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Posted 6/16/2022 5:38 PM (GMT 0)
about a month ago I stopped disulfiram due to causing horrible skin issues(acne on chest, back and neck with white solid core) Then about a week ago my doctor told me to go back on minocyline, clindamycin and bactrim.

My back and chest is clearing up. My neck unfortunately is taking longer to clear. My skin normally heals quickly but every little scrape to my skin since about month five of disulfiram (I did 9 months total) is causing purple scarring. My legs are blotchy,mottled red and purple with some bruising.

Now I have bad skin and my air hunger has come back...best of both worlds 🙄 My air hunger is accompanied by a tightness in the chest and sometimes I get anxiety too. The air hunger started like a day before I started the mino,clindy,bact combo so its not them bring it out. However I do feel like it is worst now.

I have treated lyme, bart and babs back and forth for the last 5 years. I guess I need words of encouragement and thoughts as to what is happening to me. Any suggestion?

Also I started byron whites detox 2 clay about three weeks ago to remove mold in case that is an issue. Any other suggestion for mold detox just in case I have that too?

Post Edited (Wisco woman) : 6/17/2022 6:08:41 AM (GMT-6)

Posted 6/16/2022 6:35 PM (GMT 0)
Oh I also forgot to mention that for the first time in all my years of treatment that three days ago I got distinguished bart lines...a few short ones on my stomach and two long ones on my arm.

Does bart cause extreme air hunger? Is this all bart?
Posted 6/16/2022 7:12 PM (GMT 0)

Wisco woman said...
Oh I also forgot to mention that for the first time in all my years of treatment that three days ago I got distinguished bart lines...a few short ones on my stomach and two long ones on my arm.

Does bart cause extreme air hunger? Is this all bart?

Air hunger is signature for Babesia.
BUT I think these infections can overlap re: symptoms.

Wouidnt hurt to do a few months of Babesia treatment.
Posted 6/16/2022 7:16 PM (GMT 0)
I agree with Girlie, there is some overlap.

I've had air hunger but I don't think I have Babesia. I think it's just from my body being exhausted and then I start breathing heavy.

Skin issues sound like Bartonella.

Hang in there, we will get better, you're not alone!
Posted 6/16/2022 7:19 PM (GMT 0)
I'm sorry you are struggling. A few things I thought based on your post.

1. Acne: This seems to appear during treatment at times. For myself, it seems to be appear when I'm feeling flared/herxy. I'm not sure of the mechanism but I've never found it to be anything dangerous. Of course, I understand lots of acne can be embarrassing for a person.

2. That's interesting about the purple scarring. I haven't heard of that before. What did your doc say about it?

3. You can get at-home tests through your doctor that can check for mycotoxins. Certain binders are correlated with certain mycotoxins. You could try living somewhere outside of your space for a week to see if your environment is contributing to your illness.

4. I would caution as interpreting a stretch line here and there to Bart striae. If the striae is related to Bart then they should be coming and going consistently throughout treatment and flares. Personally, mine seem to appear when I'm feeling more symptomatic and more inflammed. Straie appears of my back and butt, but I've seen where they can appear on the stomach and arms. I'd keep an eye on it and try to look for patterns.

5. Air hunger can be a Babesia or Bartonella symptom.

6. Have you tried switching doctors? Getting a new perspective?

I understand your frustration. In a month I'll be at the 7 year anniversary of the tick bite that started my illness. I wish I had answers for you. I can only relay to you that I understand your struggle. You aren't in this alone. Keep hanging in there!
Posted 6/17/2022 12:12 AM (GMT 0)
Thanks everyone.
Girly,
I've done babesia treatment in the past with malarone at one point and mepron at another. And my doc tells me the bactrim and clindamycin im on right now should fight both bart and babs...idk im so sick of guessing. My air hunger straight up went away on disulfiram...disulfiram is suppose to go after more than just lyme and babs. Maybe I have a fungus or parasite that is causing it idk.

Lymie,
2. My doc didn't say much about the neck acne and scarring. It happened to me back in the summer of 19 as well. I forget what I was on then.
3. I actually have been living somewhere different already. I recently moved into my mas place due to a recent break up...im trying to not let the stress of the break up bring down my health.
6. I have tried switching docs. Im actually back to my original after trying a different guy for two years. I thought about going to a local holistic practitioner though.
Seven years, ugh I'm sorry. Do you feel like you have made progress since the very onset of symptoms?
Posted 6/17/2022 12:45 AM (GMT 0)
The disulfiram probably brought out the bartonella. Usually when bart attacks the red blood cells and I get air hunger I would also get dark urine (bilirubin). The skin rash is probably bart too.
Posted 6/17/2022 1:40 AM (GMT 0)

Wisco woman said...
Thanks everyone.
Girly,
I've done babesia treatment in the past with malarone at one point and mepron at another. And my doc tells me the bactrim and clindamycin im on right now should fight both bart and babs...idk im so sick of guessing. My air hunger straight up went away on disulfiram...disulfiram is suppose to go after more than just lyme and babs. Maybe I have a fungus or parasite that is causing it idk.

Lymie,
2. My doc didn't say much about the neck acne and scarring. It happened to me back in the summer of 19 as well. I forget what I was on then.
3. I actually have been living somewhere different already. I recently moved into my mas place due to a recent break up...im trying to not let the stress of the break up bring down my health.
6. I have tried switching docs. Im actually back to my original after trying a different guy for two years. I thought about going to a local holistic practitioner though.
Seven years, ugh I'm sorry. Do you feel like you have made progress since the very onset of symptoms?

