How long until you throw in the towel

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Aerose91
Regular Member


Date Joined Feb 2016
Total Posts : 206
   Posted 12/7/2017 12:30 PM (GMT -7)   
I've been on Buhner's bart and babesia protocol now for 6 miths. I quadrupled the doses 5 months ago and take things 4x/day inated of 3. I have seen zero change in anything. Absolutely zilch

I tried lyme specific herbs many times. Andrographis, gse and astragalus had no effect. Cat's claw and red sage ramped up my brain inflammation and i was waking up in fields in the middle of the night so i had to stop those.

I'm going to see Dr M in D.C. in January so i assume I'll get abx but will that all of a sudden be effective if Buhner's is completely futile for me? I'm thinking I'm amongst the 5% who have no effect from the herbs which is a real bummer

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27943
   Posted 12/7/2017 12:41 PM (GMT -7)   
Aerose - I don't know of a Dr. M in Washington, DC.


Are you talking about the Bart guru (in MD?)

I also didn't notice anything from Buhner's herbs. I did them for a couple of months prior to antibiotics...

Later on, I added them back in with abx...and still didn't notice anything.

But, I haven't given up on them. I'm now taking Crytolepis again. I figure it can't hurt...

Abx are totally different than the herbs. Yes, abx can work if Buhner's has been futile.
ABX are generally more potent when it comes to 'killing' the bacteria.

Will you update us after your appointment?

I am getting close to booking flights to Washington Dc myself - to see Dr. J.
Having trouble with the decision. Not 100% sure about it yet.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Purrrsiankitty
Veteran Member


Date Joined Dec 2016
Total Posts : 1734
   Posted 12/7/2017 1:00 PM (GMT -7)   
I also am discouraged.... Cowdens for 6 months... Buhners for 8 months...2 years of antibiotics. diet changes. I'm semifunctioning, life goes on but....how long before giving up?... definitely a personal decision. one minute, I consider stopping everything except probiotic, next minute I'm looking for my next supplement to add.

Dear Lord, all I do is complain. someone shoot me. I'll give you a permission slipÔś║
Dx May 2015 Quest pos Elisa/neg WB. Doxy only. Restest Igenix lyme pos, neg CDC, 18 +, **23-25 IND, *30 +, **31+, **34 IND, **41+, **83-93++. Retest12/16 Igen 41+, 83-93+ whole blood-plasmid pos. Retest Lyme/co's. Neg co's. Suspected Bart. 7/15 start 16 mo of doxy, azith, ceftin. Finished 09/16. Cowden start 12/16 and stop April 2017 to deal with yeast & leaky gut.Restart Buhner for BBB.

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2059
   Posted 12/7/2017 1:01 PM (GMT -7)   
Aerose91 said...
I've been on Buhner's bart and babesia protocol now for 6 miths. I quadrupled the doses 5 months ago and take things 4x/day inated of 3. I have seen zero change in anything. Absolutely zilch

I tried lyme specific herbs many times. Andrographis, gse and astragalus had no effect. Cat's claw and red sage ramped up my brain inflammation and i was waking up in fields in the middle of the night so i had to stop those.

I'm going to see Dr M in D.C. in January so i assume I'll get abx but will that all of a sudden be effective if Buhner's is completely futile for me? I'm thinking I'm amongst the 5% who have no effect from the herbs which is a real bummer


To answer your question, I don't ever give up on treating my kids. I have had many epic failures in both mainstream and alternative medicines. When we fail (eg something doesn't help), we move on to the next thing.

My best advice is to NOT give up and keep trying. If something doesn't work, try something else or add something different. Think outside the box. My Kid#1 would have never ever healed had we followed mainstream advice (which failed to help him in any meaningful manner).

Trust me - I get it. It's beyond frustrating. Really, it is.

But when things aren't working, then you need to think of other things that may be limiting your recovery. Pirouette, moderator here, has an excellent post about considering other things that may be affecting your recovery. Things like mold, heavy metals, methylation genetic pathway issues, yeast, etc...

I know somebody who has failed years of abx and is extremely sick (too sick to work). It's really sad. But this person has tested positive for mold, so now this person is changing his protocol. Maybe that's the missing link for that person.

My kids (especially Kid#1 and Kid#2 too) are extremely difficult to treat. It took me several years to get Kid#1 well, but he is well now. It was a very long battle, with a lot of failures. The only reason we succeeded is because I never gave up, kept researching, and trying different things.

