posted
Hello, I was bit in May 2012. I have been in treatment for over two years and made little progress and new things keep coming up.
I am currently on iv rocephin,oral rifampin and ursodiol, fluconazole, and liquid nystatin, plus my "normal meds".
Last week the doctor called with a positive EBV test, then Thursday I received another call with a positive Mycoplasma pneumoniae. I also have one MTHFR mutation.
I am getting sicker and sicker and I am still waiting on more test results.
The doctor told me that she thinks I have a systemic candida infection. I see her again on December 8th.
I don't know what to do, my immune system is obviously shot, I take my supplements and good probiotics.
How can I get pneumonia when I was on zithromax at the time, and zithromax is prescribed for pneumonia?
I am thinking I need to stop everything and go back to stage 1. I need to have all the necessary tests run to see what is happening in my body. I have never had any tests for co-infections. I was CDC positive wb.
I think then I need to figure how to build up my immune system.
At this point if I go off all antibiotics will I get better or worse. It's a catch 22, my gut needs to be healthy but the antibiotics mess with it and cause yeast, which is one of my problems.
It's like a puzzle that is missing the corners, you don't know where to start.
I am getting so depressed, I'm tired and I have lost any positive attitude that I had. You get so sick of trying and taking all the medicine.
Posts: 4 | From Brookville | Registered: Oct 2015
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Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Not treating infection is not going to help immune function. Something must be done to directly, assertively address infection. If one way is not working, it may be that all the PARTS are not in place. This is far more than just taking Rx, or even all that should be working.
Support methods are essential but, even then, they may not be enough with MTHFR issues.
And there may be other approaches but they MUST target infection while also offering support to the body.
Trying to "boost" immune system can be very dangerous - please do not try to "boost" any function of the body. Support, modulation is the key.
When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways.
A LL ND should know all about MTHFR issues and be able to design a detoxification / liver / kidney support plan specifically for your body at this point in time.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
Yet, if MTHFR issues are insurmountable, a RIFE machine may be your best approach, along with key support methods.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Herbal Safety considerations & reference books; etc.
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches with links to articles, books, methods . . .
BODY WORK methods / links (and why anyone who works on your spine MUST be LL to the degree they at least know to never suddenly twist neck or spine. Never. Ever. And that we should never be advised to do neck / head / shoulder stands.)
RIFE MACHINE links, too.l -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- About the other chronic stealth infections you mention, it's very common for those with lyme to have various ones such as EBV (usually, treat lyme and EBV will settle down. Although some specific anti-viral herbs can be helpful against EBV such as Olive Leaf Extract).
Other chronic stealth (sneaky, hidden, hard to detect but nonetheless serious) infections you mentioned:
Institute for Molecular Medicine - Garth Nicolson, PhD
He is the premier researcher in the area of chronic stealth mycoplasma infections -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Pulling this from the LL ND thread so you might see it sooner rather than later. I strong suggest considering this approach, considering the gut issues you face.
If not already on a gluten-free diet, that can be very important for gut issues, too.
Rife can be very useful not just for lyme and the typical other tick-borne infections but also some of the other chronic stealth infections such as Cpn and Mycoplasmas, etc.
You might talk to those in area lyme support groups to see if any have used rife. Great links here, too. Good luck. Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
I know how hard it can be. I was in a similar position a few yrs ago. My LLNP had me on 5 different antibiotics and I felt like I was not getting anywhere. I also tested positive for EBV and mycoplasma, but I have since learned this is somewhat of a gray area as many people if pulled from the street would test positive for these as well. Determining if it is an active infection vs. a past one or simply exposure can be tough.
I decided to switch to a different LLNP who while recognizing lyme believed it was time to look at other possible issues. I discovered through testing I was dealing with thyroid, gut and candida issues. All of these have symptoms closely mimicking lyme.
Once I began treating these issues and drastically changing my diet I saw huge differences.
Knowing when to look elsewhere can be helpful. As my new LLNP said the lyme may have ignited flames, resulting in thyroid, gut and candida issues but to continually go after lyme will prove counter productive. Putting out those flames was what helped.
Posts: 1748 | From United States | Registered: Dec 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Along with Ellen's good advice to see where some of the smoldering / flames are coming from so to speak, I had mentioned liver support above but forgot to post this.
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. Helps reduce INFLAMMATION, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I totally support your decision. Stop and start from scratch.
2.5 years on massive doses of abx and not going anywhere, but gaining more infections?
I don't know how you guys can be so strong. I would be probably dead, as I can barely stand one dose of aspirin!
As Ellen said, look somewhere else. The answer to chronic infections is not only kill.
You need killers, but not only, if you see what I mean.
My lyme treatment was mostly support, clean, do other things (teeth, heavy metals), and add a bit of killers. That worked the best.
If I have a cold, only taking killers do not solve even simple colds for me. Or they last too long.
I need antioxidants, acupuncture, vitamins, minerals, propolis, special teas, lemons, some help from magnetic devices to get rid of last symptom (or it may take long for a cold to go).
If you think about lyme and the cocktail of parallel infections, you can bet just taking killers will not solve the problem!
Not even a cold can be easily solved only with 'killers'. There are lyme free people here in Switzerland having colds with symptoms that last months!
And I totally agree: the ONLY thing that can keep lyme dormant and stop the hell of infections is your immune system. It's the ONLY REAL gun we have.
Everything else is secondary.
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
My Dr. is a ILADS LLMD, she just came back from the conference. We know I have yeast as I had bad thrush and female infection. We are treating that. My thyroid has been hurting, they are running more blood tests but she thinks it is the EBV or yeast. I honestly do not know what to think. I am going to talk to her, but $1000.00 a month to just keep getting sicker seems crazy to me. Absolutely nothing has made significant change, I have had maybe 5% improvement in mental recall. I hate this disease.
Posts: 4 | From Brookville | Registered: Oct 2015
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I agree with Keebler. Antibiotics helped me the most. When I took a break I relapsed badly.
Treat yeast, thyroid, and other issues while you take abx.
Good advice, IMO.
Posts: 1954 | From Illinois | Registered: Aug 2007
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