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Posted 8/14/2018 2:38 PM (GMT -5)
I've also heard that other parasites can cause severe neurological problems, but I don't know exactly what kind of symptoms.
Posted 8/14/2018 3:00 PM (GMT -5)
How is mast cell activation treated?
Posted 8/14/2018 3:18 PM (GMT -5)

Hoagie said...
How is mast cell activation treated?

I'm currently on a slew of anyihistamines, inositol, quercetin and ritalin for mast cell stabalization
Posted 8/14/2018 3:30 PM (GMT -5)

Girlie said...

Aerose91 said...

Notime4lyme said...
I didn't feel like I had depersonalization most of the time. But lately I was sharing some things that I wrote when I was really sick, with my sister, and she said that what I wrote sounded like a completely different person than the way I acted at the time. I guess I was unable to express myself verbally.

One of my relatives had horrible depersonalization and neurological issues for a while, and was much worse (couldn't talk, had to be in the hospital). They never figured out what exactly was going on. But now they are pretty much completely well. So your brain can heal and rewire itself.

But it sounds like you're thinking like yourself, even if you're not feeling like you are yourself. It's really hard to watch everyone going so far when you're stuck. I have done a lot of that, but I have come to doubt whether personal or professional achievement is everything that it looks like on the outside.

It's great that you can take care of yourself, and you have a LLMD.

It seems like just clarozithomycin or rifampin would be an unusual place to start, but I really know nothing about antibiotics. Have you tried treating for viruses or parasites or maybe babesia? I don't know why, but I think they've been the cause of a lot of my neurological symptoms.

I went to my current LLMD thinking that i had babesia because it seemed all my crazy psych/neurological issues were what i saw listed for protozoa infection. He also agreed and believed babesia. However, he ran thorough Igenix testing and did a blood stain himself and it all came back negative for parasites. Just bartonella encephalopathy and mast cell activation are the current rx's but bartonella treatment isn't doing anything

Is the blood stain 100% accurate? I know the Igenex testing isn't....but I'm not familiar with the blood stain/microscopy.

I do know that Dr. J figures if you don't treat Babs....you won't heal from bart. And sometimes the Babs symptoms aren't front and center.

So, the psych symptoms could all be bart...but because you have babesia (hypothetically speaking) - you won't be able to get rid of bart.

I have no idea how accurate a blood stain is. It feels like a good adjunct test to me.

I know Dr J emphasizes babesia treatment but how does he test for it?
Posted 8/14/2018 4:24 PM (GMT -5)
Keep hanging in there Aerose91, you can't imagine how much I relate to your statement. The great thing is you have a good doctor. Sometimes it takes a while to see progress, it did for me.

Have you treated for babesia at all? I have massive herxes to anti-protozoals like malarone and cryptolepis. I never tested positive for babesia but for me this response was all I needed to know that a protozoal infection (babesia or babs like organism) was playing a role in my health issues.
Posted 8/14/2018 6:24 PM (GMT -5)

Aerose91 said...

Girlie said...

Aerose91 said...

Notime4lyme said...
I didn't feel like I had depersonalization most of the time. But lately I was sharing some things that I wrote when I was really sick, with my sister, and she said that what I wrote sounded like a completely different person than the way I acted at the time. I guess I was unable to express myself verbally.

One of my relatives had horrible depersonalization and neurological issues for a while, and was much worse (couldn't talk, had to be in the hospital). They never figured out what exactly was going on. But now they are pretty much completely well. So your brain can heal and rewire itself.

But it sounds like you're thinking like yourself, even if you're not feeling like you are yourself. It's really hard to watch everyone going so far when you're stuck. I have done a lot of that, but I have come to doubt whether personal or professional achievement is everything that it looks like on the outside.

It's great that you can take care of yourself, and you have a LLMD.

It seems like just clarozithomycin or rifampin would be an unusual place to start, but I really know nothing about antibiotics. Have you tried treating for viruses or parasites or maybe babesia? I don't know why, but I think they've been the cause of a lot of my neurological symptoms.

