Topic: Husband in the ER being Admitted for Infective Endocarditis
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
So glad to hear that you are home. I'd get copies of all my medical records from there and any tests that were done as well so that you can give the test results to your LLMD.
Disgraceful behavior on the part of the ID. To refuse to talk to your doctor because she doesn't agree with your treatment is not professional. Some doctors have such a big ego that they simply are not capable of putting the patients well being first.
So sorry you and your wife had to experience such distasteful behavior. Your wife was so kind to keep us updated! She is a real sweetheart and such a trooper.
My thoughts and prayers are with you for a quick recovery.
Take care, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Abxnomore
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posted
Glad to hear you are home and away from the hospital know nothing DUCKS!
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
To All:
UPDATE:
This is Katie, Roys wife, Roy wasnt feeling any
better when he got home and was not satisfied
with what the doctors said at out local
hospital, so we called his Lyme doctor and were
told to talk him to a different hospital when he
can see Roy. It is about 30/40 minutes away from
home so I am truly missing my husband and I know
our son is too!
Its 1:04am and I just got home. He was still in
the ER when I left, but he just told me that he
is being admitted.
I am glad to know he is with a good hospital and
in the care of his doctor so hopefully we will
have an idea on what is causing this for my
husband and how to fix it!
*** We just miss him. Since he has been
diagnosed, 2 years ago, I can say that we havent
spent more than a day apart.
Thank you so much for all the support & keeping
us in your prayers, we truly appreciate it.
I will update more as soon as I get more info.
Hugs, Katie
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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bettyg
Unregistered
posted
wow katie!
leaving one hospital and taking him to ANOTHER in same evening!! whew...
nice seeing roy post himself, and so GLAD YOU CALLED HIS LLMD for his guidance and advise.
MORE PRAYERS headed to each of you..
mitral valve is nothing to ignore.
my late dad had 2 mitral valve replacements with PIG valve. 1st lasted 10 years and 2nd 3-4 yrs. until his death.
he had also UNDIAGNOSED LYME FOR 80 YEARS.
so whatever happens, with roy being so young; he has a much better chance of overcoming these obstacles than my late dad did.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Well bless your heart.
Thank you for updating us. I am sorry you are doing so much running... but just so you know....
Hubby praises you as if the sun rises and sets with you and like you walk on water.. and worries about you so... and your little one too. And we can surely see why. You are tops.
If you ever decide to dump him....
And when he reads this he is LAUGHING.... I can't hear you laughing.... LOUDER NOW!!!!
You can stay here and be nice to me!!!!
If we can do anything for you... please let us know. Heck we feel like we already know you and we hold you dear too.
You are part of this big crazy family... so do share and do let us know if you need anything.
OK?
Hope you get some rest... and when you are up to it.. we'd love to hear from you!!!
Glad you went to the 2nd hospital -- I was going to suggest you get a 2nd opinion from a LLMD cardiologist.
One supplement you might want to think about adding is CoQ10 -- it helps strengthen the heart and is good for the brain as well. Kind of expensive, but worth it. The ubiquinol form is best. 300 or 400 mg daily is probably an adequate dose although it may need to be even higher in Roy's case. Many alternative docs prescribe this for congestive heart failure and other less serious heart issues.
Hubby has had a mitral valve prolapse probably from birth (diagnosed at age 3 or 4). He is now 55 and has had Lyme and coinfections for 8 years. Has been taking the CoQ10 for over 7 years and his last echo actually showed some minor improvement in heart function -- his regurgitation was less than in the past. The only explanation for this is the CoQ10.
Best wishes.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Katie,
I'm glad that Roy and you are fighting for him. I know a mom who took her kid to the ER with 104 degree temp after he'd had a hernia repair surgery. They gave him some Tylenol and sent him home.
She knew something was really wrong. In the am, she went to her pedi's office and waited until they opened, pedi took one look at him and called for an Ambulance to take him to a hospital in a large city 1.5 hours away.
He ended up having Toxic Shock Syndrome. He almost died (they think a gauze pad was left in him during the surgery) and would have if mom didn't have intuition.
You are a WONDERFUL wife for Roy and I can tell you guys love each other so much and have so much love for your little boy.
