Bartonella

Hey jamisstar! Welcome to the forum! Sorry things have been so awful. It looks like a lot of people are giving you good advice. With regard to benzos, I have to take a small dose of klonopin to travel. Even with that small short term dose I sometimes get a mini withdrawal when it wears off. Sometimes when it's tough I take some taurine to help. Taurine is a natural gaba agonist, I think, but people don't seem to be freaked out about it being potentially harmful. So I don't know if it's "good" advice but I do find it helpful sometimes when the klonopin is wearing off.

Hi barely ,
I am absolutely hysterical crying . I feel so alone ? Like I , been going through so much . That no one in my family belives that this can be herx ? Except mom : I am going through both for sure . Bart . And also the meds . But I started feeling like this when I added rifampin . So it’s prob just both . I did take a clonidine cause I had in h house to see if it can calm me down . I can’t take benzos . It helps some but for me put me in tolerance withdrawals and I had to taper it for over a year . So my brain has bind . From it . My nervous system is an absolute mess 😢. Never had health issues before this 2019 . And waited way too long for the proper treatments . I was on courtem for a bit for babaesia even though my igenex test said I didn’t have it ? And the dr waited so long before he was going to treat my bartinella . I don’t know about vibrant lab ? Do u know anything about that ?it’s said I had all 3 things . But igenex did not ? It’s so very confusing. But I am hysterical . Crying . To the point that just all this trauma w the past 4 years . Of not knowing what’s what and if I will ever get better ? Becaise I couldn’t tell back then what was what . How ever I have been sick for 4 years . I want to push through this so bad . So so bad ! I am scared and these symtoms are so overwhelming . And now have bunring again . So I don’t know . ? Thank u for ure support . Eveyone on here has been very helpful . I am just torn between what’s happening . . Do u take binders of u are on bwmzos ? I can’t take that because of the ssri I am left on and tapering

Someone can please help me . I am over the edge frustrated w these symptoms . The worst of my sxs is this nerve Pgad . I had this for so long for the 3 years of being sick ? But also like I have mentioned had to come off many meds . That affect the cns . It’s not just the Pgad ? It’s the nerves burning . It’s burning in my head in my skin and muscles and joints . So it’s not Pgad that’s from injery or birth ? I just don’t know which it’s coming from ? And I feel so like offing myself ! I don’t ever want to die ! But I can’t take these symtoms . And I feel so alone right now . I am single right now . And I am not myself at all . Don’t like being around people that don’t understand? But I miss them also . I’m in toeuble

Thank u . I am hystery! Cause I feel like I have wds . I feel like when I stopped the gabbapentin this got so bad ! So so bad . I had to come off many meds . So my cns os very sensitive . And it’s confusing to not k ow what is from what ? Cause they both mimic eachother . Yes . The really do . So . I had long term issues coming off benzos . It took me 14 months to taper benzos / and I had problems w an ssri . And now I am tapering that again very slow : this is all maddening . Cause I def know that when I was in bad wds I had burning and aches and all this also . I don’t know what to do anymore . It’s 5 days now off the gabbap. And I def feel the wds from it . Making this worse . I just can’t take much more . I feel like I have just been through just way to much . Between having to come off multiple long term meds and having bartinella at same time ? Amd not knowing what’s what . Is beyond maddening . And I have separated myself from my family and friends cause they don’t understand wds and they don’t understand this disease . No I don’t belive I have mast cell . Not to familiar w it . ?that scared me to hear about that girl . Also I don’t know how to post my thyroid . Tests .? Is there a way I do it on this site ?

Ok , I took ure advice by also joimg that support group . Breaking bartinella . Jeez ! I seriously am very sensitive to meds phyc meds . I know o keep saying that but this is def brought on lore by the gabbap . Amd prob a bit of herx .
I appreciate u : thank u for the support
Best
Jami

The only benzo I take is klonopin, and i take it for nausea when I travel. Sometimes magnesium spray helps calm my nervous system. My gaba/glutamate ratio is really bad and my right eye vision is terrible leaving me functionally blind with light sensitivity when it was at its worst. So I tried a number of things that encourage the gaba side of the balance. I think I suffer from excitotoxicity. I do my best to avoid benzos if I can.

I'm sorry I haven't been able to read all the advice, but have you talked to your doctor about maybe starting at a lower dose of rifampin if the current dose is causing such spectacular herxing? Everything gets worse for me when I herx. Does your llmd have any thoughts on how to help with your neurological symptoms? Maybe even non binder detoxers? I'm not really familiar with things but I feel like people have mentioned herbals to calm the system, maybe ask your llmd if there are non pharmaceuticals to help calm your system. If your llmd doesn't want to treat your neuro issues, maybe ask them to recommend someone who can.

A lot of people do get better, even from quite spectacularly bad places. There was a guy in my support group who had his last rites read to him several times, but then maybe a couple years later was a healthy fireman. Another girl I know was such a mess she was using an epi pen every day and screaming in so much pain the neighbors would call the cops thinking someone was being assaulted. She's healthy now coaching softball and working at a doc office last I heard.