I went to my current LLMD thinking that i had babesia because it seemed all my crazy psych/neurological issues were what i saw listed for protozoa infection. He also agreed and believed babesia. However, he ran thorough Igenix testing and did a blood stain himself and it all came back negative for parasites. Just bartonella encephalopathy and mast cell activation are the current rx's but bartonella treatment isn't doing anything

Is the blood stain 100% accurate? I know the Igenex testing isn't....but I'm not familiar with the blood stain/microscopy.

I do know that Dr. J figures if you don't treat Babs....you won't heal from bart. And sometimes the Babs symptoms aren't front and center.

So, the psych symptoms could all be bart...but because you have babesia (hypothetically speaking) - you won't be able to get rid of bart.

I have no idea how accurate a blood stain is. It feels like a good adjunct test to me.

I know Dr J emphasizes babesia treatment but how does he test for it?


He doesn't test for it...he treats everyone early on for babesia. He gauges when to stop by response...and also palpitates the abdomen and feels for liver and spleen swelling.

I know it sounds odd to treat everyone for babesia, but he feels the majority do have it.
And in my case.....i stalled out on lyme/bart treatment - and a year later...my LLND wasn't willing to even treat me for babesia.
If I didn't have babesia but was treated for it early on - I'd still be further ahead now IMO.
Posted 8/15/2018 5:32 PM (GMT -5)
Aerose,

I'm sorry I didn't see your post until just now. I am so sorry for your suffering. If I could fix you I would. I don't know what to say about the fact that none of your treatments seem to have had any affect on the worst symptoms. What I do know is that nothing is impossible with God.

You said, "but something has just been different lately" and "this week was the first time in nearly 7 years that I've cried."

Maybe something IS happening. Maybe it just doesn't feel like you thought it would.

I encourage you to keep a journal and write these things down. Maybe you are experiencing awakenings of emotional feelings, but you feel them as negative things instead of joy or peace or love or longing.

I'll keep you in my prayers. You are a very special person, and God definitely has a plan for your life. I'm glad you reached out to us. I hope that you will continue to. This is not something anyone should try to bear alone.

Post Edited (WalkingbyFaith) : 8/15/2018 4:42:44 PM (GMT-6)

Posted 8/16/2018 2:02 AM (GMT -5)

Girlie said...

Aerose91 said...

Girlie said...

Aerose91 said...

Notime4lyme said...
I didn't feel like I had depersonalization most of the time. But lately I was sharing some things that I wrote when I was really sick, with my sister, and she said that what I wrote sounded like a completely different person than the way I acted at the time. I guess I was unable to express myself verbally.

One of my relatives had horrible depersonalization and neurological issues for a while, and was much worse (couldn't talk, had to be in the hospital). They never figured out what exactly was going on. But now they are pretty much completely well. So your brain can heal and rewire itself.

But it sounds like you're thinking like yourself, even if you're not feeling like you are yourself. It's really hard to watch everyone going so far when you're stuck. I have done a lot of that, but I have come to doubt whether personal or professional achievement is everything that it looks like on the outside.

It's great that you can take care of yourself, and you have a LLMD.

It seems like just clarozithomycin or rifampin would be an unusual place to start, but I really know nothing about antibiotics. Have you tried treating for viruses or parasites or maybe babesia? I don't know why, but I think they've been the cause of a lot of my neurological symptoms.

I went to my current LLMD thinking that i had babesia because it seemed all my crazy psych/neurological issues were what i saw listed for protozoa infection. He also agreed and believed babesia. However, he ran thorough Igenix testing and did a blood stain himself and it all came back negative for parasites. Just bartonella encephalopathy and mast cell activation are the current rx's but bartonella treatment isn't doing anything

Is the blood stain 100% accurate? I know the Igenex testing isn't....but I'm not familiar with the blood stain/microscopy.

I do know that Dr. J figures if you don't treat Babs....you won't heal from bart. And sometimes the Babs symptoms aren't front and center.

So, the psych symptoms could all be bart...but because you have babesia (hypothetically speaking) - you won't be able to get rid of bart.

I have no idea how accurate a blood stain is. It feels like a good adjunct test to me.

I know Dr J emphasizes babesia treatment but how does he test for it?


He doesn't test for it...he treats everyone early on for babesia. He gauges when to stop by response...and also palpitates the abdomen and feels for liver and spleen swelling.