I personally have had a difficult time with some herbals, as they seem to just cause inflammation for me instead of taming it down. I recently rent off the herbals and feel better off them. I'm still trying to figure that out.
On the flip side, my two oldest kids are abx failures. They failed to get well on abx, despite years of abx and multiple ones. I switched them to herbals. Kid#1 finally healed with HBOT (and herbals). Kid#2 is much better than he ever was on abx, but he still is not well (but functioning and better, still struggling though).
My point is... clearly, we are all different. I share this with you because of the four of us, we all have different paths (although somewhat similar, we are also very different).

Your post reminded me of Kid#1's journey. It felt like nothing helped for years (yours isn't nearly as long!!!). So many failures. I believe there was/is something very dysfunctional about my kid's immune systems, and what that is? I wish I knew. But for him, when we started the IV glutathione and Myer's Cocktails (we only did a dozen or two spread out), it was like it "woke" up his immune system. He started physically herxing whereas he was not physically herxing previously (physical herxing for him was flu-like symptoms - chills, fatigue, headache, really miserable).

Truly wishing you the best in figuring it out!
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2059
   Posted 12/7/2017 1:07 PM (GMT -7)   
Maybe consider seeing a NP who can help with immune system dysfunction. LDI is gaining some momentum in my area and really seems to address/help immune system issues. We have not tried this yet, but it's on my list if our current protocols don't work or stall out.

I was really frustrated at one point (well, many points, really...), and I said to my doctor at one point, after some really tough years, that I feel like I'm running out of options to try. But he said that we aren't limited, and they we need to think creatively (paraphrasing). It made me think, and I felt more inspired to keep thinking, keep trying, keep looking...
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1414
   Posted 12/7/2017 1:31 PM (GMT -7)   
Never throw in the towel... I started ABX with first LLMD in March 2010. Had only minor gastro improvements. Switch a year later to new LLMD to seek more aggressive treatment for Co's, then year or so later started to add in herbals. Hit many plateau's and progress was slow.

Started to wean off ABX in in early 2015 and stopped in March 2015 while ramping up herbals for maintenance at about 85% healed, only to relapse in May and backslide. Back on ABX since and still fine tuning herbal protocol. Back to 90% on good day. Pulsing ABX 2 weeks ON and now up to 3 weeks OFF.

so hang in there... it's a long journey

NicHostetler
Regular Member


Date Joined Mar 2017
Total Posts : 357
   Posted 12/7/2017 1:32 PM (GMT -7)   
1000Daisies said...
Maybe consider seeing a NP who can help with immune system dysfunction. LDI is gaining some momentum in my area and really seems to address/help immune system issues. We have not tried this yet, but it's on my list if our current protocols don't work or stall out.

I was really frustrated at one point (well, many points, really...), and I said to my doctor at one point, after some really tough years, that I feel like I'm running out of options to try. But he said that we aren't limited, and they we need to think creatively (paraphrasing). It made me think, and I felt more inspired to keep thinking, keep trying, keep looking...


Do you mean LDN? I haven't heard of LDI..
Very sick starting around 07/2016
Started treatment 03/2017
Bixain & Cefdinir - 3 months - plateaued
Then Biaxin & Minocycline - 3 months - did not improve
Tinidazole - 500MG 2x a day - 2 weeks
Now taking:
Mepron 5mL 2x a day
Zithromax
Nystatin
Cats Claw - 30 drops 2x a day
Gou Teng - 30 drops 2x a day
CSA - 40 drops 2x a day
Japanese Knotweed - 40 drops 2x a day

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 503
   Posted 12/7/2017 1:47 PM (GMT -7)   
Aerose,

I'm so glad you posted!! I was asking about you last week. I was concerned about you since you hadn't posted since late October. I knew you had a very difficult symptom picture. I'm so sorry you still don't have improvements. There is a reason for that. Maybe multiple reasons.

I agree that it's important to look for other factors that can be holding you back. I remember once you mentioned you did have mold issues. You may also have genetic detox issues or neurotransmitter issues. I get frustrated and scared myself, but I have had some improvements since being on Buhner's since June. At the same time though, I feel like my body is becoming weaker and more dysfunctional all the time. It's hard to explain why I have that feeling, but it makes me worry and wonder what's going to happen to me.

Anyway, please don't give up hope. If you can mentally do it, try stepping back and looking at your situation objectively like you would if you were looking at someone else. See if you can identify any likely factors keeping you from making progress.

In addition to objective analysis of the situation, try to feel your way. Are your gut instincts telling you anything?

Whatever comes to mind, write it all down and bring it up with the doctor you're going to see. Ask how to test those things out to see if they are really issues for you.

