RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
This is long, so very sorry.
I am very sick and need help.
I was on abx 3-1/2 years and felt good, but knew I was not 100%. My LLMD is a naturopath and MD. She suggested I try the Cowden protocol and says she has a high success rate for patients with it. We also thought my remaining issues at that time could be yeast related. I switched to Cowden and rife and also treated yeast. I did well for a year. I lost my Mom and two months later was getting sick again...so could be a relapse.
I have been getting sicker since November. My LLMD wants me to do A-Bart and A-Babs but I tried them before for 6 months and they did not work. I don't feel like I have any time to waste on something that did not work before.
My main symptoms are digestive issues. I was recently diagnosed with a hiatal hernia and have belching and gas. Endoscopy revealed acid reflux injury. I also have sweats and chills...day and night. My feet stay sore all day and throb and also feel cold. I have brain fog, back pain, and my head hurts on top some of the time.
I have been battling parasites for 3-1/2 years.
I am also currently taking Diflucan and nystatin for yeast and have been herxing.
I think I really might need a second opinion, but it takes so long to get into a new LLMD that I honestly don't feel like I will make it. I know my issues are getting serious and could cost me my life if I don't get help soon.
My LLMD and her family have lyme and are all doing well.
If anyone has any LLMD suggestions for me, please PM. I will travel to surrounding states from TN, but cannot travel monthly.
If I could figure out which infection was causing the most issues, I do have some old abx.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
RZR- I am so sorry you are feeling so lousy
Your symptoms could be either bart or babs, it is hard to say.
If you have bactrim or septra, it would be effective against both. Also effective against toxoplasmosis. (?)
So would CSA tincture from woodland essence. The only herbal tincture (aside from my parasite ones), that has helped me so far.
Not sure how old your abx is, you'd want to be sure to check the expiry dates.
Rifampin and a tetracycline works on bartonella, mycoplasma AND brucella.
Clindamycin works on BLO and BabLO.
Best to pair it with something else like arteminisin or cryptolepsis if you can.
Doxy is very expensive now but is not so expensive through other means, as an antibiotic for other species, like how others have mentioned before.
Lauricidin off greenandhealthy is honestly my go to when I am feeling run down. Is gentler on the body at killing viruses, and kills yeast also.
Disclaimer: not that I am advocating self treating.
But let's face it, we've all been there.
Aside from cryptolepsis/CSA all other herbs were useless for me for TBD's so I understand why you want something stronger.
XOXOXO Greta
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
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Member # 40917
posted
Sorry I didn't do the lyme abx just the co's.
Azithromycin should not be paired with certain groups of abx (macrolides?), but rifampin is OK, as sometimes paired with other abx with similar side effects, it can affect the qt interval of the heart.
Quinolones effective for bartonella. Hard on tendons.
Doxy for chronic anaplasma.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Judie
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posted
"My LLMD wants me to do A-Bart and A-Babs but I tried them before for 6 months and they did not work. I don't feel like I have any time to waste on something that did not work before. "
Yikes, don't go backwards. You already know those don't work.
I saw 3 LLMDs before I picked the one who had a protocol that worked for me. The first two got excellent reviews, but their methods just didn't work for me (I'm sure their antibiotics/supplement protocols worked great for other people though).
I'd start making appointments with other LLMDs and get on the cancellation list with the receptionist. Call every day to see if there's been a cancellation if you have to.
Posts: 2839 | From California | Registered: Jul 2012
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You can get Buhner's book on babesia co-infections.
Crypto and art could help.
Zithromax + Mepron Clindamyacin + Quinine
Posts: 711 | From CA | Registered: Dec 2011
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Heartburn and belching can be due to gastritis, or inflammation of the stomach. I got this after taking Ibuprophen for pain for three years. (Only one per day!)
Did your doc tell you gastritis? If so, I can make some suggestions.
First, stop the offending med. PepZin GI did wonders for me. Reviews at iHerb.com show that many people agree.
If you are passing alot of gas, that is a sign that your bowel bacteria are not up to par. Drink a cup or two of Kefir daily...I had great results. Best if you make it yourself.
Posts: 6949 | From Lancaster, PA | Registered: Feb 2004
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
Anyone know if it's ok to drink milk kefir if you have yeast?
I do have gastritis. Someone else suggested gastrazyme and I have that ordered.
I suppose the symptoms could be related to parasites. No matter what I take, I cannot get rid of them.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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Ellen101
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posted
At this point your issues may be due to your gut than Lyme. If you can I would have some food allergy testing done, to see which foods to avoid for now. Concentrating on healing your gut may make you feel a lot better. Leaky gut can cause a whole range of symptoms, many that mimic Lyme.