I know it sounds odd to treat everyone for babesia, but he feels the majority do have it.
And in my case.....i stalled out on lyme/bart treatment - and a year later...my LLND wasn't willing to even treat me for babesia.
If I didn't have babesia but was treated for it early on - I'd still be further ahead now IMO.

Wow, so he just assumes everyone has it? Crazy. Was treatment for babesia what broke you through your plateau?
Posted 8/16/2018 2:05 AM (GMT -5)
Thank you so much, WalkingbyFaith and sebreg. It's been a very tough few weeks lately and your words of support help a lot. Getting through it. Grinding, but getting through it
Posted 8/16/2018 2:16 AM (GMT -5)

Aerose91 said...

Girlie said...

Aerose91 said...

Girlie said...

Aerose91 said...

Notime4lyme said...
I didn't feel like I had depersonalization most of the time. But lately I was sharing some things that I wrote when I was really sick, with my sister, and she said that what I wrote sounded like a completely different person than the way I acted at the time. I guess I was unable to express myself verbally.

One of my relatives had horrible depersonalization and neurological issues for a while, and was much worse (couldn't talk, had to be in the hospital). They never figured out what exactly was going on. But now they are pretty much completely well. So your brain can heal and rewire itself.

But it sounds like you're thinking like yourself, even if you're not feeling like you are yourself. It's really hard to watch everyone going so far when you're stuck. I have done a lot of that, but I have come to doubt whether personal or professional achievement is everything that it looks like on the outside.

It's great that you can take care of yourself, and you have a LLMD.

It seems like just clarozithomycin or rifampin would be an unusual place to start, but I really know nothing about antibiotics. Have you tried treating for viruses or parasites or maybe babesia? I don't know why, but I think they've been the cause of a lot of my neurological symptoms.

I went to my current LLMD thinking that i had babesia because it seemed all my crazy psych/neurological issues were what i saw listed for protozoa infection. He also agreed and believed babesia. However, he ran thorough Igenix testing and did a blood stain himself and it all came back negative for parasites. Just bartonella encephalopathy and mast cell activation are the current rx's but bartonella treatment isn't doing anything

Is the blood stain 100% accurate? I know the Igenex testing isn't....but I'm not familiar with the blood stain/microscopy.

I do know that Dr. J figures if you don't treat Babs....you won't heal from bart. And sometimes the Babs symptoms aren't front and center.

So, the psych symptoms could all be bart...but because you have babesia (hypothetically speaking) - you won't be able to get rid of bart.

I have no idea how accurate a blood stain is. It feels like a good adjunct test to me.

I know Dr J emphasizes babesia treatment but how does he test for it?


He doesn't test for it...he treats everyone early on for babesia. He gauges when to stop by response...and also palpitates the abdomen and feels for liver and spleen swelling.

I know it sounds odd to treat everyone for babesia, but he feels the majority do have it.
And in my case.....i stalled out on lyme/bart treatment - and a year later...my LLND wasn't willing to even treat me for babesia.
If I didn't have babesia but was treated for it early on - I'd still be further ahead now IMO.

Wow, so he just assumes everyone has it? Crazy. Was treatment for babesia what broke you through your plateau?

Yes, he does. Are there some people who don't have babesia....and get treated for something they don't have? I would think so...and that's not ideal...but in my case I would have been way further ahead if I had seen Dr. J. early on. Not only did I plateau...but the babesia went unchecked for a long time while we did overkill on the bart meds.
I ended up self-treating babesia in 2017....buying meds online...and also received a 'gift' from someone because I couldn't get mepron online.
I think that may be why I did a short run on babesia meds with Dr. J.

I don't know for sure yet, if I've broken through my plateau....as I just finished my babesia focussed treatment with Dr. J.
I know something seems to be changing...hopefully it's for the better...so hard to tell.

I'm a bit leery of this persister protocol...I keep thinking that now that Babesia is out of the way...I may just need to do Bart again - with Rifabutin...do I need the Dapsone and Daraprim? I'm concerned about the folic acid levels dropping (causing anemia) - and at this point i don't think I can get the folic acid tested...Dr. J. never discussed this with me (not good) - if he had given me a lab req for monthly folic acid tests...then I would have told him I can't get it done here....but I was home when I pieced it all together...

