Topic: has anyone had to take breaks from babs treatment?
Maya12
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i have been on babs treatment now for 15 days, i was doing okay with it at the start and even feeling slightly better but for the last three days have been feeling horrible.
i feel very out of it and disconnected, anxious, depressed and emotionally flat and sad.
i know about the mepron blues but can babs herxes make you feel this way
also have others had to stop the babs meds for a few days and if i stop the meds will i hopefully feel better?
did anyone else feel a bit better after stopping the mepron and zith for a few days and then slowly restarting?
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Maya12
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i have also been getting a lot of body pain and abdominal pain since starting these meds, does anyone else get this?
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Maya12
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Anyone?
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desertwind
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Yes, I had done that numerous times and it actually helped me to stay on long-er term.
I would take a couple of days off when the herx got too bad. Then I would go back on for as long as I could.
I had to stop my babs meds about 6 weeks ago due to raised liver enzymes and knock on wood..I am not having any babs symptoms. Mepron is heavy duty and even if you do not have babs it can cause you to feel bad.
I know alot of people would say not to go off of it but for me taking a day off here and there is actually what kept me going in the long run.
And yes, I had horrific body pain - like I had deep flu like pain in my entire body.
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Maya12
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Thanks desertwind I appreciate your answer, has anyone else had the above mentioned symptoms worse with babs herxing?
Are these symptoms normal for babs herxes?
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yes, for some reason i only last through week four on mepron. then I have to go off due to horrible depression, pain and crushing fatigue, so im taking a break and doing artemesinin.
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desertwind
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I can say for sure that Mepron caused /es a lot of emotional sx. I think it is both a side effect of the med as well as a babs herx.
I had a really hard time with it in that sense.
It would lift after about 2 days off and then creep back the longer I was on it.
The emotional part is really really tough...I certainly can relate. This is tough stuff to go through.
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Maya12
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It sure is and desert did you ever feel really out of it as if nothing around you felt right or normal? Like a form of depersonalization?
And if he Mepron causes so many emotional issues how do you know you are killing babs if you never really feel better?
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philly78
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I'm treating babs right now but not with mepron and I'm experiencing the same thing.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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Philly what are you taking for your babs treatment?
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philly78
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MC BAB2, artemisinin essentials and I'm on alinia fr something.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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Maya12
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hey philly thanks for letting me know that, if you are feeling the same way and not on mepron then likely it is from the babs herx, hope it passes soon for you
do you feel really anxious and messed in the head and confused too?
keep fighting i dont know how but i keep doing that this disease really sucks
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Jamers
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Me too... I've been on Mepron 5 weeks. I also am getting pressure headaches once again. My neck and shoulders are killing me. I have mood swings, depression and some anxiety.
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Maya12
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Hey Jamers I know you were feeling crappy a while back did you feel better at all or just crappy since you started the Mepron?
And does anyone ever feel really out of it and kinda psycho on babs treatment?
This is so tough, when does it ever get better?
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gmb
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Jamers... yes shoulders, agree. Through allof my original Lyme arthritic symtoms I vever had shoulder pain.
On my 4th or 5th week on Mepron I ached all over and developed "frozen shoulders" that my chiro helped relieve a bit.
Maya12, I've heard thatit take 4 weeks for Mepron to build up in your system. In my first round on Mepron, weeks 4 thru 9 were the worse in my whole sickness.
hang in there. I hope you soon see some improvements
Maya12
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Thanks Gmb, did you have any really bad emotional sx and feel very out of it and almost paycho? I feel like I am going nutts
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gmb
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Yes, I feel psycho-weird most of the time, but my emotions are pretty flat most of the time, with an occational Lyme rage flare.
In June I double dosed Mepron to 2 tsp twice a day. That knocked me for a loop. And I just started feeling a bit more normal at the beginning of September.
Then two weeks ago my LLNP added Bactrim DS back in. Now my head pressue and cognitive skills are in the pits. and my typing s**ks.
