Have done herbs Rife machine salt/c organic diet glutathione drips every week
What next? Just can't seem to improve, I'm just treading water.
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tailz
Unregistered
posted
I'm in the same boat, and I think I may have had an allergic reaction to artemisinin last night - so what's left?
My tongue is always coated white, in spite of 'critical care' probiotics, so now I'm beginning to believe that maybe I have something similar to what the dying bats in Vermont and New York have - white nose fungus. Scroll to pic:
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Bryon, Aside from what TC mentioned I would consider:
Biotoxins
Mold - are you exposed to any?
Drainage remedies - different than normal detox.
Viruses - I felt better on valtrex - the abx were allowing the viruses to go crazy
Heavy Metals - amalgams- find the study on here with borrelia, non-toxic levels of mercury and mice.
Do you keep a diary? I've been in treatment for almost 2 years (been sick for decades) and my opinion is that it's easy to forget improvements if you have a lot of symptoms. I actually forgot that the crawling sensation that I'd had for so long was completly gone!! Kind of weird since that symptom used to drive me nuts.
What does your doctor say? Maybe consider a new LLMD if this one is out of ideas.
Edited to add that if you haven't already you may want to look into hypercoagulation and inflammation. Also, perhaps a change in diet or yeast/fungal infections. A co-infection that you haven't been treated for or another infection like toxoplasmosis or some of the others like parasites (worms). IV abx.
Terry I'm not a doctor, just throwing in everything that I can think of since I'm a hard case myself.
Posts: 6286 | From Oregon | Registered: Jan 2006
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You cannot do any herbal protocol half-a55ed. You have to go methodical, heavy dose, and long term.
Posts: 655 | From USA | Registered: Sep 2007
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I know you have probably listed them somewhere on here before, but what are your current symptoms?
Ive been sick since August 05-
Have you ever thought of doing a few rounds of Difflucan?
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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adamm
Unregistered
posted
I don't see any fluoroquinolones on your list. Anyone know if
there ARE any
organisms that only respond to them ( Some docs say possibly,
but maybe because they've gotten
too friendly with the reps for these meds--who knows?)
check out fqresearch.org before you decide whether or
not you're going to take one of 'em, though--unless there
are indeed organisms that can only be killed by these,
I would STRONGLY recommend abstaining from their use.
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I find it VERY odd that you have been on all those medications, antibiotics in a 14 month time period.
Are we not supposed to stay on an antibiotic or a few antibiotics for at least several months, or until they stopped working and then switch
to another antibiotic or couple anitbiotics?
If you are rotating and changing this and that ins such a short time period, how are you going to get well? There are not that many antibiotics to fool around with doing this.
You stay on say Biaxin, and Flagyl and something else for 6 months, or 1 year or if it quits working then go on to something else.
the more you STOP and start an antibiotic and then restart it is starts the
antibiotic resistance happening.
I feel that the ones that treat until an antibiotic stops working, then switch to something else, that is the way to go.
Why on earth have you been on SO many antibiotics in such a short time period?
I think you are seeing a good LLMD are you not? and this is the way he treats? My LLMD did not treat this way, and I have not heard of any other LLMD's doing this, but then again, I dont know all the LLMD's,
I dont like to BUTT into your business with your own LLMD, but I like to keep up with what works and what does not.
As I recall you were herxing like heck, so why have you been on so many antibiotics? in such a short time period?
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I know i went quite a while before any real improvement try levaquin watch the tendon stuff though.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
With my first bout of lyme, my doctor wasn't sure what he was chasing. He highly suspected lyme and did a round of doxy but since the test came back negative, he couldn't be sure. So every month, he changed the abx. That was in 1995 and it took only 6 mths to get me well. Rotating the abx worked.
Byron,
Anything natural you do takes time. It isn't like an abx that is a concentrated dose. Abx, when they work, work fairly quickly and we are used to that kind of result.
The diet, herbs, detox all take time.