One reason is that just prior to seeing Dr. J. for my Aug appt., I snuck in some bart meds for a couple weeks and I had what I think was a herx. ...including a fever...which I've never had with lyme and co's. lots of pain...and then next day - I felt good - one of the best days I've had in 5 years.

I've had a pretty good week...including my days in Washington DC.....
Posted 8/16/2018 6:04 AM (GMT -5)

Girlie said...

Aerose91 said...

Girlie said...

Aerose91 said...

Girlie said...

Aerose91 said...

Notime4lyme said...
I didn't feel like I had depersonalization most of the time. But lately I was sharing some things that I wrote when I was really sick, with my sister, and she said that what I wrote sounded like a completely different person than the way I acted at the time. I guess I was unable to express myself verbally.

One of my relatives had horrible depersonalization and neurological issues for a while, and was much worse (couldn't talk, had to be in the hospital). They never figured out what exactly was going on. But now they are pretty much completely well. So your brain can heal and rewire itself.

But it sounds like you're thinking like yourself, even if you're not feeling like you are yourself. It's really hard to watch everyone going so far when you're stuck. I have done a lot of that, but I have come to doubt whether personal or professional achievement is everything that it looks like on the outside.

It's great that you can take care of yourself, and you have a LLMD.

It seems like just clarozithomycin or rifampin would be an unusual place to start, but I really know nothing about antibiotics. Have you tried treating for viruses or parasites or maybe babesia? I don't know why, but I think they've been the cause of a lot of my neurological symptoms.

I went to my current LLMD thinking that i had babesia because it seemed all my crazy psych/neurological issues were what i saw listed for protozoa infection. He also agreed and believed babesia. However, he ran thorough Igenix testing and did a blood stain himself and it all came back negative for parasites. Just bartonella encephalopathy and mast cell activation are the current rx's but bartonella treatment isn't doing anything

Is the blood stain 100% accurate? I know the Igenex testing isn't....but I'm not familiar with the blood stain/microscopy.

I do know that Dr. J figures if you don't treat Babs....you won't heal from bart. And sometimes the Babs symptoms aren't front and center.

So, the psych symptoms could all be bart...but because you have babesia (hypothetically speaking) - you won't be able to get rid of bart.

I have no idea how accurate a blood stain is. It feels like a good adjunct test to me.

I know Dr J emphasizes babesia treatment but how does he test for it?


He doesn't test for it...he treats everyone early on for babesia. He gauges when to stop by response...and also palpitates the abdomen and feels for liver and spleen swelling.

I know it sounds odd to treat everyone for babesia, but he feels the majority do have it.
And in my case.....i stalled out on lyme/bart treatment - and a year later...my LLND wasn't willing to even treat me for babesia.
If I didn't have babesia but was treated for it early on - I'd still be further ahead now IMO.

Wow, so he just assumes everyone has it? Crazy. Was treatment for babesia what broke you through your plateau?

Yes, he does. Are there some people who don't have babesia....and get treated for something they don't have? I would think so...and that's not ideal...but in my case I would have been way further ahead if I had seen Dr. J. early on. Not only did I plateau...but the babesia went unchecked for a long time while we did overkill on the bart meds.
I ended up self-treating babesia in 2017....buying meds online...and also received a 'gift' from someone because I couldn't get mepron online.
I think that may be why I did a short run on babesia meds with Dr. J.

I don't know for sure yet, if I've broken through my plateau....as I just finished my babesia focussed treatment with Dr. J.
I know something seems to be changing...hopefully it's for the better...so hard to tell.

I'm a bit leery of this persister protocol...I keep thinking that now that Babesia is out of the way...I may just need to do Bart again - with Rifabutin...do I need the Dapsone and Daraprim? I'm concerned about the folic acid levels dropping (causing anemia) - and at this point i don't think I can get the folic acid tested...Dr. J. never discussed this with me (not good) - if he had given me a lab req for monthly folic acid tests...then I would have told him I can't get it done here....but I was home when I pieced it all together...

One reason is that just prior to seeing Dr. J. for my Aug appt., I snuck in some bart meds for a couple weeks and I had what I think was a herx. ...including a fever...which I've never had with lyme and co's. lots of pain...and then next day - I felt good - one of the best days I've had in 5 years.

I've had a pretty good week...including my days in Washington DC.....