My worse symptom though not painful are sponstaneous bruise marks appearing randomly and almost daily on my thighs and arms.
When take my morning shower I never know what to expect. I take photos and document each bruise cause I would never remember all occurance to discuss at next LLNP visit.
Does anyone else get these bruise marks from bursting red blood cells when treating babs?
I have been on Mepron for about 10 weeks now. The first 8 were MISERABLE. The first 4 were bad, then I got a little break then bad again. I've been finally feeling better gfor the last week or so. I really think my babs symptoms are improiving. BUT anxiety is worse. I think that's because my bart is taking over. I really am trying not to give up. I really really want to eliminate one of these damn diseases! And, if I quit, then what? As long as I can function, I am sticking with it. Hang in there if you can!
Jessie
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Maya12
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Hey Jessie what are your babs symptoms
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Maya12
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and what symptoms did you have with the babs die off?
or what symptoms did anyone have with babs die off?
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I am so very thankful for this blog some days. I started treating Babs with Maleprone 6-8eeks ago and it took this blog to put together my symptoms. Terrible pressure headaches,
unexplained bruising and shoulder neck pain!! crazy group of symptoms-
the only thing that has seemed to lessen is some of the anxiety
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Maya12
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do all of you guys feel really out of it too while treating babs, like nothing makes sence and you are totally fogged out mentally and emotionally , don't really feel like you know what you are saying or doing and just feel detached? anyone feel this way with babs treatment?
i am also having a lot of low back pain
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Maya12
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oh and no motivation to do anything and yes feeling really flat like you can't connect emotionally to anything? babs is brutal
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Maya12
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anyone feel this way with babs die off?
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gmb
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Maya12
Anxiety and depression have not been issues. I'm pretty middle of the road all the time except for the Lyme rage which has not been present for some time now.
Round 1 of Mepron was from May 2011 thru Mid-Sept 2011
Round 2 started March 2012 thru June 22, at regular 1 tsp twice a day, then double dose till now with no changes at least rhru th end of next month.
Since I'm also in IV Rocephin I have CMT (for Kindeys and Liver) and CBC every other week to keep tabs on any spikes. An a home nurse comes by once a week to change PICC dressing and make sure I still have vital signs.
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Hi Maya, As far as babs, i have the tippy/drunk feeling. I used to get that A LOT. it seems better. I do still get air hunger, i think that's better but I am not sure because I have serious anxiety and one the the symptoms of tha is i feel i can't breath. i've neve really sweated at night though i still get chills now and then. i also get these waves of really weird buzzy weak feeling. where i feel i will pass out. haven't had a bad one of those in a while. i have lyme and bart still so it is really frustrating because i can't tell what it causing what. i'm sticking to babs treatment for at least 6 months and then only going off when my blood smears are clear. I had a poisitive FISH. once i know i have beat this i will move on to bart. I feel like if i know for sure one is down than i can make better decisions about treatment, you know? last thing i want to do is quit early and then be all confused about what causign what!
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Maya12
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Do any of you guys ever feel really out of it though and spaced and detached?
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Maya12
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Or feel really depressed and hopeless from babs treatment
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Maya12
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Or at least totally unmotivated and not feeling like your self at all
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Maya12
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Hey jess when you say drunk do you mean feeling out of it?
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Maya12
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Anyone
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Maya12
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Does anyone ever feel so out of it too with babs that they have trouble thinking of what to say and talking ?
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yes i am but i started treatment only two weeks ago. that was my main symptom. ten docs and six months later i saw a lld and i'm now being treated for babs. since starting meds all the same symptoms maybe feeling a little mellow, slower or calmer if that makes any sense
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Maya12
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Has anyone else had all these symptoms I mention with babs herxes
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WPinVA
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Maya, I feel for you because I had the depressed, hopeless and unmotivated symptoms too and they were pretty horrible. For me it was a side effect of the Mepron and NOT a herx.