I can't begin to suggest what you need. Your body is uniquely yours. Stick with a good LLMD and if they aren't trained in alternative care, find a second doctor who is. Work with both doctors and hopefully, you will get the best of both worlds.
Of course, be sure both doctors know everything you take and don't add to or take away from your treatment without running it by the doctors.
Hope you feel really better soon.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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tailz
Unregistered
posted
It's not yeast - at least the yeast is not primary. I take a critical care formula probiotic which takes care of yeast infections elsewhere within hours, but my tongue remains white. Also, I think I was given something for thrush a couple of years ago, and it did nothing.
Whatever is killing the bats, that is what is killing me.
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Peacesoul
Unregistered
posted
quote:Originally posted by tailz: It's not yeast - at least the yeast is not primary. I take a critical care formula probiotic which takes care of yeast infections elsewhere within hours, but my tongue remains white. Also, I think I was given something for thrush a couple of years ago, and it did nothing.
Whatever is killing the bats, that is what is killing me.
I used to have a very white tongue. Since doing the oil pulling, my tongue is totally pink and clean. Maybe give it a shot
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Get tested for viruses. See "Viral Testing" here at Lymenet.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Levaquin was a miracle drug for me. It is a good suggestion. We were talking about possible IV for me, but the Levaquin just snapped me out of it!
I was on Levaquin, mino, plaquenil, tindamax, malarone, lariam, artemisia, and nystatin (yes, as the same time).
Also I would look into other things mentioned -- detox (maybe you need cholestyramine?), viruses, heavy metals.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Bumping for Byron.
Posts: 1366 | From Southeast | Registered: Sep 2005
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ByronSBell 2007
Unregistered
posted
I stayed on each ABX for atleast 6-8 weeks. If there was no change then my LLMD would move me to the next one...
I am going to be switching LLMD's at the end of this month, hopefully the new Doc will have something to try
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I'm glad you are going to see another LLMD. I've stayed on abx for much longer periods before seeing improvement.
I hope your new LLMD will be able to figure out what to do now.
Good luck!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Tailz... You said...
"It's not yeast - at least the yeast is not primary. I take a critical care formula probiotic which takes care of yeast infections elsewhere within hours, but my tongue remains white. Also, I think I was given something for thrush a couple of years ago, and it did nothing. Whatever is killing the bats, that is what is killing me."
``````````````````````````````````````````
I am not wanting to argue... just concerned.. but I really think it is yeast.
Probiotics are fine and dandy but they absolutely won't kill a bad yeast infection. You would need to take something that addresses that specifically.
Also... taking something for thrush a couple of years ago is totally useless now. Some folks take meds for thrush daily and still can have problems.
To properly address yeast you would need to learn about it, know the symptoms, eat properly (strict diet) and take meds (vaginal and oral) to kill the ongoing infection.
Some folks need to stop the antibiotics due to yeast. It can make you as sick or even sicker than Lyme.
Please don't poo-poo it until you seriously consider it. I'd hate to see you suffer and stay feeling bad and find out two years from now it wasn't white nose bat fungus causing the problem.. but instead it was yeast all along.
posted
What are your symptoms? If I recall, we share NAUSEA!! What other tests/doctors have you had to rule out other conditions? What were your Lyme test results? I'd be happy to try to trouble-shoot this with you....
Kristin
Posts: 561 | From mass | Registered: Jul 2007
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ByronSBell 2007
Unregistered
posted
quote:Originally posted by KS: What are your symptoms? If I recall, we share NAUSEA!! What other tests/doctors have you had to rule out other conditions? What were your Lyme test results? I'd be happy to try to trouble-shoot this with you....
Kristin
Yeah,nausea is a big one along with a bad headache, muscle pain, fatigue, eye pain, ear pain, floaters, nerve pain on top of head, some joint pain,insomnia. I have tested for co-infections through Igenex,Fry, Bowen, and some other lab and everything was 100% negative.....