I'm glad to hear you feel something is shifting. I always wondered if all i have is 1 infection when it seems everyone has multiple. It frustrates me because most of my symptoms seem to be more closely related to babesia than bartonella, even Dr M thought so and tested me extensively for both strains. He did another blood stain last visit so I'm looking forward to getting the results in a few weeks.

How long does Dr J treat babesia? Is it the same for everybody considering he doesn't test for it?
Posted 8/16/2018 6:19 AM (GMT -5)

Aerose91 said...
Thank you so much, WalkingbyFaith and sebreg. It's been a very tough few weeks lately and your words of support help a lot. Getting through it. Grinding, but getting through it

You're welcome my friend. Keep up the good fight. You will see progress, one way or another. It can take some trial and error. I have had so many ups and downs, periods of hopelessness, but have eventually made lots of progress. It helped me to read inspirational stories, stories of people who recovered from terrible situations (including lyme/coinfections recovery stories). Feeding hope is important.

I've always liked researching these illnesses and my treatment options. That way if one thing doesn't work I have an idea of various contingencies I can turn to. It helped me maintain hope, because when one thing falls through at least you have another thing to turn to. And also try to remember, there are many ways to get better from these illnesses.

"Grind" is one of the words I most often use. It perfectly describes this experience and these illnesses!
Posted 8/16/2018 8:38 AM (GMT -5)

sebreg said...

Aerose91 said...
Thank you so much, WalkingbyFaith and sebreg. It's been a very tough few weeks lately and your words of support help a lot. Getting through it. Grinding, but getting through it

You're welcome my friend. Keep up the good fight. You will see progress, one way or another. It can take some trial and error. I have had so many ups and downs, periods of hopelessness, but have eventually made lots of progress. It helped me to read inspirational stories, stories of people who recovered from terrible situations (including lyme/coinfections recovery stories). Feeding hope is important.

I've always liked researching these illnesses and my treatment options. That way if one thing doesn't work I have an idea of various contingencies I can turn to. It helped me maintain hope, because when one thing falls through at least you have another thing to turn to. And also try to remember, there are many ways to get better from these illnesses.

"Grind" is one of the words I most often use. It perfectly describes this experience and these illnesses!

You touched on part of my troubles lately- for the past several years I've found contentment in my disease by telling myself i would turn over every stone, however small. However, after 7 years now im realising there is almost nothing left. It took me 7 years but I'm tapped out.
It would be easier to stay motivated if i was having any sort of success with anything but i haven't. Ever. I feel I've reached a breaking point where i just can't take this anymore. Things are so bad in my brain, i don't know how much more i can take
Posted 8/16/2018 9:08 AM (GMT -5)
I hear you. Totally understand those feelings, fully justified.

That said I think sticking with Dr M for a while and giving him a good chance is worth it. 3 other ideas: exploring babesia treatment. Have you tried treating for that? Exploring mold potentially playing a role in your case (might want to look into cholestyramine). And finally bvt could be worth exploring if you don't end up seeing improvements on herbal or pharma antimicrobials.

Rooting for you!!
Posted 8/16/2018 10:10 AM (GMT -5)
Im definitely staying with Dr M. I feel like he has the best grip on this of anyone I've seen, unfortunately bartonella and mast cell treatment haven't worked.

I did Buhner's babesia protocol for a while cuz i suspected it. I had a little die off initially then it passed and same thing- nothing happened. I have no way of knowing if what it killed off was babesia or not.
I have been adressing mold for 3.5 years now. I got rid of all my belongings and lived off the grid in the desert, then moved to my truck and have been there since. It's the only way to fully control my environment. I felt a little better when first getting to the desert then again, no changes after that. This crap just doesn't budge after 7 effing years.

Thanks for lending an ear, sebreg. It helps. I've reached a breaking point lately and have been in a really bad mental place. 7 straight years of fully devoting my life to this and having no result- im exhausted
Posted 8/16/2018 11:47 AM (GMT -5)
Gotcha, good to hear you've tried to different things. One thing in regards to babesia, I had some response to herbals, but I've honestly found malarone to be most effective for me. I don't know if you can convince your doc, but it could be worth trying it to see if you get a response.
Posted 8/16/2018 12:19 PM (GMT -5)
Aerose,

I know you've asked about cholestyramine before. Have you actually used it? I know the pure stuff is expensive, but that is definitely a stone you should not leave unturned IMO due to the past mold exposure and possible CIRS genetic factors.