Thank you for updating us, I am sure you are so exhausted. I hope you have someone nearby to help take care of your son so you can rest too.
Some hospitals are incompetent as Astriapage can attest! I hope this one can do more for him than the other. It's great that his LLMD will be there to make sure he gets the care that he needs =)
posted
Katie and Roy.. thanks for keeping us posted.
Smart move going to the other hospital.
I know the hospital he was in, I have had a few horrible experiences there.
Now his lyme txing doc will be there for him.
Let me know how I can help.
Hugs & Prayers for all 3 of you being sent.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
To All,
This is Roy,
I am not feeling good for the past 7days.
Like my wife had mentioned I went to another hospital for my heart problem.
I got there real late and the problems started....
I was held in the ER with extreme chest pains, shortness of breath, left side going numb,coughing,headaches,dizziness and nausea.
I was held in the ER for 9 hours. I was first told that I was going to be admitted, they just needed a room (they were busy).
I thought I was finally going to get some help with my Mitral Valve.
To make a long story short one of my Lyme Doc's partners saw me. My Lyme doc was on vacation due to "Ash Wedneseday".
His partner asked me how I was feeling. This was at 7:30am , after having no sleep.
I told him I am really not feeling well I was held in the ER for 9 hours without a room where I could sleep and that my heart is really hurting.
He told me my blood work looked fine and he was discharging me. I couldn't believe it. The best part was that he had called my Lyme Doc and asked him what to do.....
Nobody wanted to deal with me. I feel really sick and its getting worse.
I bet if I was 20 years older they would have been more concerned.
I just don't know what to do.... My Mitral Valve is in bad shape and my bloodwork for an infection was highly elevated.
BUT both hospitals discharged me saying it was the Lyme.
I told them I know Lyme can cause heart problems and thats why I'm concerned. It already has affected my brain and now my heart is extremely weak at the age of 23.
Well I am off to the toilet bowl to toss my cookies.......
Astriapage... seems like my problem is similar to yours.
It seems like anything I read about it ISN'T good.
So sorry you are getting the run around. Hubby suggested that a chest CT with contrast nmight be useful. It could find a clot if there is one -- more definitive than an ultrasound or even an echo or stress test. This can be done on an out patient basis. I would call your LLMD or PCP tonight or first thing in the morning. Don't give up on getting a more definitive diagnosis.
Make sure you get copies of all the bloodwork done in both hospitals.
Are you taking any enzymes such as Wobenzyme or Vitalzym or nattokinase or lumbrokinase or something like that?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
hey,
Just curious.... Did anyone have any discomfort in the chest area with MVR?
I strongly feel that I have infected endocarditis.
I also feel that 2 years ago when my doc found the heart murmur and palpatations is when my heart started getting weak.
I did notice that the ER and staff were more concerned about the elderly, which I can understand, but it took away from my treatment.
I am going to have a long talk with my doc, maybe not see him anymore, thats how ****ed I am.
Very, very concerned. Seems like they thrive on just lab work. I also heard that you can have a false-negative lab for Endocarditis.....
Next step....Unknown
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hang in there till you talk to your doctor!
Tell the office you've spent X number of days in the hospital.. two hospitals.. and still have no answers and are very concerned... and you want to talk to him/her today!
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
TO LIFE:
Zithro,Levaquin, and Tindamax
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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TO LIFE
Unregistered
posted
Hi Kreynolds,
Is your Lyme MD willing to right a note to Cardio about heart infection? Like, all they have to write possiable heart infection for Cardio. for you.
Then the Cardio will have to dot his i's and cross his t's. Like even though my heart infection was due to Bart. and Lyme mainstream medicine DX me with Staph.
Do you have the echo results? Or prior ones has well so they can compare?
Do you have a teaching hospital near you?
If you do have an infection in the heart you need the A bomb of antibiotics. Rocephin will just get into their a little.
I would really like to talk to you-what have you been through with your heart.
You talk about the abx, and my cardio does know what to put me on anymore. He knows Doxy is not even worth making me sicker at this point.
I have been on 9 weeks of IV Vancomycin, Caspofungin, Levaquin and Rocephin and it worked for about a month, and I have relapsed so bad!
I was not told that I had the Diastolic Dysfunction-I will ask though!
Please PM with your experience-I am so passionate about this, and want to talk to everyone who is affected.
