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How long until you throw in the towel

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Posted 12/7/2017 7:30 PM (GMT 0)
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
Posted 12/7/2017 7:41 PM (GMT 0)
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.
Posted 12/7/2017 8:00 PM (GMT 0)
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 slip☺
Posted 12/7/2017 8:31 PM (GMT 0)
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
Posted 12/7/2017 8:32 PM (GMT 0)

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..
Posted 12/7/2017 8:47 PM (GMT 0)
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.
Posted 12/7/2017 8:57 PM (GMT 0)

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
Posted 12/7/2017 9:39 PM (GMT 0)
@Girlie

Yes, Dr M the bart guru. He's technically in Maryland
Posted 12/7/2017 10:06 PM (GMT 0)

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
Posted 12/7/2017 10:47 PM (GMT 0)
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
Posted 12/8/2017 2:07 AM (GMT 0)

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.
Posted 12/8/2017 2:35 AM (GMT 0)
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
Posted 12/8/2017 3:19 AM (GMT 0)
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
Posted 12/8/2017 4:06 AM (GMT 0)
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
Posted 12/8/2017 2:17 PM (GMT 0)

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
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