Do you or have you used any other binders on a regular basis?
Posted 8/16/2018 12:26 PM (GMT -5)

Aerose91 said...


I'm glad to hear you feel something is shifting. I always wondered if all i have is 1 infection when it seems everyone has multiple. It frustrates me because most of my symptoms seem to be more closely related to babesia than bartonella, even Dr M thought so and tested me extensively for both strains. He did another blood stain last visit so I'm looking forward to getting the results in a few weeks.

How long does Dr J treat babesia? Is it the same for everybody considering he doesn't test for it?


But, can the testing be relied one? I think this is why Dr. J just treats everyone for all three B's.
Otherwise you end up sometimes treating for 3-4 years and THEN end up treating the Babesia that you didn't think you had...

So, what's worse? treating some people for babs that don't have it? Or not treating for Babs and going on for 3-4 years...and THEN realizing maybe Babesia needs to be treated (or in some cases...the LLMD still denying you have babesia)
Yes, I guess it sucks for people to treat Babesia that don't have it....BUT Dr. J thinks either all or most people have Babesia.
He said to me "Babesia is the driver"....or something like that. He didn't say for everyone...though.

I'm not knocking the Docs who don't initially treat Babesia or Bart...etc. BUT at some point it needs to be considered - especially because the testing just isn't good enough.

No, the treatment time isn't the same for everyone - He gauges the time by response to the babesia protocols ...how you're progressing while on treatment.......and also palpatates the abdomen - feeling for swollen liver and/or spleen.

For me, I only did 5 cycles. But it is double the usual dose and it's a killer.

My new protocol has me doing clindamycin one week (which has some action against babesia, too) as well as Alinia on another week...so he hasn't totally abandoned the babesia treatment.

This protocol is for 4 months...he wanted to 'see' me in 3 months, but he was all booked up. He's been over-loaded lately with patients.
Posted 8/16/2018 12:34 PM (GMT -5)

Aerose91 said...
Im definitely staying with Dr M. I feel like he has the best grip on this of anyone I've seen, unfortunately bartonella and mast cell treatment haven't worked.

I did Buhner's babesia protocol for a while cuz i suspected it. I had a little die off initially then it passed and same thing- nothing happened. I have no way of knowing if what it killed off was babesia or not.
I have been adressing mold for 3.5 years now. I got rid of all my belongings and lived off the grid in the desert, then moved to my truck and have been there since. It's the only way to fully control my environment. I felt a little better when first getting to the desert then again, no changes after that. This crap just doesn't budge after 7 effing years.

Thanks for lending an ear, sebreg. It helps. I've reached a breaking point lately and have been in a really bad mental place. 7 straight years of fully devoting my life to this and having no result- im exhausted

7 years - definitely warrants a few month trial on heavy hitting Babesia meds....I'm pretty sure you'd know within the first couple of weeks - the die-off is quite noticeable.... sad
Posted 8/16/2018 1:39 PM (GMT -5)

Girlie said...

Aerose91 said...
Im definitely staying with Dr M. I feel like he has the best grip on this of anyone I've seen, unfortunately bartonella and mast cell treatment haven't worked.

I did Buhner's babesia protocol for a while cuz i suspected it. I had a little die off initially then it passed and same thing- nothing happened. I have no way of knowing if what it killed off was babesia or not.
I have been adressing mold for 3.5 years now. I got rid of all my belongings and lived off the grid in the desert, then moved to my truck and have been there since. It's the only way to fully control my environment. I felt a little better when first getting to the desert then again, no changes after that. This crap just doesn't budge after 7 effing years.

