"  Ugh!!!  He ordered a ct scan to appease me and when it came back normal I was told he wasn't going to see me anymore.  Come to find out that I have Hashimoto's, primary hyperparathyroidism, and my nodes are gigantic at 3 cm for reactive nodes (not bc I'm skinny).  Sorry, hematologist is a sore subject for me:/
I'm glad you posted though:)
I've been wanting to ask you about my Igenex IGM results:
18+
23-25-
28-
30-
31-
34-
39IND
41++
45-
58+
66-
83-93IND
Babesia duncani IGM positive
What's up with my previously pos band 23 now being negative?

[JackieCalifornia]

Whoa!  That's amazing!  What abx did they use, out of curiosity?

[mojogal]

I was hospitalized in October from anemia from babs and I luckily  got a Lyme aware hematologist. I needed to have a transfusion and my Dr, knowing I had Lyme, Babs and Bart's, gave me an IV abx after the transfusion. The other interesting thing was that after my transfusion, my Babs was gone.

[JackieCalifornia]

Not to increase the medical bills, but would a hematologist have some useful approaches to this situation?

[Ricobord]

You pose an excellent question.  There is some dispute about Lyme being acquired through blood transfusions, but there are certainly case reports out there.  It is definitely known that Babesia can be acquired through a blood transfusion. I imagine there are quite a few othera. I guess that docs believe that if you do get Babesia from a transfusion, then they can just treat you and you'll be fine.

The cost of screening blood for everything is high, so they rely on a questionnaire of history and any medical symptoms in donors.  But this is based on a really bad assumption that if someone isn't showing any symptoms, they probably aren't carrying anything.  Which doesn't make sense, as it's well known to ID docs that there are asymptomatic carriers of a number of diseases.  I think it's just part of the risk of transfusions, which save a lot of lives.

I wonder if health officials don't want to give every transfusion recipient antibiotics because they think if they "over use" antibiotics, it will perpetuate the drug resistant bugs.  They think that withholding antibiotics unless they're absolutely necessary will slow down the march of drug resistance.  And yet, all along, it could be the overwhelming use of abx in animals that's actually causing much of the resistance.  

The idea of skimping on abx for patients is counterproductive.  The trend of refusing antibiotics without positive test results ends us in disaster for some people. Perhaps in the big picture world of public health, it's better to lose a few people to untreated infections than to risk a pandemic of an untreatable infection.  It seems to me that there are times when the public health policy is contrary to the best decision for an individual patient.

There are theories gaining steam out there that autoimmunity is really a response to a chronic infection... that the immune system is unsuccessfully attacking an intracellular pathogen infecting certain types of cells in the body.  The type of cell being attacked defines the disease.  For MS, it's myelin.  For Sjogren's, it's moisture producing cells. For Hashimoto's, it's the thyroid.  There are researchers working to locate possible pathogens, but no success so far, as immune dysfunction is part of the equation.  If autoimmunity is triggered by an infection, then it's reasonable to think it could be transferred via blood, but only to someone predisposed to it.

Here's hoping that the signs of autoimmunity that you're showing go away with proper Lyme treatment!  Given all the reports about Lymies being misdiagnosed with autoimmunity, I think your odds are pretty good.

What did the JH docs say about Babesia?  If you see the JH docs again, ask if antibody production works exactly the same when a Lyme infection is acquired through a tick bite versus through a transfusion.  I'd be curious to know if there's any data on that at all, as so much has been studied about transmission from a tick into the skin. I wouldn't be surprised if your antibody production was different, and that could effect antibody test results.