Posts: 303 | From Jekyll Island, GA | Registered: Sep 2008
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posted
Sure hope you (Katie&Roy)get treated better where you are now! How in the *ell do these drs and hospitols get away with discharging someone this sick? The day is coming when we will have to have our lawyers deal with our medical proffessionals !!!!!
Posts: 97 | From West Chester ,Pa. | Registered: Aug 2006
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Thanks for the update. I really hope Roy gets an answer today. Hang in there!
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
To All:
UPDATE:
I heard from my husband a little while ago. His
Lyme doc came to see him and a cardiologist.
The cardiologist is in the process of sending my
husband for a new Echocardiogram along with
running all new test on my husband.
Also, my husband had a cardiac work-up about a
year and a half ago, so the cardiologist is
requesting the Echocardiogram from that work-up
to compair it to the one she is doing to see
the difference of his Mitral Valve. She said
that if she sees a difference she will be
doing valve replacement surgery.
Well that is all for now, so as soon as I get
more info, I will update everyone.
Hugs, Katie
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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TO LIFE
Unregistered
posted
Dear Katie,
Let's hope for the best.
If I was you I would get your mate's recent Echo results, In other words ask for a copy. Please post it.
Is he on a monitor? When I have had to go to the hospital, I always check where the code blue button is in the room. Don't say anything just look for it.
I am just trying to prepare you. Like I believe in hopeing for the best, but I have to use wisdom to plan for the worst.
You are in a rough storm right now, as hard as it is you need to stay calm.
Is your husband on Valium? Remember the heart is a muscle, I have found valium relaxes the heart, to stop more heart damage.
GET THE RECENT ECHO RESULTS.
A Cardio does not do heart surgery a vascular surgeon does. They can make big money, and doctors can make money and then they can make money.
Please post Echo results, my Echo is not Kosher but I am still here.
Feel free to PM them to me if your not comfortable posting them.
posted
Katie, thanks for the update. Praying for all of you.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
To Life:
My husband filled out a Medical Release form the
other day from our local hospital to be able to
get all of his test results etc, but i forgot to
make sure I was on as authorized to pick them up.
So, I am waiting for my husband to call me back
to ask him to just write down that I can pick
them up and then ask the nurse at the hositpal
that he is in now to fax it to the other
hosiptal.
As far as I know, yes he is on a monitor.
What is the blue botton? is it an emergency
button?
Yes, my husband takes Valium. Its that good?
As soon as I am able to get the Echo results I
will post them!
Hugs, Katie
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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TO LIFE
Unregistered
posted
Dear Katie,
I am sure by now the hospital has all the ECHO records. A picture is worth a thousand words. Ask for a copy of the recent one?
Get all of the ECHO results if you can. The recents one's are in his file from this morning. The old one's as well, having something faxed does not take alot of time. They should give them to you.
The code blue button is hidden, look for it.
Vascular Surgeons can make big money when it might not be necessary. Like an extra 40,000 in their bank.
Yes, make sure he is on valium the heart is a muscle. It will help relax it.
Hang in their. God will give you the strength his grace is able. Roz
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
To Life:
I am going to the hospital where my husband was earlier this week to get his records which include the Echo results.
You mentioned a picture. Are there pictures of his heart?
~Katie
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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TO LIFE
Unregistered
posted
Dear Katie,
An Echo is like an ultrasound, like when you are pregant they kind of look like that. Their should also be a written report with each Echo.
Yes,valium will help relax the heart muscles.
Is he on IV antibiotics where they are covering gram neg- and gram postive????
Like with me, I was on Gent. IV, which will cover gram neg infection, with something else for a few weeks.
Then I was switched to Vanco which is gram positive and something else. I am allergic to Penicillin, if your husband isn't that is very much in his favor. They can use at least 5 different antibiotics.
I believe it's hospital policy for Infectious Disease to see him in a 24 hour period at least in California.
Don't worry if they don't DX him with Lyme and Co. the main thing is that he gets the antibiotics and all the corners are covered.
How is his lungs? The heart and lungs go together. The die off with the strong antibiotics is rough. Have him spit out ever toxin in a cup or something, it very important to keep his lungs clear.
Code blue button is for emergency, just check for where it is in his room just to be on the safe side.
