tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
I have been on ABX going on four years...clearly they are not the answer...what is....
I am also doing parasite treatment tooo...
dont know what else is left..
27 feel like giving up....
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Tricia,
Don't turn away from a horizon that could be brighter, just walk in a different direction.
I understand the deserved frustration & beyond. For some, abx have worked but the variables are vast. So much depends on the treating doctor and more depends on the patient's overall mix, and how their body can manage all that is tossed at it.
Still, you seem very clear that, for yourself, you need another avenue, you might want to explore what others who have been in your place found to help. I hope you find what works for you and also still have energy to pursue it as, whatever it will be, will still be multi-faceted. Someday maybe there will be easier answers but it sure seems that no one gets through this lyme landscape without a lot of hills and valleys with multiple twists & turns. Good luck. Hold onto that image of what success will feel like for you.
LL Naturopathic links here, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In another thread just the other day, you asked for detail about the Allicin based protocol. But that thread seems to be hiding.
I highly recommend it. I did exceedingly well with it when I could do that for several months at two different times. Budget just did not sustain me, however reasonable the top quality formulas are, though.
Buhner's books are also important but I never felt nearly as good with that as I did with the full Allicin protocol. Yet, in fairness, I could never afford the full Buhner protocol, ever . . . nor did I ever have the mental energy to figure it all out, where to get what for my needs.
But, by the time Buhner's books came out, I was so out of money for more than about one supplement a month. Yet, his detail was vital to me. His books are still "MUST READS" regardless of the path chosen.
The allicin protocol has that all worked out so there's far less sorting from various vendors.
Topic: Garlic vs Allicin -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The one supplement (as one is all I can afford) that seems to be "holding down the fort" for me now is Berberine. As solo efforts are usually never a good idea, I do add green tea daily, and andrographis on and off.
I'm trying to learn about RIFE but just don't have much brain energy to figure that all out. I actually have an EMEM5 rife but there is a lot to know about addressing heavy metals and parasites first and in the early stages of rife treatment.
Then, to figure out which infections to treat first, there are a lot of numbers to sort through to dial up, etc. For you, the Rife Links should help but if you can find someone in your support group who has progressed with rife, that would be grand to have a real person to give you some guidance.
A LL ND, ILADS trained, even better.
Still, for something to just "hold down the fort" until you figure out your next step, you might want to know about:
posted
Keebler... just turn the Rife on and go with it. Very simple.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Lax mom, that Rephresh product has held your infections at bay, meaning the lyme infections? Amazing. Or did you mean the female ones?
Posts: 3528 | From US | Registered: Apr 2007
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
I think she meant female ones.
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Have you used the right abx to treat all your infections? Have you been tested for protomyxzoa?
Sometimes I needed an antibiotic break. I just couldn't detox all the chemicals out of me and I was paying a price for it. During those times I took massive amount so herbs.
I had to go back to the abx to get rid of the infections. Usually I realized I had been over treating one thing ignoring (denying) the other infections. When I switched what I was treating I felt better.
But then I would get sick again as another infection emerged and took over. Finally exhausted, I found out I had protomyxzoa. When I began the diet and stomectol for it, I was much better - almost well, and off abx.
Then I was re-infected maybe even with more than one infection! So this goes on and on. Who would every think I had tick relapsing fever! I am off to see Dr F in a little over a week.
I have been doing IV chelation for heavy metals. My lead is unbelievably high and I have really high cadmium too. This is helping so much I am not taking any abx and whatever I had is not nearly so active.
You just have to look at everything. I don't believe that the herbal remedies do much good on their own. You need to address everything - parasites, metals, methyl cycle mutations as well as the individual infections.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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tricia386
Frequent Contributor (1K+ posts)
Member # 29623
posted
I have been with the top llmd yes the man himself and I am still not better
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
CD57: I meant the recurrent female ones due to a weakened immune system.
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Treating parasites can take a while (sometimes several yrs) to eradicate. It was the only thing that put me back on the road to recovery.
You have to be persistent and depending what antiparasitics you are taking, you should start "seeing some evidence in the toilet.
For me, adding salt/c to the herbs made them let go. Warm water enemas to release dead and dying parasites from the lower colon is suggested. I also took coconut oil, coconut water, kefir and extra cloves to kill 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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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Tricia and laxmom--did the man himself look at all the diagnostic points that he writes about?
Tricia what are his suggestions/recommendations for you? Image he agrees its time to try other stuff?
Posts: 3528 | From US | Registered: Apr 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Maybe IV chelation like Neff is going would help? I know of 2 other folks who felt that chelation took them in the right direction.
Posts: 3528 | From US | Registered: Apr 2007
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
CD57: to a point, I guess, but I still had to do a LOT of research on my own and seek out answers to some of those 16 points...and just listen to my body. I think the book has helped more than anything.