If you are not already you should remove all gluten, dairy and processed food. Bone broth would be a great healing tool for you as well as L glutamine. The Autoimmune Protocol Paleo diet would help as well.
Posts: 1748 | From United States | Registered: Dec 2011
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Ellen101
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posted
At this point your issues may be due to your gut than Lyme. If you can I would have some food allergy testing done, to see which foods to avoid for now. Concentrating on healing your gut may make you feel a lot better. Leaky gut can cause a whole range of symptoms, many that mimic Lyme.
If you are not already you should remove all gluten, dairy and processed food. Bone broth would be a great healing tool for you as well as L glutamine. The Autoimmune Protocol Paleo diet would help as well.
Posts: 1748 | From United States | Registered: Dec 2011
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
Ellen....you could be right. My GI issues are definitely my worse problems right now.
I also still have yeast issues. I just cannot the stomach issues out because I will go for months with the same diet and no stomach problems and then it hits again.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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posted
top of head pressure is def for me a babs symptom. Crypto plus was really hitting it but I'm switching to just crypto, liposomal art and GSE, because crypto plus has other ingredients that people can get a rash from.
even though when i did zyto (a form of ART testing)last week crypto plus came up high for me so i should continue taking it.
sorry about your mom
Posts: 908 | From Albany | Registered: Nov 2008
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Marnie
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Member # 773
posted
There is a synergy with Diflucan and Berberine (Glycox)to treat resistant yeast:
The natural approach is to take VCO - virgin coconut oil, Omega 3 fatty acids (DHA, EPA and a tad of vitamin E is in the formulations)and cod liver oil daily. This "protocol" was formulated by a woman (doctor - pediatrician) whose husband has AD and she is slowly reversing it using those supplements.
Caprylic acid in VCO is anti-bacterial, anti-viral and anti-fungal. It is converted in the liver (provided the liver is healthy) to a ketone called BHB. That ketone can cross the blood brain barrier and enter the cells' citric acid cycle -> more ATP.
The cells, it is believed, are being starved of glucose (insulin resistant) and so she is substituting ketones...as an alternate fuel.
Glutamate (brain "accelerator"), is also an alternative brain fuel, but too much glutamate isn't brain friendly. Our brain cells prefer glucose, but it appears so does Candida - which is "stealing" our cells' supply of glucose.
She also feels the cells are deprived of DHA (especially). This is structural...is a component of our cell walls. EPA is functional - reduces inflammation.
For dosages and timing issues, follow the same as the use of berberine to treat diabetes (under table 1):
Keep in mind...it is VCO AND fish oils (Omega 3 fatty acids) AND cod liver oil (VERY high in A and D).
Posts: 9435 | From Sunshine State | Registered: Mar 2001
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posted
Have you tried benedyrl. I took one or two every night and it completely fixed my heartburn. I think I was having an allergic reaction in my stomach. I also took Histame.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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glm1111
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Member # 16556
posted
Have you tried the combo of salt/c and antiparasitic herbs to get rid of your parasites? It can take 5yrs or longer to get rid of parasites because they lay sooo many eggs. Cloves kills the eggs.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
I tried salt/C a long time ago, but could not tolerate it.
Right now, I restarted MMS last week because it is supposed to kill everything. I tried it a few months ago and the herx and stomach problems got so bad, I had to stop.
I am beginning to think this could be more parasite and yeast related, as I think I would feel like a rdifferent person if I could get my digestive problems cleared up.
I made an appt. with a chiropractor to adjust a small hiatal hernia to see if that helps.
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2roads
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Member # 4409
posted
RZR,
why not get your "digestive problems cleared up" before you go back on things that made you more ill. Please.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I wish I could help- I don't know.
All I can offer is I have been off specific TBI treatments for awhile now, and focusing on my gut with strict Paleo (no grains, no dairy, no legumes)
and doing high dose Curcumin (with Enhansa) and it's still clearing out my gut. I have some natural stuff for yeast
(right now SF722), herbal tincture for parasites over full moons, and castor oil packs about 1x a week. And doing pretty good. Still not always easy to deal with, and it seems like it's taken a whole lot of time and work for me on gut health, but honestly years in the making, so...
But right now for me, strict diet and high dose Tumeric are my staples. Exercise, keeping bowels moving, trying to stay low stress, quality food.
I would suggest (since you are asking) maybe not starting up MMS again- focus on detox... How is your diet? I'm sorry about your loss, too----
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
I am going to suggest a somewhat different approach than most others have.
First if you have gastritits as shown by endoscopy then I think you are dealing with something more than just candida.
Gastritis can of course be caused by many things. For hubby there were multiple causes -- G.I. parasites (ascaris, giardia and another one), BLO or some strain of actual bartonella, low stomach acid (he took betaine hydrochloride for that) and indirectly babesia.
