bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Sometimes I wonder if I am treating too much.
Here is why: -Back in 2010 when I was first diagnosed, I made it to 95% and nearly recovered with only a few, small nagging symptoms left. (mild tinnitus, mild eye floaters, mild calf twitching.)
-I had large flares in 2011 and 2012 when going after Babesia, Bartonella, and other Parasites. I think these were herxes? But could they have been side effects? Hmmmm...
-I've typically been able to handle my breaks well and would take one or two abx breaks a year in 2010-2012. The longest break I took was for 5 weeks in early 2012. The longer I was off meds, the better I felt. I mean nearly normal.
-I had a big relapse at the end of 2015. I restarted ABX in mid 2015 due to suspected prostatitis. (In reality I had structural problems that put my pelvic floor muscles into spasm.) While I was on ABX, I had a huge relapse of old symptoms after being on them for 3-4 months. This happened "out of nowhere."
-The flare I had at the end of 2015 had a lot of new symptoms that I hadn't had before. Sinus pressure, PND, full ears, head pressure. Along with a flare in my old Lyme symptoms.
-I made great progress in early 2016 with an Applied Kinesiologist. The first 8 weeks that I treated with her I was on no antimicrobials. We just treated yeast/fungus, and cleaned up my diet. I felt great. Night sweats STOPPED for first time ever. Wow.
-I felt worse starting antimicrobials again in late 2016. Large flares of the "2015/2016 symptoms".
-I made good progress in Feb 2017 when starting MC-Bab-2 and had more and more "good days." This makes me think Babs is in the mix and I've been ramping this up for the past 18 months.
-Except in September I started feeling crappy again after a good year and a half. with the same "2015/2016 Problem symptoms" of worse eye floaters, worse tinnitus, woozy/spacey, top of head pressure, sinus issues, PND, etc, etc. Also came out of nowhere while on treatment that made me feel good for 18 months.
-I used to test VERY POSITIVE for Lyme on my IgM on both Igenex and Quest western blots. Now I am negative across the board.
-I used to test positive for Bart (IND), Brucella (IND), and Babesia Dunanci (IND), as well as CPN and Mycoplasma Pneumonia. Now all are negative except for mild IgG on Myco PNeumonia.
-However...I test VERY positive for mycotoxins in my urine. Like 7-9x what is "normal." And I have low Vitamin D.
I dunno...sometimes it seems like I'm chasing ghosts. Perhaps my symptoms now are primarily due to toxic gut, gut dysbiosis, mold/fungus/yeast and less due to "bugs" from Lyme and Co.
I did really well in 2012 when I took a drug holiday, and also in 2016.
Dr A posted a good case study of someone in a similar situation. I'll post it below as an example. Perhaps I need to go this route?
Apologies for the length of this.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Here is a link and text to a good case study from Dr. A about a patient who came to him while on treatment for Lyme and co. And it was really mold/fungus due to long term abx etc.
45-year-old male transferring into my practice on antibiotic treatment. He has been treated for Lyme with multiple antibiotics for 2 years. His current regiment for the last three months was Bicillin LA 1.2 million units’ 2-x per week with Zithromax 500 mg daily and Flagyl 250 mg 2-x per day pulsed dose. He had little change in his symptom over the last 6 months.
Initial interview:
Chief Complaint: Restless, irritable, difficulty sleeping and low energy.
Subjective (Patient’s reports): Diarrhea, gas and bloating. anal itch, hemorrhoids and acid reflex. Any food induces diarrhea. Moderate to severe depression that is worse when abdominal symptoms are aggravated. Generalized muscle aching worse in the back, neck and shoulders. Large muscle fasiculations, random and fleeting, worse in the torso, thighs and shoulders. Pain in the whole hands and joints bilateral.
Review of Systems (ROS) upon questioning patient: Sinus congestion, difficulty breathing through stuffy nose. Plugged Eustachian tubes with difficulty hearing. Mild sore throat. Mild head ache
Reactive to mold exposure, feels dizzy, spacey with headache within minutes of contact.
Assessment: How many of his symptoms are still related to Lyme and the co-infection vs. chronic mold infections? What parts of his symptoms are related to drug side effects, toxicity response vs. Herx response?
Treatment Course Patient stopped all antibiotic for a trial period to evaluate response.
Patient started A-FNG and responded to 6 drops 2-x per day and increased to 15 drops 2-x per day in the first 6 weeks. On return visit his symptoms were 70% better. He continued to improve as he increased the A-FNG to 25 drops 2-x per day. His treatment course concluded with detox, drainage, gut rebuilding and reinocultation.
All neurological symptoms resolved within three months.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Most of us have symptoms from toxins, more than from bugs.
Mold toxins are nasty, as well as die off of Bb and babs...
When we stop attacking them, some will feel better than not attacking them (due to lowered die off).
Once toxins diminish, we gain energy, the body starts doing more things.
For me, cleansing toxins + detox organ support ALWAYS brought me more gains than any antimicrobial approach.
I kept my antimicrobial herbs to the minimum, if I could.
Sometimes I couldn't, then I increased and suffered from herxes....
Still some people do not know that helping the body to detox = helping the immune system to fight bugs.
That's why I'm more for a holistic treatment: diet (low inflammatory, organic, more alkaline), bits of exercise (if I can stand it), supportive 'natural' supplements, heavy metal detox, organ support (detox), electrosmog avoidance, earthing / grounding when I can...
And homeopathy, some psycho treatments too.
Posts: 6200 | From Brussels | Registered: Oct 2007
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I think looking at the bigger picture pays MUCH more than only targeting critters.
One guy I would recommend reading is Anthony William. He's not 100% right concerning lyme disease (in my opinion), but a lot of what he recommends is good.
We gotta go back to basics: why the heck our bodies got into this mess?
You can target one problem, if you only have one problem.
But when the problem goes so chronic, so spread, ingrained inside every part of the body, I usually go back and look at the basics:
- good nutrition - gut health
- mouth health (teeth) - good sleep
- exercise - detox toxins
- detox bad emotions - avoid toxins, bad food
- support my organs - support energy meridians
...
Posts: 6200 | From Brussels | Registered: Oct 2007
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posted
Tinnitus is probably never going to go away so I wouldn't consider it a symptom at this point. Many healthy people have it and the cause varies and while TBI's or toxins caused it, it doesnt generally heal/go away.
If your gut is nudging you to take a break, give it a go. My son was using a fantastic llmd/ND and I was stunned when he stopped his treatment with a few symptoms left, left him on some herbs for another month, and he's been great for a few years, everything cleared out on its own.
My ND has said that lyme patients stop trusting their bodies capacity to heal and sometimes taking a break/waiting things out a little gets the job done.
You could try taking weekends off of antimicrobial herbs and see what happens/if you have die-off on Monday when you restart, and if all is okay, start taking them less. I would not stop them completely without your doctors approval.
All the best and keep us posted on how you are doing!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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posted
Yes .. I finally quit treating and gradually felt better and better.
Definitely take a look at the bigger picture.
The tinnitus for me is/was from high histamine foods and from salicyates in foods and in skin care.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Do you see a LLMD? Do they not have a mold toxcicity protocol for you to follow?
If not, I would try to find a good one online.
You would need to make sure your house doesn't have mold, remove it if you do, and then start treating yourself with deotx, like sauna, alpha lipoic acid, Chlorophyll. Next would be to bind the mold toxins with activated charcoal some sort of binder. Then one of the following like diatomaceous earth, bentonite clay, or some other binder you may use. Avoid constipation at all costs!
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Maybe switch to a more gentle protocol like rifing, herbals.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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