I've been toover 25 different dotors and have ruled out a TON of stuff.
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Hey Byron, I just wanted to lobby for not relying on co-infections testing.....I've never tested positive for any co-infection either, but recently we found out my toddler tested positive for babesia. He definitely got it from me in utero, so that means I definitely have it. The testing just isn't good, no matter what lab.
Sad but true.
You need an LLMD who will treat based on symptoms. Since you were on Rifampin at one point, it sounds like your LLMD thinks you have bartonella. Rifampin takes a long time to work, I was on it 4 months before I saw improvement. I'm still on it, 8 months later.
Posts: 3528 | From US | Registered: Apr 2007
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posted
I sure hope you find an answer soon!!! Very soon!! I would try the quinolones too....but be very careful of bad side effects. They can be long lasting.
As for the yeast......I hate to disagree with my good friend TC, but liquid Nystatin is not a good choice in my opinion.
The liquid Nystatin contains [drum roll] SUGAR!!
But I do agree that all the probiotics in the world will not KILL yeast.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I think you should see another LLMD for a 2nd opinion if you can. I am seeing another LLMD, and will see if I get better from him.
He ordered more testing done, different testing, the Babesia Duncani, and the Babesia FISH and I was positive. Also different ways of treating too with this new LLMD, wether or not
I will be ok with this way of treating with this new LLMD, I will soon see.
Maybe a 2nd opinion for you would be very helpful?
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I was told,,,many moons ago,cant remember who said it even,,,that IF treatment doesnt work,,,suspect bart.
tests only good for one or two strains of 9 possible,,, now,,, KNOWN strains. How many dont they know yet??
Somewhere else more recently saw where somebody of knowledge had the opinion that ALL lymies had bart also!!
I would say give the bart a good GO for at least 6-8 months and then see whats happening!!
Levaquin,riphampin, and a combo of zith as I read the BEST combs,,,I understand it ALWAYS takes a strong combo.
Hit it hard and long,,,then see where your going.
Have you seen ANY herxing and or improvement??To what and how long??hopeful for YOU!!--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Hiya.
My LLMD said that zith should not be used as a combo with levaquin b/c similar actions. Just wanted to pass that info along.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Have you been tested for Mycoplasma? I have it and also had a lot of your symptoms. Some still remain. So far I've done Doxycycline for 6 wks., Ceftin for 8 wks. and am now on Zithromax b/c the Myco isn't gone.
Posts: 2541 | From Northeast | Registered: Jan 2008
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Byron, where are you going to see another LLMD? Last I heard, you were seeing the same one my hubby is....one of the best.
PM if you prefer. Thanks.
Posts: 1366 | From Southeast | Registered: Sep 2005
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
Hi Byron,
So sorry to hear your not doing so well, as you know I was under the same LLMD as yourself and got so poorly, I switched LLMD's back in January and found out the reason why........
Firstly I tested positive for the 5 HLA gene defect so the more AB's that were thrown at me the worse I got as I did not have the ability to eliminate the neuro toxins so am now on CSM/Actos and heavy detox for 2 months before any AB's and then will be on a stron detox whilst on AB's
I then was diagnosed with chronic Bartonella and Babesia, apparantly where these were not treated they have been left to go wild, the bart became so severe I could not control my CNS symptoms, so my next step in a week or so is to start Bart treatment (levaquin with trental for drg penetration and magnesim mylate - then Burhner herbs for bart)and then when Bart is more under control I treat Babesia and once these co-infections are more under control I go back on IV for Lyme.
As yourself I kept taking what my old LLMD told me to take and got so unwell so perhps a second opinion would help you.
posted
Also try: Imipenden, Zienam and Ceftriaxon. Alsp Fluconazole (Diflucan)
See if this kicks something!
Posts: 347 | From sweden | Registered: Feb 2008
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
HI Byron. Been treated for five years now. I probably should not tell people that becuase it doesn't give one a lot of hope.