You are doing well. You have a very wise head on young shoulders. Much Love, Roz
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Dear Katie, Thank you for keeping us updated.
I am relieved to hear that Roy is finally getting the care and attention that he needs. My heart goes out to you... I will continue to keep your family in my thoughts and prayers.
God bless you:)
Posts: 5237 | From here | Registered: Nov 2007
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Please update us as soon as possible-and wheter or not they will do the TEE do see the exact damage before they decide to do surgery.
I am relieved to see that you have a cardio who is already talking surgery. It was mentioned to me as a last ditch effort.
I know some people might not agree with me for saying that, but you do not understand this until you have sat in a hospital for 7 hours a day, 7 days a week for 6 weeks, only to turn out you had to have open-heart surgery anyway.
This was so hard on my family to take me back and forth to the hospital-I did not have insurance, and could not have a home health nurse-so it was only option.
To Life:
How much heart damage are you living with? What valve was affected? I am very anxious to talk to you.
Prayers and Hugs-Astria
Posts: 303 | From Jekyll Island, GA | Registered: Sep 2008
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
To All:
UPDATE:
Sorry I havent updated sooner, yesterday was
crazy...
My husband was in testing all day yesterday.
They did blood cultures, x-ray, cat scan, EKG,
echo cardiogram, pulminary functions test etc.
The only thing that hasnt been done is the TEE
test and that will probably be done on Monday.
My husband is waiting for the results from his
Echo yesterday. He said that he is feeling very
tired and his legs are very weak along with he
can not seem to eat much. He said he is nauseous
there for he doesnt have much of an appitite.
Also, his Lyme doctor put him on IV Levaquin and
has been having my husband do a nebulizer
treatment because he thinks my husband may have
asthma, but my husband says its making his heart
race so he wants to stop.
So, we are just waiting on the cardiologist to
tell us the next step and as soon as I find out
I will let you all know.
Thank you again to all!
Hugs, Katie
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
To All:
UPDATE:
The cardiologist reviewed the Echo results &
decided that his mitral valve does not need
replacement.
I spoke with him Lyme doctor and he is
determinded to get to the bottom of this chest
pain, nausea, weakness, numbness etc. He is
doing a 24 hour unrinalysis and will go from
there.
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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posted
Great thing about not having to be replaced!!!
Yipeeeee!!!!!
Hope they will get to the bottom of his misery!
Posts: 303 | From Jekyll Island, GA | Registered: Sep 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks for keeping us updated.
I'm so glad to hear that he doesn't need the valve replaced!!
Wow, when I looked at the number of tests that he had I can see why he's so tired. I hope they get this figured out soon and you guys can get some much needed rest.
Prayers and hugs to you guys.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
All my hopes to you & your husband for a quick recovery!
With love...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
To All:
UPDATE:
My husbands Echo results came back from the
current hospital... The results came back
perfectly fine, showing no mitral valve
regurgitation.
The Echo results from the hospital where he was
last week says that my husband has mild/moderate
mitral valve regurgitation.
We are so confused on why the one hospital's
results, which I have, is saying yes, he has a
mitral valve regurgitation, but the other
results are saying there isnt a mitral valve
issue.
Does anyone know what this means or any advice?
Unfortuanly, now that the most recent Echo came
back fine, the cardiologist doesnt feel a TEE
test in nessacery. She says my husbands heart is
fine!
Now being his Echo came back fine there has been
a discussion about putting in a Porta-Cath. I am
concerned because what if there truly is a
problem with his heart?
They did a pulminary funtions test which came
back fine as well.
My husbands Lyme doctor is sending him for an
upper-endoscopy tomorrow.
Its starting to be confusing on what is or isnt
the problem.
The only good thing is that his Lyme doctor
says he is not going to release my husband until
he gets to the bottom of all his problems.
My husband was on IV ABX for almost 8 months.
We've heard that some people, when they come off
of long term ABX, they start to feel really
really bad. Is this true?
Also, if it is true can it cause horrible
shooting heart pains, nausea, sweats, high blood
pressure, fevers, weakness, tiredness,
irritability etc?
Sorry for all the questions and not updating
sooner.
Thank you all again for keeping my husband in
your prayers!
Hugs, Katie
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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