posted
I've been on the MB for Bart now close to 1 month.
How was everyone's experiences with herxing, seeing improvement, etc?
I know everyone is different Just having an absolute hard time right now.
The first week I was on 50 mg 1x. Starting week #2 I was told to double it. Been on the same dose since and Crypto-Plus as well.
I see my LLMD for a f/u in August.
Thanks 💚
Posts: 597 | From Massachusetts | Registered: Mar 2019
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Maybe this can help answer some of your questions.
Go to the ‘search’ function located in the middle of Lymenet’s home page. Type in Methylene Blue. Then type in Medical under the forum. There are 2 pages of posts.
I tried to post the search results for you but wasn’t able, sorry.
Posts: 2977 | From Florida | Registered: Nov 2016
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Yea I do that alot when searching for particular topics. I've read every post on the MB ones on both pages. That's why I was seeing if anyone had anything more they could add.
Thanks 💚
Posts: 597 | From Massachusetts | Registered: Mar 2019
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posted
i am taking it alongside bart and lyme herbs
i could only do 25mg a day initially - it caused herx like reactions and pains in lower arms and legs and increased in fatigue - but have gradually built up to 100mg a day ( 2x 50mg ) and am tolerating that fine.
also taking ivermectin as an immunomodulator and LDN for similar reasons
making progress slowly - and am best i have been in 6 years
Posts: 245 | From UK | Registered: Feb 2020
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we all carry a mixed population of persisters and growing forms and each bacterial cell can switch between the two states so you really need combinations to treat the two together.
some LLMD's like marty ross say that MB can be combined with bart herbs = typically Sida acuta and Houttuynia ( ie buhner bartonella herbs ) which is the approach i am trying - but i may well use azithromycin or clarithromycin alongside all of the above for this reason also.
just passing info on
all the best with your progress
Posts: 245 | From UK | Registered: Feb 2020
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It's been rough, I'm talking more so the mental and emotional stuff. Sometimes I dont even know if its the Bartonella and/or the die off doing it, or some non lyme related stressors in my life that for anybody ( not chronic ill) would be difficult but when you're sick it makes things 10x harder to grasp and cope.
I don't know what's normal anymore. I feel as though I'm getting pulled in many different directions and don't know if I'm doing anything right in treatment.
Every patient is different and responds to different protocols, what might have worked for you might not for me. That's the complexity of this disease. It's gamble trying new things or changing up a medicine.
I've never been so frustrated in my life.
Like I mentioned I don't know if I'm doing this right, if there is something better for the Bart or I give the MB more time and a chance.
Anything in life, I feel like an absolute failure everyday and everything is my fault.
Do I try and add in abx again, add another herb or what. It's getting expensive my insurance denied my MB claim, possibly more documentation.
My anxiety/ocd is through the roof and now I'm having it at my job. My job was my escape, a nice healthy distraction and still is but now I can't even relax there.
I'm supposed to be going away for the holiday weekend and I just can't feel it.
Happy 4th to you and everyone else.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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i am on my own challenging journey with both illness, loosing my job and now my relationship, and understand how hard it is to find the right path.
indeed what works for me may not work for you.
i do think there are general rules that we can follow that give us the best chance of finding what will work for most people though.
eg if both the published science and clinical use experience of the best LLMDs says something seems to work best - that is typically at least a good starting point.
but you may still need to adapt from there - for example - in my case i was simply not able to tolerate any of the full strength bart herbal protocols - eg buhner - but i did notice i did feel better afterwards.
so i have had to start with low doses and build up very gradually - over the course of 12 months -i am now taking 20x my starting dose and managing without severe herx - and this seems to be helping as the last 2 months have been the best so far.
i looked at the crypto plus product - it doesnt look bad and i think cryptolepis in particular is a good antibacterial herb - but the doses seem small compared to tinctures. so i would be concerned if it is enough on its own
it might be enough for now however as - it could be like me you cant simply load everything in at once.
if it were me though - i would make a plan to combine it with other bart herbs or bart antibiotics if it is bart you are treating.
treatments are not static in my experience - more a learning curve
try not to second guess yourself in the meantime
just make a plan based on what works for most people ( use the best LLMDs as a guide as they have each treated 10,000+ so horowitz, marty ross, steven phillips, burrascano etc - and you will not go far wrong - avoid fringe theories and or therapies - at least until you have thoroughly tried what works well for most people) stick with it for 2 months - then review where you are at
diet is huge too
sorting that out changed my future completely in under 2 weeks - better than any antibiotic or herb so far.
good luck!
Posts: 245 | From UK | Registered: Feb 2020
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posted
As I said in a previous post, I really believe treatment ruined my life at times and I regret doing it. It may have given others there lives and dignity back, not me.
There's been a domino effect of hardships that have occurred, whether treatment did this or not but all seemed to happened the same time I got diagnosed and it's one thing added to another.
Sometimes I really think this feeling will never go away, or it will but not for a very very long time. They say pain is only temporary. For myself happiness, relief, relaxation, energy and contentment has been temporary.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Mountainsky
Sorry to hear of your struggles and thank you for asking about me.
I stay in the battle and refuse to ever give up. 3 MAJOR life events in June. Push through.
If I could give ONE word of wisdom. . . PATIENCE
Lyme and company takes ALONG time to heal from, regardless of treatment protocols.
I loved cryptolepis plus. Within 3 days, no sweats, no crying, no mood swings. It was amazing !!!!! Within 3 months, it didn’t work anymore. These bugs adapt somehow. I got back on Mepron and Malarone and it worked. Still occasionally flare, I won’t lie to you.
Please listen to your LLMD, that’s why we pay them the BIG bucks. Try to relax and look at the BIG picture. We are trying to get our lives back and will do whatever it takes to get there.
Stay in the battle. You can do this. 💚
Posts: 2977 | From Florida | Registered: Nov 2016
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I mentioned this to Garz in another post. I sometimes do not believe it's all Lyme and Cos. I believe there are other things going on, sideline and backstage issues that are only exacerbating this disease.
Its a viscous and exhausting cycle.
Have a good 4th to you Bonnie!
Posts: 597 | From Massachusetts | Registered: Mar 2019
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posted
What's strange too, MB can lesson and improve memory loss, depression and bipolar symptoms....mine has been the exact opposite. So What's going on then?
Posts: 597 | From Massachusetts | Registered: Mar 2019
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May I ask you some questions as I am presumably struck by bartonella myself?
How are you doing now? How have been (self)diagnosed with Bartonella? Did you suffer from fever of unknown origin and experience bad days every 4 to 8 days?
Greetings and the best for 2022 from Rotterdam
-------------------- Hank Timmme Posts: 3 | From South Holland | Registered: Dec 2021
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posted
@Mountainsky, thanks for this thread. I am two weeks into treatment for bartonella and my anxiety is out of control. I know it's not real, but there it is.
-------------------- Lyme by Igenex 8/2009. Sx of coinfections but no positive testing. Aspergillus by Mosaic Dx 9/23. Posts: 28 | From Seattle, WA | Registered: Jan 2010
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