HealingWell
Search Close Search
☰

Bartonella vs stretch marks

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
1 2
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/27/2015 10:45 AM (GMT 0)
Yeah, my personal understanding of Lyme, just after having read and watched so many diffrerent things about it is that "Lyme" is Bb specifically--a common name applied to one specific bacterial infection that was discovered in Lyme, Maine.

The sticking point and complication being all the research that has followed: Lyme (as in Bb) often/usually is accompanied by coinfections such as bartonella, babesia, and perhaps even other pathogens that may be "bartonella-like" in the way that Lyme is "syphilis-like." And the difficulties being that 1) science doesn't know very much yet and can only make incremental progress as new details are discovered, but that 2) progress is limited by the weird political maneuverings--and people end up suffering as a result. I agree: I wish they would just label all these things as Lyme, a complex grouping of pathogens that requires a great doctor-detective to suss out.

But then we come to the CDC. I could go on and on about all my questions about the CDC...I have many. My life was turned inside out last fall because I was randomly selected for a census/cdc health survey, and because of a friend's warning about its invasiveness, I asked to opt out. The survey was voluntary, supposedly...I actually recorded the conversation, which became mind-blowingly weird, with all kinds of veiled threats, and I ended up petitioning a cdc board of ethics to intervene and make the census workers stop harassing me. It sounds crazy and it was and at the time it made no sense to me--and now all I can wonder is if they were so aggressively insistent on interviewing me about my health because someone somewhere may have known I have this disease, even before I did.

If you have 15 minutes to kill and you're willing to listen to a truly bizarre conversation, I'd encourage anyone to do so: http://youtu.be/-9nabn9wcc4

I posted that conversation online as a safety net because I felt like the cdc/census person was stalking me and making veiled threats, and I knew that if I simply told people about it, I would sound crazy. After I did post it, another census rep called and was even more aggressive and essentially told me to keep my mouth shut.

And all this happened during a time when I was having a symptom flare up and lots of preexisting related anxiety. Totally turned my life into a shambles for a good month.

I took this into a crazy tangent. I'm sorry. All of it is to say that I never thought anything about the CDC other than that it is a federal arm with an interest in maintaining public health; after they forced themselves into my life in this way last year, I became confused and afraid of the organization. And then I read about their position and their denial of Lyme and persecution of doctors who treat it, and doing more research realized that the cdc itself administered the Tuskegee experiment (which I had never realized) for decades--so all ethical and moral credibility is out the window.
Posted 6/24/2015 1:18 PM (GMT 0)
Hi all...checking back in. I began my treatment for Lyme and bartonella back in March and I have a few updates...

First (and mostly) the good news: Overall, I feel MUCH better--or at least I have for the past several weeks. I've got a lot more energy, generally speaking, and I even managed to spend an entire day moving (doctor's orders because of black mold in old apartment) and 13 hours straight the following day unpacking and organizing without collapsing. This is a radical change for me; on Christmas day, after opening presents with my family, I literally collapsed early in the afternoon and was in bed for 24 hours, just exhausted. So that's great.

Lab-wise, my c4a complement has improved *a lot* as well. Back in March, the level was 19,800 (with normal being 0-2,800). My c4a from a couple of weeks ago came back at 1,081...!!! Totally normal. My immunoglobulin e wasn't tested back in March, but the same blood draw a couple of weeks ago came back at 171 (normal = 0-114). Hopefully, moving away from the mold exposure will help to lower that.

So I am feeling much more energetic and have much less pain. I worked out two days ago and again this morning, and so far I'm not suffering horrible consequences as I have the past few times I've tried to get myself back in shape over the past year. I am, however, very weak, but that's to be expected after months and months of total lethargy. I still have the odd symptom here and there...neurological pain, tingling, numbness, and tremors, mostly, and often foot pain when I walk. And then there was the big one that kicked off this thread in the first place: my skin.

I've learned since March that sugar is my enemy. When I eat something sweet, all my 'stretch marks' burn and itch for at least a couple of days afterward. I never noticed that correlation before, but I never really watched my sugar intake that much before--calories yes, but not sugar. When I'm not eating sugar, the skin seems to be more or less painless (again, an odd zap or itch here and there). However, the overall inflammation has not changed at all--everywhere, not just isolated to the stretch marks--any slight abrasion causes my skin to break out in hives where I was touched. This made me look quite beastly during the move this past weekend, as I was red and bubbly all over my arms the whole time.

When I first posted the question about whether the stretch marks/bartonella rashes really could go away or improve significantly (my LLMD says they should), Traveler said that they probably will, so I wanted to check back in with her and/or anyone else. Mine have not changed in appearance at all. I've been medicated since March and it's now the end of June. I know treating Lyme and coinfections can take a very long time, but I'm just curious if anyone recalls how long they were into treatment before they saw improvement.

I was initially put on minocycline, biaxin, and bactrim, but I had a terrible immune system reaction to the minocycline and stopped that. Went back to my doc last month and rifampin was added to the mix--so I take rifampin, biaxin and bactrim on weekdays and flagyl every third weekend.

So the bottom line is that I feel much, much better overall (the most important thing!), but I still look like a leper because of the shoulder-to-knees stretch marks/rashes and I'm still praying that they will improve with treatment. If not, it's my cross to bear and I can make peace with that, but I'm still praying...
Posted 6/24/2015 8:16 PM (GMT 0)
Oh my!! "They are going to keep sending people" "they'll keep bugging you" - even though you say you don't want to participate? Where's the voluntary part???? Talk about using pressure!! He sure likes to throw around his 'supposed' title though!!

I think I would say "I don't want to answer" to every single question then. I'm so very sorry for what you had to go through with the CDC. I guess it's the future since so few fight it. I double dog dare them to call me. devil Yeah, come on down to MY house!!!

Have you heard more from them???

As far as your stretch marks that itch when you eat sugar - this can indicate candida. Have you been evaluated for this possibility? Just a thought as I'm far from an expert on any of this. Just throwing out thoughts here.
Posted 6/24/2015 11:30 PM (GMT 0)
Hi AL,

I hope you like your new place.

I'm happy you're making progress and hope you continue to do so!
Posted 3/23/2017 2:59 AM (GMT 0)
Not sure if this is too late to respond-2 years later! ha! However, I hope you've tried coconut oil pulling for oral fungus, and or Periobrite. And coconut oil for scars. smile
Posted 1/24/2021 10:27 PM (GMT 0)
American Lymie, you are me!! Your description of your scars, how you feel, negative tests, thinking you have connective tissue disorder and lupus....It's all me!
How are you? Have you found any answers?
Posted 1/25/2021 12:31 AM (GMT 0)

Marciep said...
American Lymie, you are me!! Your description of your scars, how you feel, negative tests, thinking you have connective tissue disorder and lupus....It's all me!
How are you? Have you found any answers?

Hi Marciep - Welcome to the forum.

American Lymie hasn’t been on the forum since 2015.
But they have an email listed in their profile - you could try contacting that way.
Posted 1/25/2021 1:02 AM (GMT 0)
Thank you. I'll look into emailing.
Posted 1/25/2021 2:03 AM (GMT 0)
Welcome, Marciep! What this sounds like to me is Ehlers-Danlos, including the common Ehlers-Danlos symptom of MCAS. A geneticist can test you for it. Hope you get in touch with the original poster and/or find some answers!
✚ New Topic ✚ Reply
12