Nevertheless, I wanted to ask you why I don't see Mepron on your list. I see malerone, but not mepron. Have you tried that for babesia?
Also, I am doing claforan shots right now, and for me, it is as aggressive as the I.V. that I had was. 4 grams a day for 5 days, and then 2 days off.
I have, also, in the past, taken as many antibiotics as you seem to have taken by this point. AT one time, I had an I.V. in my arm, was on 2,000 mg tetracycline (and throwing up several times a week), zithromax, mepron, artemesia, and plaquenil, all at once.
Byron....my best advice is to embrace, if I may use that word, that this is your day to day life, and keep plugging away at it.
My experience has been that just when you think you've tried every combination and seen every doctor, another window opens somewhere you didn't expect it, and you are able to go on, find a new treatment....
Most important part of this is the following:
Don't wait for remission to think you are living your life again. Life it right now, today, in each little moment that you can scrape meaning out of.
It is the waiting that sucks the life out of us.
That is what I have found.
And finally, in my most low moments, when I didn't think there were any answers anymore for me, I turned to this network of people, who lifted me up until I could go on again.
We are here.
mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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ByronSBell 2007
Unregistered
posted
I just found out I have bartonella, thanks to my mom who can't figure out how to read a test!
It came back 1:64 IGG, everything else was negative. Starting levaquin soon
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posted
I happen to be going to the same doctor that Byron has been seeing and although I am not getting better CNS symptom wise I have only been treating since August of 07. I am not ready to jump ship yet.
However, after reading the responses a thought came to mind.
Have any of you that have made improvements after switching doctors contacted the old doctor to inform them what helped you.
We need to insure we pass on good information to these doctors so it might help someone else down the road.
Just my opinion. Roger
Posts: 25 | From Missouri | Registered: May 2007
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ByronSBell 2007
Unregistered
posted
quote:Originally posted by tosho: I knew it , Byron !!!
I am in the same boat as you, and my igg for bartonella was also 1:64
Good luck !
Is 1:64 a high amount of bacteria? How hard is bart to get rid of? Are you doing better on levaquin or rifampin?
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Byron, I hope the levaquin works for you!! Hubby has been through most of the same antibiotics you have...including levaquin.
Interesting though, that he hasn't been on mepron either. Someone else asked about that. Now I'm wondering why that one hasn't been tried???
Posts: 1366 | From Southeast | Registered: Sep 2005
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ByronSBell 2007
Unregistered
posted
quote:Originally posted by tosho: Byron, one more thing:
What was your response to Rifampin ? Which abx did you take together with Rifampin ? And for how long ?
I remember the rifampin making me feel bad but I was on it for maybe 3 weeks I think. I think I took biaxin with the rifampin when I was on it.
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
Ask your LLMD about starting Trental before Levaquin as this is what my LLMD says has the best effect as it opens the capillaries to give deep tissue penetration(dosage of levaquin is weight dependant). You start 400mg Trental and then Levaquin with magnesium mylate to help any potential tendon damage - I am using magnesium mylate 2000-3000mg from nutramedix.
Then once established add in the burhner herbs for bart for extra coverage.
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Rienna,
What is your detox protocol? I understand you are on Actos/Chlo..., but what other herbs are you taking? What things can you do for detox? I have the same problem. I read on another post you are doing 30/40% better. Good for you.
Thanks, Cherylsue
Posts: 1954 | From Illinois | Registered: Aug 2007
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
ByronSBell, is it Dr. C you see? That is my LLMD. It's good to see others reactions, but it's a bit disconcerting when there are no good results. He pretty much follows most of the protocols the other LLMD's follows. Rianna's new LLMD sounds intriguing with the detox. I certainly react negatively to most abx, so I hope she shares more of her protocol since it seems to be making a difference for her.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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It came back 1:64 IGG, everything else was negative. Starting levaquin soon
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