I'll keep you in my prayers that you will get the answers and direction you need.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27943
   Posted 12/7/2017 1:57 PM (GMT -7)   
NicHostetler said...
1000Daisies said...
Maybe consider seeing a NP who can help with immune system dysfunction. LDI is gaining some momentum in my area and really seems to address/help immune system issues. We have not tried this yet, but it's on my list if our current protocols don't work or stall out.

I was really frustrated at one point (well, many points, really...), and I said to my doctor at one point, after some really tough years, that I feel like I'm running out of options to try. But he said that we aren't limited, and they we need to think creatively (paraphrasing). It made me think, and I felt more inspired to keep thinking, keep trying, keep looking...


Do you mean LDN? I haven't heard of LDI..


LDI - Low Dose Immunotherapy
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2059
   Posted 12/7/2017 1:59 PM (GMT -7)   
NicHostetler said...
1000Daisies said...
Maybe consider seeing a NP who can help with immune system dysfunction. LDI is gaining some momentum in my area and really seems to address/help immune system issues. We have not tried this yet, but it's on my list if our current protocols don't work or stall out.

I was really frustrated at one point (well, many points, really...), and I said to my doctor at one point, after some really tough years, that I feel like I'm running out of options to try. But he said that we aren't limited, and they we need to think creatively (paraphrasing). It made me think, and I felt more inspired to keep thinking, keep trying, keep looking...


Do you mean LDN? I haven't heard of LDI..


Yes, I do mean LDI. smile

www.betterhealthguy.com/ldi

I use to get so confused on LDI, LDN, LDA, .... LOL (still do sometimes!). smile
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

Aerose91
Regular Member


Date Joined Feb 2016
Total Posts : 206
   Posted 12/7/2017 2:39 PM (GMT -7)   
@Girlie

Yes, Dr M the bart guru. He's technically in Maryland

Aerose91
Regular Member


Date Joined Feb 2016
Total Posts : 206
   Posted 12/7/2017 3:06 PM (GMT -7)   
1000Daisies said...

Your post reminded me of Kid#1's journey. It felt like nothing helped for years (yours isn't nearly as long!!!). So many failures.


I wish that were the case, I've been at this for 7 years.

I have been unable to work all the way to full mentally disabled since 2011. I started a list in 2012 of all the things and protocols i have tried; 79, and that's omitting the first year. I've has zero success with any of them. 3 years ago i left my parent's house because it has mold and have been living off the grid ever since as that's the only way i can stay stable enough to even communicate here, as well as having run out of money 6 years ago. I may tell my story one day but i stay guarded about it- no one believes me and i don't have the energy to defend it.

In the winters i head to the desert and the summers i go north to the california coast. If I'm unable to find a place off the grid i just stay in my car in a small coastal town.

I'm currently sitting under a cottonwood tree as i type this because it's a rare rainstorm out in the desert.

Dr M in Maryland is pretty much the last stop in this train for me. No doctor in 7 years has given me anything of value yet and i had to sell some parts on my truck to see this guy. This is all in-nothing left-last resort. I hope he has something new

I may have misspoke in my initial post a bit- i meant throw in the towel with Buhner's herbal protocol, not throw it in all together. I haven't spent all these years being homeless to just give up

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 1338
   Posted 12/7/2017 3:47 PM (GMT -7)   
Hi Aerose91 and other members,

Hope we all find a path to healing soon.

There has to be a way forward. It's out there somewhere....somehow.

For now we just keep up the fight....moment by moment.

Someday

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2059
   Posted 12/7/2017 5:53 PM (GMT -7)   
Aerose91 said...
1000Daisies said...

Your post reminded me of Kid#1's journey. It felt like nothing helped for years (yours isn't nearly as long!!!). So many failures.


I wish that were the case, I've been at this for 7 years.

I have been unable to work all the way to full mentally disabled since 2011. I started a list in 2012 of all the things and protocols i have tried; 79, and that's omitting the first year. I've has zero success with any of them. 3 years ago i left my parent's house because it has mold and have been living off the grid ever since as that's the only way i can stay stable enough to even communicate here, as well as having run out of money 6 years ago. I may tell my story one day but i stay guarded about it- no one believes me and i don't have the energy to defend it.

In the winters i head to the desert and the summers i go north to the california coast. If I'm unable to find a place off the grid i just stay in my car in a small coastal town.

I'm currently sitting under a cottonwood tree as i type this because it's a rare rainstorm out in the desert.