I know what my herxes from babs feel like and they have never involved those symptoms - they involve sweats, feeling tippy, fatigue, etc.
PLEASE call your doctor now. These are serious side effects and warrant a call NOW, even after hours. You may need to stop Mepron immediately. These symptoms lifted for me within two days of stopping Mepron.
If it wasn't for Lymenet, I probably never would have known that this was a serious side effect of Mepron.
I can hear how badly you want this to be a herx and not a side effect but sometimes a drug just isn't going to work for all people. We take so many drugs to treat Lyme and co, that I have just come to accept that not all of them are going to work for me. And don't despair - yes Mepron is a biggie but there are other ways to treat babs. I'm now on Arteminisin and Cryptolepis.
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How can you tell if its a herx or a side effect?
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dbpei
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Maya, I feel for you. I can tell you are struggling with whether mepron is helping you or not. I have similar concerns while on mepron due to my symptoms. I am also taking biaxin (which penetrates the blood, brain barrier), and omnicef.
I have had the hopelessness you describe, but fortunately, it seems to last for a day or less for me. I do not have the depersonalization you describe. Some days, I am sharper and clearer than others. It varies.
I have bad tinnitus that seems to fluctuate now. I will have some good day 'teasers' that keep me hopeful. It seems on the days that my tinnitus is the loudest, everything else seems to bother me more, including depression.
I have had some flu-like mild achy joints, tops of my feet, shins, knees, and strangely, the bones in my fingers often ache. Also some mild shoulder and neck pain. All of these pains are mild and easy to tolerate.
Every day, I have strange 'head' sensations of fluid moving in the area outside my brain, bug crawling sensations, and vibrating feelings. I can tolerate these as long as I know they are a result of herxing or fighting babesia.
I have had the head vibrations since losing my hearing before I knew I had lyme. But the other sensations are new since adding mepron.
I often worry that my symptoms could be lyme or bart or some other co-infection invading my brain deeper as opposed to herxing from babs treatment. I never tested positive for babs or bart.
I did test positive for Rocky Mountain Spotted Fever and anaplasmosis and was treated with rifabutin and minocycline, then switched to rifampin and doxy before starting the babs treatment.
I wish I could help you more. I think we are both in the same boat, hoping and praying that we are treating the right thing.
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Maya12
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The thing is I stopped the Mepron 2 days ago and I still feel really crappy and I don't know what to do
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dbpei
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From what others have posted, Maya, sometimes a break from Mepron is a good thing. Are you able to communicate with your LLMD between visits? If you are, I would try to let him/her know and ask for guidance.
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Maya12
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I have been having horrible sweats too
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Maya12
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Yes I think I will stay off the Mepron for a fewer days until I can email my llmd on Monday.
My anxiety is also horrible and I just feel so out of it and disaccociated I hate it
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Maya12
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I feel like these bugs have totally taken over my brain and I hate it
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dbpei
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I know, Maya. This is an awful disease that requires so much patience and endurance. I have had many days feeling like you. Is there a support group you could go to in your area? It helps so much to talk to others who understand.
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Maya12
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Hey dbpei how long have you been treating and are you starting to feel any better at all
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Maya12
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And how long we're you sick for?
Does anyone have this depersonalization?
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dbpei
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Maya, we think I contracted lyme in the summer of 2006. I had a mysterious summer flu and tested positive on Elisa, but follow-up WB was negative.
After that, I gradually felt better, but had migrating joint and bone pain through the years. I lost my hearing in 2011 and then developed strange head vibrating symptoms.
It took me about 9 months after seeing numerous docs that I found out I had lyme disease. I tested positive on PCR but still negative on WB.
I started ABX in November 2011. I have been on different ABX since then. I started Byron white herbs a month ago with help of LLNP. I am also chelating heavy metals. It is a complicated illness to combat, but I am determined!
