posted
Hi, Sam! I'm so very sorry you are still suffering so much!!!
Does anyone know which meds help brucella? I'd place bets on that one for now.
Random info on Vit D:
Vitamin D (see Tincup's post above) DEPLETES magnesium .. Big time!! I got off of it last year or so and then when I got really sick with the flu a yr ago, I added it back in. It nearly killed me, I swear! Gave me heart pain, etc.
I plan to take it ONCE IN AWHILE just to get a little in. The BEST way is to take cod liver oil, but I don't tolerate any of them.
Back to Sam ...
Dr C is extremely organized .. busy, but perhaps he can help you. He's very dedicated and will spend plenty of quality time with you. Get a chair you can lean back in or just lie down in the exam room...whatever works. He will not think you are weird because you have to lie down.
What I liked best about him is how he would listen to and consider anything and everything. He CARES and will do his best to help you. The only downside is getting IV treatment across state lines. That can be an issue. You'd have to have a willing local doctor/hospital if you needed IV.
Any chance you can see another cardiologist?
PRAYING FOR YOU!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Thank yall so much for the prayers. They mean so much, and I know God is the only one who can save me! I believe that with all my heart.
Jordana, yeah you're probably right. He also said that I'm "highly unusual" and that he's never had a patient like me in 11 years I treating Lyme, so I just wonder if he's gonna be able to help me in the end.
Lymetoo, Brucella is treated with a lot of the same stuff as Bart (just heavier), but I think streptomycin and gentamycin are usually used too for a couple of weeks. With Brucella you're supposed to take 3 to 4 Bactrim DS per day.
Thank you for the info about Dr. C! I tried to PM you to ask about him but you're box was full. That's really Greg to hear that he listens and cares. I really hate to hear he's busy, though, but I guess most of the good ones are.
I've thought about seeing another cardiologist. Just not sure which direction to head first though... So many options. And so little ability to put out effort.
I did have two spots show up in a kidney in a PET scan. Now I gotta have an mri. Ugh. Hope I don't have renal cancer. I don't think I do but my primary doc is concerned about the spots.
Thank you so much everyone. Posts: 748 | From Texas | Registered: Feb 2015
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Sam if you are up for one more suggestion, I thought of you when reading an article on CPN. Here is the part that jumped out at me:
"Cardiac infection: Cpn infects the cardiac system, and is a major culprit being investigated as a source of cardiac disease. Parasitization of cardiac muscle by Chlamydia pneumoniae would reduce heart efficiency and contribute significantly to fatigue. A recent paper found evidence of Cpn throughout myocardium, the heart muscle wall. These infected muscles would presumably be functioning at lower efficiency because of ATP depletion, resulting in a chronic cardiac insufficiency. This is consistent with findings of cardiac insufficiency in CFS patients (see Peckerman).13,14"
Here is the link to the full article:http://www.prohealth.com/library/showarticle.cfm?libid=12763. Keebler posted it a while back.
and here is a GREAT website with info on cpn protocols: www.cpnhelp.org in case you want to read more.
I personally have CPN. It emerged - or I caught it - years into battle with Lyme and quickly became number 1 issue. But it took a few months to dx it -- my great LLMD finally thought to test for it after I could not get over bronchitis. It's a tenacious bug but I'm doing a lot better now with treatment.
Couldn't hurt to test for it. In my (limited) experience, the test is a lot more reliable than the testing for Lyme.
This isn't a co-infection that you hear a lot about for some reason. I think it's probably waaay under-diagnosed and under-treated. Thankfully, my LLMD thought to test for it and Keebler alerted me to the cpnhelp website where I got the tx protocols from. Trying to spread the word to others now.
Do you ever feel like you give your LLMD a lot to talk about at conferences and in articles? Yeah, that would be me. ; )
Posts: 1737 | From Virginia | Registered: Aug 2011
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I went through some test results, and the LLMD I saw in Texas is the only one who ever tested me for CPN. It was positive. He also tested me for a ton of stuff that others never have tested me for (including Brucella which was also positive). And Texas docs are supposedly not that great... Makes me rethink this guy a lot actually.
Dr. J in MD told me CPN was nothing to worry about I recall. He said everyone tests positive for it. I thought that sounded kinda strange when he said that.,,
Maybe I do need to explore CPN. Thanks for the tip!
Posts: 748 | From Texas | Registered: Feb 2015
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Was going through my husbands blood work tests ordered by his Dr. and he has six tests for CPN...I couldn't understand why...now I see.
My husband suffered a heart attack and I took him to my daughter's LLMD and he got a diagnosis of Lyme and a con-infection, for starters.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
I didn't know it could affect the heart until now either. Which is really interesting because I had a big CPN flare this summer and had a TON of palpitations. Docs chalked those up to side effects of all the inhalers I was on (also due to CPN) but now I wonder if it was all the CPN.
Not sure why CPN doesn't get more respect! Hard to see how a LLMD could say it's nothing to worry about. It has definitely been something to worry about for me.
Also -- my doctor can see via my tests when my cpn is improving because my antibodies are going down, and that has matched how I feel. So I'm scratching my head over the "everyone tests positive" comment.
Fortunately, everything you need to look into this is on that cpnhelp website.
Posts: 1737 | From Virginia | Registered: Aug 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Regarding the "everyone tests positive" comment, Burrascano says that there are illnesses virtually everyone tests positive for, so you have to do PCR testing to find out if you actually have an active infection or just have a "positive" test result from past exposure.
Mycoplasma and viruses are 2 examples. Here is the quote from Burrascano:
"Frequent exposures to Mycoplasmas are common, resulting in a high prevalence of seropositivity, so the best way to confirm active infection is by PCR.
Chronic viral infections may be active in the chronic patient, due to their weakened immune response. PCR testing, and not serologies, should be used for diagnosis. Commonly seen viruses include HHV-6, CMV, and EBV." (page 5)
So, perhaps the doctor is just saying that being positive on an antibody blood test is nothing.
To find out if you really have a current infection, you have to do PCR testing, per Burrascano.
Posts: 9931 | From Maryland | Registered: Dec 2007
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Much as I admire Burrascano, there are other docs who are better versed in CPN. Here is some info on testing and diagnosis specific to CPN:
bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Sam you mentioned bactrim and vasculitis...i believe that is what happened to me as well. I didnt know i had lyme took it for ear infection and all hell broke loose...i thought it was allergic reaction.
Rhuemy said it looks like vasculitis, i have mpa like wasting, but thank god didnt treat with steriods...so here is my theory the rmsf bb and yeah i have cpn were all happy munching away when blammo we spoiled their party
.they took off to soft tissues outside of blood stream but shed their osp drilling thru our cappilaries or hid in the endothelial lining. We do have vasculitis and cant take roids so i am looking into iv curcumin to calm the cytokine storm.the spiros may have ran to the outside of heart
where saturation is low.i have branch block that wasnt there. I dont want orals to drive it further in and am confused and hurting like you. See if anyone does iv curcumin at alt infusion place. Best of luck, god will heal you either way..
the cpn angle maybbe worth looking at too i am showing this as past infection but it is intercellular quite the doozy ..8snit the same as mycoplasm pnumoniae?
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