Thanks for lending an ear, sebreg. It helps. I've reached a breaking point lately and have been in a really bad mental place. 7 straight years of fully devoting my life to this and having no result- im exhausted

7 years - definitely warrants a few month trial on heavy hitting Babesia meds....I'm pretty sure you'd know within the first couple of weeks - the die-off is quite noticeable.... sad

I would be completely open to anti malarials but ive never had anyone prescribe them. I went to Dr M assuming i had babesia and he could also guide me with the bartonella but when tests and my blood stains came back negative, he dropped it. I have no way to try babesia meds unless i start with another doctor, which i can't afford alongside Dr M
Posted 8/16/2018 1:44 PM (GMT -5)

WalkingbyFaith said...
Aerose,

I know you've asked about cholestyramine before. Have you actually used it? I know the pure stuff is expensive, but that is definitely a stone you should not leave unturned IMO due to the past mold exposure and possible CIRS genetic factors.

Do you or have you used any other binders on a regular basis?

I haven't tried it, no one has ever prescribed it for me. A few of my doctors have suspected CIRS but they all get caught up when my c4a comes back normal. I also have the "post lyme" HLA type.

I have occasionally felt slightly better with bentonite clay but nothing major nor anything sustaining
Posted 8/16/2018 1:50 PM (GMT -5)

Girlie said...

Aerose91 said...


I'm glad to hear you feel something is shifting. I always wondered if all i have is 1 infection when it seems everyone has multiple. It frustrates me because most of my symptoms seem to be more closely related to babesia than bartonella, even Dr M thought so and tested me extensively for both strains. He did another blood stain last visit so I'm looking forward to getting the results in a few weeks.

How long does Dr J treat babesia? Is it the same for everybody considering he doesn't test for it?


But, can the testing be relied one? I think this is why Dr. J just treats everyone for all three B's.
Otherwise you end up sometimes treating for 3-4 years and THEN end up treating the Babesia that you didn't think you had...

So, what's worse? treating some people for babs that don't have it? Or not treating for Babs and going on for 3-4 years...and THEN realizing maybe Babesia needs to be treated (or in some cases...the LLMD still denying you have babesia)
Yes, I guess it sucks for people to treat Babesia that don't have it....BUT Dr. J thinks either all or most people have Babesia.
He said to me "Babesia is the driver"....or something like that. He didn't say for everyone...though.

I'm not knocking the Docs who don't initially treat Babesia or Bart...etc. BUT at some point it needs to be considered - especially because the testing just isn't good enough.

No, the treatment time isn't the same for everyone - He gauges the time by response to the babesia protocols ...how you're progressing while on treatment.......and also palpatates the abdomen - feeling for swollen liver and/or spleen.

For me, I only did 5 cycles. But it is double the usual dose and it's a killer.

My new protocol has me doing clindamycin one week (which has some action against babesia, too) as well as Alinia on another week...so he hasn't totally abandoned the babesia treatment.

This protocol is for 4 months...he wanted to 'see' me in 3 months, but he was all booked up. He's been over-loaded lately with patients.

When i described my symptoms to Dr M he also susoected babesia or some other protozoa. He said they tend to cause the stronger psych symptoms like i have. But i understand he isn't going to treat me for something my tests are negative for. I see him again in 3 weeks and i hope we can discuss if there is anything else to attack
Posted 8/16/2018 2:00 PM (GMT -5)

Aerose91 said...

Girlie said...

Aerose91 said...


I'm glad to hear you feel something is shifting. I always wondered if all i have is 1 infection when it seems everyone has multiple. It frustrates me because most of my symptoms seem to be more closely related to babesia than bartonella, even Dr M thought so and tested me extensively for both strains. He did another blood stain last visit so I'm looking forward to getting the results in a few weeks.

How long does Dr J treat babesia? Is it the same for everybody considering he doesn't test for it?


But, can the testing be relied one? I think this is why Dr. J just treats everyone for all three B's.
Otherwise you end up sometimes treating for 3-4 years and THEN end up treating the Babesia that you didn't think you had...

So, what's worse? treating some people for babs that don't have it? Or not treating for Babs and going on for 3-4 years...and THEN realizing maybe Babesia needs to be treated (or in some cases...the LLMD still denying you have babesia)
Yes, I guess it sucks for people to treat Babesia that don't have it....BUT Dr. J thinks either all or most people have Babesia.
He said to me "Babesia is the driver"....or something like that. He didn't say for everyone...though.

I'm not knocking the Docs who don't initially treat Babesia or Bart...etc. BUT at some point it needs to be considered - especially because the testing just isn't good enough.