My symptoms have seemed to get somewhat to quite a bit better during therapy depending on the therapy I'm on.

A clear pattern has been improvement during treatment but then a hard relapse when off treatment. I think we might have similar experiences. The best thing I've done is Disulfiram, but only a month or two after I weaned off of it I relapsed hard. I thought I was dying. It is odd, but like Quin said, it seemed to bring out Bartonella like symptoms. In general, I would say that when I do make progress it is slow and when I stop a protocol I relapse hard quickly.

Currently I'm with Jemsek's clinic. I'm just now about to start the Babesia phase of their program. So far I have not made great progress, but I have made some strides with the heart issues and the nervous system (internal tremors/insane anxiety) so I am extremely happy with that.

Sorry to hear about your breakup. Stress seems to be a killer for this disease. I don't know how we are supposed to function. As soon as stress gets to me my symptoms go wild.

I asked about doctors because I think sometimes it's worth getting different perspectives and treatment strategies if your progress is stalling with your current doctor.

How long have you been treating with your current doc? No progress at all?
Posted 6/17/2022 5:20 AM (GMT 0)
Lymie
I started treatment with my current doctor in jan of 2017. Then from jan 2019 to June 2021 I tried a different doc because he had some alternative treatments. After I saw little results from those treatments and he refused to let me try disulfiram I switched back to my old doc in June of 2021 and have been with her since. I would try a third opinion but you know how it is. First you're on a wait list. Then the initial start up cost of each doc is crazy expensive.

Over the past 6 years I have seen progress but its been not only slow but a two steps forward one or two steps back process. While I used to have around 30-40 symptoms I now only really have 5. The air hunger is the only one that is preventing me from living my life. The other remaining symptoms are mild for me.

Disulfiram worked really well for me too. If it didn't make my skin so god awful I would have stayed on it. But yeah shortly after stopping disulfiram the air hunger came back.
Posted 6/17/2022 11:03 AM (GMT 0)
You could try valproate instead of disulfiram, but it will do the same thing to bart. I just did a round of that, and had no bart symptoms, and then a few weeks later... boom, bartonella. Now taking minocycline to get rid of the bartonella.
Posted 6/17/2022 12:06 PM (GMT 0)
Quin,
When you say a few weeks later do you mean after stopping the valproate?

So is valproate suppose to kill lyme and babs?
Posted 6/17/2022 12:38 PM (GMT 0)
Valproate (or divalproex) has a somewhat similar chemical structure to disulfiram, but without the sulfur. I took it to kill borrelia. It has a similar effect as disulfiram on bartonella, makes it flare up. The skin rash you got was probably from bartonella, rather than a direct effect of the disulfiram.

What happened is that I was taking this and it stirred up some bartonella, which I didn't notice at first, but a few weeks later when I was off all antibiotics I got bartonella symptoms.
Posted 6/17/2022 12:41 PM (GMT 0)
Has valproate ever been researched for lyme, bart or babesia? I have never heard of valproate before.
Posted 6/17/2022 12:52 PM (GMT 0)
Valproate has been researched for various infections, mostly toxoplasmosis. I took it for lyme because it seemed to work and I couldn't tolerate disulfiram so I needed an alternative.

If you're having difficulty tolerating disulfiram, it's worth a try, but if you're getting skin rashes, your problem is likely bartonella, and not disulfiram per se.
Posted 6/17/2022 9:13 PM (GMT 0)
Quin,
Maybe that was my problem. Maybe I could have stayed on disulfiram if I were also doing a hard core bart treatment with it. I was taking bactrim and clindamycin on and off while on disulfiram but I think that was it.

I'm gunna get the skin cleared up and maybe consider disulfiram again if my current bart and babs treatment doesn't also clear up the air hunger.

I dont know about valproate because like you said it would prob also bring out the skin issues if they are indeed bart related.
Posted 6/18/2022 1:11 AM (GMT 0)
I've found it not that hard to kill bartonella when it's in its active state. Minocycline once every few days was enough to keep it under control. It only relapsed significantly when I was off all antibiotics for a week.

Do you think your bartonella was resistant to bactrim and clindamycin? It can be resistant to a lot of things, but those are usually considered some of the more effective treatments for bartonella. I've also found that atovaquone (mepron) has little effect on bartonella by itself, but seems to interfere with its resistance to other antibiotics. I herxed a lot more when I combined abx with mepron. It's a little pricey though.

There was this thread about trying to overcome the antibiotic resistance of bartonella:

https://www.healingwell.com/community/default.aspx?f=30&m=4289600
Posted 6/18/2022 1:17 AM (GMT 0)
Oh Quin I forgot to update that last thread, I had no benefit from taking metformin for Bartonella or Lyme so I stopped. Might work for others though.
Posted 6/18/2022 2:11 PM (GMT 0)
Thanks for the metformin idea Quin. I've never heard of that before. Clindamycin and bactrim worked really well for me a few years back and that's why my doc put me back on them. But you're right, my bart might be resistant to it now. This time I've got mino in there with them so hopefully that helps. I also have rifampin I could add in there if I'm feeling up for the challenge.
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