I've made my biggest treatment stride (30% improvement now) during a lapse in treatment over the past month/month and a half- while going after other things with other local providers (not LL, just complementary medicine-ish) while waiting on my follow up appt with the LLMD's PA this week:
-sleep, ANS dysfunction, underwater PT, colonic, massage, IV Meyers with Minerals and IV Glutathione, fixing my insulin resistance, etc, etc
Not to say that those were my problems all along...because they definitely weren't. I NEEDED that 1st year of massive abx, anti-malarials, anti-fungals and second year of low dose abx, anti-virals and a few rounds of antiparasitics and lots more anti-fungals.
But, now, things have completely morphed and I'm not chasing the same problems I was when I first got sick.
First it was: infections, infections, infections. I knew it, the Dr knew.
Now its: Liver dysfunction, candida, ANS dysfunction, sleep problems, deconditioning, insulin resistance. Infections? I don't know if they're still active.
All I know is that by addressing these other nails in the foot, I'm making progress. So that leads me to think, I may have knocked the infections down a while back and just didn't realize it because the symptoms of all of the "nails" are sooo similar.
It's all trial and error for me...which is not fun...but at least I have a small success to show for it right now
I literally played around with my supplements over the past month. My liver hurt, so I tried different ones to see which combo took the pain away... and I found it. It shouldn't come to that, but that's our reality.
Then I methodically tried that with all of my supplements. I tried different combos and found the group that helped me the most. I knew it was ok to do that because I was told to take ALL of the supplements (not helpful to overload my struggling liver)...so I knew that taking a smaller amount in a different combo wasn't going to hurt.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Turning from abx if your heart and mind tell you this is where you need to go.....go.
But this can and will be a tough decision on your part. Lots of research and reading. Note taking, saving sites in your favs so you can go back and read it again.
You really need a naturopathic doctor IMHO to go down the road of a different path.
Tricia, where you live, I would think you should be able to ask around many places and get names of alternative treaters in your area.
Go to health food store and ask several employees the names of docs they have heard good things about. If you see a chiro, ask them to recommend someone.
Post in seeking a doctor asking for naturopathic/alternative type doctor in your area or state. Not sure if you are in big city or not?
Tricia, I too am an abx failure. It happens. There are many threads on this site in past years. Use the search button.
If you want to read threads about herbs, put herbs in the search word(S) line and medical and maybe even general forum in that line. Any date, because some really good reading goes way back 10 yrs.
There are many options.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
I haven't completely finished "the mans" book, but from what I have read so far he doesn't give mold much credit. Let me tell ya, if you are mold susceptible HLA DR test will tell you, that could be a massive piece of the puzzle for you. It was, and still is for me.
It's seems as though a lot of the people who get the sickest are...I remember reading your posts through the years and your experiences are very similar to mine.
I have gone off abx myself after 3 1/2 years. Now I have found that there is aspergillus (a type of mold ) growing in my sinus. I am treating that now, and the herxing is unbelievable...
It is never just Lyme...I hope you can find the missing pieces to the puzzle.
Posts: 845 | From Northeast | Registered: May 2011
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
ABX are a big part of the answer but the not whole answer. Integrative medicine plays a big role in this picture. If you don't deal with restoring proper sleep, hormones, the endocrine system, adrenals, heavy metals, candida, detoxification, etc., it will be very hard to ever get a hold on this condition, especially if you were undiagnosed for a very long time.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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quote:Originally posted by CD57: Maybe IV chelation like Neff is going would help? I know of 2 other folks who felt that chelation took them in the right direction.
Chelation can be a big help in my opinion, especially after you look at your red blood under dark field photography you start to get it, why its so important. Much of the metals in the body is carried in the blood cells and interfering with their work and health... on the other hand most of the metals are lodged in the liver in most people... liver being your main organ of systemic detox....but metals can lodge anywhere really.
My doc said that using colloidal silver at the time of the metals detox will not either hinder nor slow down the detox or nor render the silver ineffective. That was a concern for me.
Im going to start a home detox protocol in February using oral EDTA, chlorella, cilantro and a homeoapthic metals detox and a number of supportive vitamins.
Posts: 803 | From USA | Registered: Oct 2013
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I don't know how effective this is, but here is a link for making your own liposomal vitamin C. You can also use this recipe to make liposomal glutathione (use 7 grams glut).
I made some lipo glut yesterday. It tastes pretty awful but maybe it will help get rid of the metals I have. You can by Liposomal EDTA but it is expensive. I don't know why you couldn't make it with this recipe.
When something is put in a liposomal carrier (or whatever you call it), it goes through the digestive system straight into the cells. This makes it more potent with less side effects.
Things I learned not in the recipe. Don't stir it with a metal spoon! Use wood. Let the lecithin soak for an hour. Use GMO lecithin if it is soy. You might want to avoid soy altogether and use lecithin made from sunflower seeds.
Supposedly liposomal can be nearly as effective as IV, which is very expensive.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Tricia...
Antibiotics were not the answer for me, either.
You have a lot of advice to sort through here...but please read the thread on mild hyperbaric treatment (3 pages)...it was the answer for me, and I am now well...
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