Your family sounds a bit like mine. Only my mom has always supported me. The rest of them refused to believe I was ill at various points some still refuse to believe in diagnoses they don't approve of. Several years in I was also diagnosed with a more "acceptable" illness, mitochondria disease, so now family at least admits I'm sick instead of just yelling at me to get up and try harder. It can be a very lonely road to go down. I tend to be pessimistic but I have been surprised. Attitudes in my family have changed for the better, not quickly, but they did change for the better.

I can definitely understand the panic over the unknown. Questions like will this get better? How long will it last? Will it get worse? This illness can be an endurance sport. I've found in my life, each time I had these thoughts, that I did manage eventually to find a way to cope. The things I thought were just unacceptable or unlivable either went away, or I found ways to live with them, so scary terms like "unacceptable" or "unimaginable" just weren't true.

A friend of mine sent me a magnet with a Winston Churchill in the earlier years of my illness, "if you're going through hell, keep going." I've found many writings by world war authors and works written about that time helpful in learning to how to cope with extraordinarily difficult circumstances many of us find ourselves in. They found extraordinary purpose to enable them to go on despite many terrifying things. For me, my faith gives me purpose. I can rest knowing that whatever happens, I am serving my life's purpose, and that one day, no matter what I do or do not manage to accomplish, all things will be put right again, and I will be happy to have been a small part of working toward healing the world.

Awe. Bailey that was so sweet what u wrote . I understand all of what u are saying . It’s really so hard to go through these things . And what u went through w family like o said is very much like me . I am 46 . Before this I was acting and singing and modeling . And bartending . And living life . To the fullest . Dating . And then bam ! Life cake to a complete stop ! I had elective surgery . And then got sick from the breast implants 😳. So I took out . And then I had gotten sick . And Mabe my Lyme was coming out from stress from Covid . But I got real sick . And then the rest is history . 19 years of no symptoms? Hardly . Until a rescued cat 🤷‍♀️. And bite ? How I’m the world I got Bart. And had Lyme flare up again ? I have no idea ? Extreme stress ? But then a severe cat bite . From a sick cat . Yeah , this is my life story . But I don’t know what was worse coming off those horrible meds or having this ? Both seem brutal . And similiar . I guess I will have to wait and see what happens. Very frightening. It’s nice to hear people have come out of this .! I have a lot of herbs I’m taking . Core dandi blend . Houtyuanna omf can’t spell that . Burber p . My llmd . Knows her stuff . She just doesn’t understand that I couldn’t take meth blue cause of the ssri I take . And can cause seratonin syndrome . And she said no . And I’m like no way . So she’s great at what she does ? But , doesn’t know meds like that ? She worked under dr Richard Horowitz. And knows a lot . But again not really w some meds . Anyway , yes , I pray this too shall pass … very soon ! And now have to get through this gabbapentin wd . Not sure how long that will last now 😢thanks again Bailey . Be well . Talk soon . Thank u ❤️‍🩹

No it means withdrawels . Sorry . I’m used to worrying that w the benzo fouims

That's hard and understandable. Please don't worry about it.

I gathered from the way you were typing there was some kind of issue going on. I know that these withdrawals can cause seriously intense neurological dysfunction.

Do you have the thyroid results? If you could post them here, I could ask a member to help you out with them?

Sorry about your sister. I hope she'll understand. Don't be disgusted with yourself. This isn't your fault. People don't ask to be sick like this!!!

There's a million and one different things I'd rather be doing - than stuck at home watching the world turn and feeling alienated from it because of my health. I imagine that's how you feel to some extent too.

Post Edited (fergleman) : 6/14/2024 5:32:40 AM (GMT-8)

Jamistarr - here are instructions for posting an image taken with your phone of via the PC etc

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Thanks Bailey , I’m on Long Island ny . Not too far from CT . I don’t know either which is from what . But I have been told by my Lyme dr that it could be from this . And been told by my other groups for the meds that it could be that 😩. I guess only time will tell . I hope when I get better that the Pgad goes away . It seems so strange that it happened 3 years ago when I came off lexipro the wrong way . To fast . But then came off 4 other ones through the years . Ugh ! And have had this tbd for a while also , this dr sculz from the nycim he said he got rid of my bartinella and Lyme ! Lol . I paid 60,000 dollars and now I still have this bartinella and who knows if the Lyme is an issue . Igenex says no .) I had one band 23 that was ind . So I have no idea . As far as the estrogen . I have to go take a new test Monday for my estrodiol and progesterone and a few other things : it’s very confusing because all my tsh is normal and so is my t3 and t4 . ? So I wonder just like how is anyone supposed to know anything ? If these tests aren’t accurate? My llmd . Said she will address my thyroid after we peel the layers away . ? So , I don’t really know . U can email me anytime : . Or if u have fb .

. Thanks Bailey . How are u feeling these days ?

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Post Edited By Moderator (Girlie) : 6/14/2024 12:48:42 PM (GMT-8)

I am reading on quora . And I am freaking out . That people are saying that there is no cure for this disease and who ever says there is is lieing . And that it’s not treatable only to come right back ? Is this true . I am having such a hard time w this . I am so so scared . I’m so frightened of having these symptoms for the rest of my life like this . Dibilitated . Cause now the symtoms are so bad while treating . I’m having such bad health anxiety . And I did not go to my sisters bday . Dinner . I couldn’t. So how does that look that I have bartinella and she has stage 4 cancer and I could not go ? 😢this is unreal .