For hubby babesia caused constant nausea and also dry heaves. One G.I. doc admitted that dry heaves could actually cause gastritis.
Celiac disease or gluten intolerance is another possibility.
Aloe vera gel and slippery elm bark are both good for healing the stomach. I would suggest avoiding l-glutamine.
Another possibility that needs to be considered is h.pylori.
When hubby had a small superficial gastric ulcer from either bart or babs the thing that finally healed it was the herb comfrey. I bought the dried leaves at the health food store and added it to some hot water to make tea and had hubby drink the tea plus actually chew up and swallow the leaves in the tea.
Levaquin and other drugs in that class will kill other bad G.I. bacteria such as klebsiella and enterobactor as well as bart.
I really think you are probably dealing with either a bacteria or G.I. parasite plus possibly babesia as well.
If it is just candida or other milder bad G.I. bacteria except for bart then possibly the med Xifaxan might help.
I suggest rereading the article Bell's Palsy of the Gut at the link below.
I think that since you have been off antibiotics you are probably dealing with something infectious -- you need to remember that it is easy to be exposed to G.I. bacteria and parasites even if they have been treated in the past.
I would suggest ivermectin as an easy med to take if G.I. parasites are suspected and it may also be of some help if babesia is the issue.
But I do not think just healing supplements will work without getting rid of the offending pathogen.
For babs I would not repeat something that did not work in the past -- a waste of time and money in my opinion. If you want to go the herbal route then possibly cryptolepis or one of the other newer Buhner herbs plus artemisinin would be a starting place.
Olive leaf extract is also pretty good to kill bad G.I. bacteria. Hubby took a liquid tincture that I think was a VitaCost brand that was helpful.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lyme in Putnam
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posted
Feel better soon, I'm sorry about your mother.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
Thanks, everyone.
Oh, my! I have been taking Diflucan and nystatin. Yeast is streaming out. I had no idea I could still have yeast this bad after being off meds 15 months.
Could yeast be the cause of all my remaining symptoms.....severe stomach burning and GERD, sore feet and cold feet, insomnia, sweats & chills?
I've had lufeneron for probably a year and afraid to use it....gave in and took my first dose!
[ 03-30-2014, 07:02 PM: Message edited by: RZR ]
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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Carol in PA
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posted
quote:Originally posted by RZR:
I've had lufeneron for probably a year and afraid to use it....gave in and took my first dose!
Lufenuron! Lufenuron: Liver-safe Candida cell wall suppressor (Chitin synthesis inhibitor) works similar to our immune system
RZR, as you may recall, there were several people here who purchased this, and then did not take it.
So...the rest of us are waiting to see what happens. Posts: 6949 | From Lancaster, PA | Registered: Feb 2004
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
Well....the Lufeneron did not kill me!
I am still alive this morning and notice no effects yet.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
I got interested in it a while back when I read that Lufenuron will kill liver flukes.
Keep an eye open for leafy looking things floating in the toilet, stained green from bile. This would be part of a fluke, looking like this:
The one I saw was about the size of a nickle.
Posts: 6949 | From Lancaster, PA | Registered: Feb 2004
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
Herxing from Lufeneron...even though I took Diflucan and Nystatin daily for 3 weeks before. I started herxing yesterday....took my last loading dose this evening.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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Jamers
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Member # 28016
posted
Hi RZR, Sorry to hear you are still having issues. I feel that yeast could be a huge component as I have the very similar symptoms as you. I have been off antibiotics for over a year too and still have yeast issues. I notice the nastiest taste in my mouth if I eat sugar, its worse in the morning. I have a lot of vision floaters, sore shoulders and since starting Cumanda/Samento have had pretty bad GI upset and headaches. Things that had gone away. I also sweat more if I eat sugar or even coffee. I'd like to try Lufeneron. What are your herxes like?
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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RZR
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Member # 20953
posted
Herxes are mostly lower back pain, sore feet, and more sweats.....pretty much like other herxes for me. I also still have stomach burning and it's worse some days than others, so not sure if that's part of the herx as it was bothering me before.
I am still seeing yeast exit. I had no idea I still had issues this bad. I am so pleased with Lufeneron I ordered two more packets today! I am also on the anti-candida diet and hope to finally get rid of this!
An added bonus....Lufeneron also helps kill parasites and I can vouch for that! I am seeing more results, and still using the same anti-parasite meds as before.
Some symptoms I've had for years are improving...arthritis in left knee is gone, swelling in fingers gone, feet are still sore but improving!
Wish I had tried Lufeneron years ago!
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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surprise
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Member # 34987
posted
Oh for pete's sake, I just bought some online.
RZR, glad you're feeling better!
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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