Dr M in Maryland is pretty much the last stop in this train for me. No doctor in 7 years has given me anything of value yet and i had to sell some parts on my truck to see this guy. This is all in-nothing left-last resort. I hope he has something new

I may have misspoke in my initial post a bit- i meant throw in the towel with Buhner's herbal protocol, not throw it in all together. I haven't spent all these years being homeless to just give up


Sorry, I didn't know the background on this. I was only commenting from the initial post/information.

I'm sorry - your story sounds so difficult. I am truly sorry for your suffering.

FWIW - I would TOTALLY BELIEVE YOU on what you've been there. But I completely understand being guarded. I don't go into the details on some really dark year (trust me, it was really really really bad) because I am also guarded too on some parts.

I understand the frustration. Trust me - I get it. When I say I've been doing this for several years, it's hard for me to admit it's been THAT long and took us that long to get my Kid#1 well now. At times, I truly felt like we were going to be "stuck" with the last, stubborn symptoms forever and that this was just going to be his life now. I honestly didn't know, at that point, if he could ever be well. But he is.

I truly wish and hope the same for you. Sending you lots of "best wishes" and "healthy vibes" your way. I hope you are able to figure out this puzzle, as it indeed is a puzzle.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27943
   Posted 12/7/2017 7:07 PM (GMT -7)   
Aerose91 said...
@Girlie

Yes, Dr M the bart guru. He's technically in Maryland


Oh, okay.

I've heard he really focuses on Bart...but hopefully he will also consider Babesia as a co-infection.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 503
   Posted 12/7/2017 7:35 PM (GMT -7)   
Aerose,

I just read another post. Wanted to be sure you saw what Artermix had to say at the end of this thread. I hope I post this right.

/www.healingwell.com/community/default.aspx?f=30&m=3815792

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 955
   Posted 12/7/2017 8:19 PM (GMT -7)   
You never give up-there are so many ways to treat this. Dr, Rau in Switzerland treat it without abx or herbs. Diet-detox-dental.
Dr. Yu treats with dental-antiparasite and detox.
There must be 50 different ways to treat-I would do them all if needed. Don't forget going back to an old therapy that didn't work after some time. Read Yolonda Hadid's book-she speaks about her many therapies.
Anyway-throw ever punch

The Dude Abides
Regular Member


Date Joined May 2017
Total Posts : 428
   Posted 12/7/2017 9:06 PM (GMT -7)   
Hi, Aerose91:

Since I'm not familiar with your history, I hope you'll forgive me asking, but what has been the results of whatever testing you've had? That is, which infections have been confirmed? I'm just curious what you're battling, infection-wise. Were any of the tests recent?

I'm truly sorry for your many years of suffering and your continued struggles. I can't even imagine how you've been able to endure all of this turmoil. I'm awestruck by your resilience.

Sincerely,
The Dude

NicHostetler
Regular Member


Date Joined Mar 2017
Total Posts : 357
   Posted 12/8/2017 7:17 AM (GMT -7)   
1000Daisies said...
NicHostetler said...
1000Daisies said...
Maybe consider seeing a NP who can help with immune system dysfunction. LDI is gaining some momentum in my area and really seems to address/help immune system issues. We have not tried this yet, but it's on my list if our current protocols don't work or stall out.

I was really frustrated at one point (well, many points, really...), and I said to my doctor at one point, after some really tough years, that I feel like I'm running out of options to try. But he said that we aren't limited, and they we need to think creatively (paraphrasing). It made me think, and I felt more inspired to keep thinking, keep trying, keep looking...


Do you mean LDN? I haven't heard of LDI..


Yes, I do mean LDI. smile

www.betterhealthguy.com/ldi


I use to get so confused on LDI, LDN, LDA, .... LOL (still do sometimes!). smile


Ahh, gotcha! Thank you! smile
Very sick starting around 07/2016
Started treatment 03/2017
Bixain & Cefdinir - 3 months - plateaued
Then Biaxin & Minocycline - 3 months - did not improve
Tinidazole - 500MG 2x a day - 2 weeks
Now taking:
Mepron 5mL 2x a day
Zithromax
Nystatin
Cats Claw - 30 drops 2x a day
Gou Teng - 30 drops 2x a day
CSA - 40 drops 2x a day
Japanese Knotweed - 40 drops 2x a day
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 16, 2017 7:49 PM (GMT -7)
There are a total of 2,906,327 posts in 318,941 threads.
View Active Threads


Who's Online
This forum has 158279 registered members. Please welcome our newest member, Hendrix.
312 Guest(s), 5 Registered Member(s) are currently online.  Details
Rick1310, SeanL88, Girlie, emotions, Jstars