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Maya12
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Has anyone ever just felt really out of it and spaced and brain fogged from babs, it is just that detached totally fogged out feeling is this from babs or what causes it? I guess it is like the derealization thing
This would be either before or during treatment
I liken it to being so fogged out that nothing looks or feels right.
As if you are in a dream
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Maya12
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It is almost like really bad brain fog but nothing looks right and feels dream like
Has anyone had this?
By the way the depression and horrible anxiety have calmed a bit so I don't know if that was a really bad herx or what
Do others find brain fog gets way worse with babs die offs
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Maya12
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Anyone else have this?
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Catgirl
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You're not alone. Babs sucks for all of us. It's the worst co infection I have. Have you read up on protomyxzoa yet? The symptoms are similar to babs. Of all the things I've tried for babs, the low fat diet works best.
I basically try to follow the protomyxzoa diet (no arginine--no nuts, eggs, avocados, oils). Babesia like pathogens are sensitive to oils/fats. The goal is to strive to eat 15gm of fat per day (McDougall diet). It's hard to do while still eating meat, so most people go vegan. I eat very little meat, but have eliminated nuts, eggs, avocados and drastically lowered my oils & fats.
I have tried different meds/herbs for babesia, but the one thing that's helped me the most is this low fat diet. My pain is gone. Everyone with babs should try this. You have nothing to lose but pain and all the horrible babs symptoms. Try it.
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Maya yes I have had the de-personalization, not really there, out of body feeling on Mepron. I have been on it for months and it has helped with the babs symptoms. I never know from one day to the next what will be happening.
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Maya12
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Will the depersonalization go away with treatment
And thanks to everyone who responded
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Maya12
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And does babs treatment help with the spaced out detached brain fog and wierdness
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dbpei
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Maya, there is a recent stream from lymenet that might be of interest to you about the spaced out detached feeling being helped by a supplement.
Maya12
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Well I have had my thyroid checked many times and no one seems to think it is a problem, can the infections cause this feeling though?
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dbpei
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Maya, I have read about and talked to many who have had this detached feeling. I have been fortunate to not have this, but instead have had many other unpleasant symptoms including having to listen to nonstop noise in my deaf ear. This disease affects everyone so differently.
If you are really scared about this because it is such a change for you, I would let my LLMD know. But if it is something you have had for a while, I would try to accept that it is part of lyme and co. and it will likely get better over time with treatment.
Wish I could help more. Hang in there.
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Maya, I know how you feel! While I am not better yet i do think the detached tippy feeling is less and less a problem. I almost quit Mepron too but have been sticking with it. I think my bigger issue is now Lyme or maybe Bart. But I am sticking with babs treatment for at least 6 months and until my FISH smeers are clear. It's so frustrating. i know. My current issue is weird headaches that feel like my brain is swollem or something. kind freaking me out but nothing to do.
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so does anyone know if taking these abx "breaks" will increase the chance of abx resistance? starting and stopping, etc.?
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I'm a little hesitant to chime in because your issues seem a bit more advanced, but I was feeling like crap on my malarone, clindamycin combo. Felt unmotivated, depressed and all, so I stopped. It felt better to take a break then I decided to try some st johns wort. That made a huge difference in my well being as apparently I was serotonin deficient.....now I'm feeling much better but not sure if I should restart antibiotics since its been a whole week off. A part of me just wants to go natural. The other part of me wants to go back on meds since I only treated babs for 2 weeks.
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Maya12
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Hey guys thanks for all your help and support , I started back on meds today but so far am okay, I don't feel quite as detached and fogged so I guess it was just a really bad babs herx.
Also my llmd has told me it is okay to take med breaks and will not halt treatment or create resistance.
Thanks for all the support
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Maya12
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And jess I am glad the detached feeling is going with the babs treatment this gives me hope that by treating the babs I can get rid of that too
Hey jess how long have you been sick?
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