No, the treatment time isn't the same for everyone - He gauges the time by response to the babesia protocols ...how you're progressing while on treatment.......and also palpatates the abdomen - feeling for swollen liver and/or spleen.

For me, I only did 5 cycles. But it is double the usual dose and it's a killer.

My new protocol has me doing clindamycin one week (which has some action against babesia, too) as well as Alinia on another week...so he hasn't totally abandoned the babesia treatment.

This protocol is for 4 months...he wanted to 'see' me in 3 months, but he was all booked up. He's been over-loaded lately with patients.

When i described my symptoms to Dr M he also susoected babesia or some other protozoa. He said they tend to cause the stronger psych symptoms like i have. But i understand he isn't going to treat me for something my tests are negative for. I see him again in 3 weeks and i hope we can discuss if there is anything else to attack

Oh wow - he goes on testing only? This is surprising...as we all know that symptoms and response to meds is important since the testing just aint good enough.

I hate to say this, but we had a member posting a few months ago about Dr. M not recognizing the other infections and insisted he wasn't a LLMD (based on that). I argued that he was. I am emailing with someone who sees him...and he is happy with the treatment thus far...but it is bart focussed and he is stepping down treatment after almost 3 years....but does have some symptoms left...but I guess the testing is showing he's 'beat' it. I think the leftover symptoms are thought to be not active infection, but areas of healing that is now needed.

BTW - have you done some 'rounds' of Artemisinin? increasing to high doses on a 4 days on, 10 off or a similar schedule?
Posted 8/16/2018 2:54 PM (GMT -5)
Oh heck yeah, if you've never been on serious anti-protozoal meds after all this time and haven't seen progress with other therapies I think it makes a lot of sense to give it a shot and gauge your response. Especially if you've often suspected babesia/babs like organism was playing a role in your health. It's disappointing to hear that your doc would only treat based on tests. Like I mentioned I never tested positive for babesia (which is why I've had to push my own doc to pursue babesia treatment) but have always strongly responded to those meds.

I think it's a great angle to look into. Nothing guaranteed of course, but in many respects trying babesia meds would likely give you some answers one way or the other.
Posted 8/16/2018 3:43 PM (GMT -5)

Aerose91 said...

WalkingbyFaith said...
Aerose,

I know you've asked about cholestyramine before. Have you actually used it? I know the pure stuff is expensive, but that is definitely a stone you should not leave unturned IMO due to the past mold exposure and possible CIRS genetic factors.

Do you or have you used any other binders on a regular basis?

I haven't tried it, no one has ever prescribed it for me. A few of my doctors have suspected CIRS but they all get caught up when my c4a comes back normal. I also have the "post lyme" HLA type.

I have occasionally felt slightly better with bentonite clay but nothing major nor anything sustaining

Aerose,

Elevated C4a occurs with ongoing mold exposure, which you don't have. You have past exposure.

Your most serious symptoms are brain related, which is likely due to brain inflammation. Toxins of all sorts result in brain inflammation. Binders are necessary to remove the toxins. With impaired organs and detoxification, our bodies cannot sufficiently remove toxins.

Binders should be taken regularly. It seems best to use more than one or to rotate them. I encourage you to try at least 3 different ones and see which ones make the most difference for you. If you have mercury amalgams, do not take chlorella. Start at low doses and work your way up. Here are the ones I can think of.

Cholestyramine
Modified citrus pectin (Pectasol-C is one example)
Modified citrus pectin with alginate (Pectaclear is an example)
Chlorella
Zeolite (Zeobind by Biopure has been recommended by another member)
Bentonite clay
Diatomaceous earth (cuts up intestinal parasites = possible herx)
Jernigan's Neuro Antitox II CNS/PNS formula (especially for ammonia buildup, which Jernigan believes is a major cause of brain inflammation and neuro symptoms; this has been used and recommended by several members)

Based on your history and symptoms, my best guess is that Cholestyramine and Jernigan's Neuro Antitox II CNS/PNS are the most likely to have some affect on you. Binders are not very effective unless taken regularly, but I'm learning I need to take breaks periodically.

If you want to try cholestyramine, ask Dr. M for a prescription.

Unfortunately, most of us still have to know more and push for more even with Lyme literate doctors.

Post Edited (WalkingbyFaith) : 8/16/2018 2:46:22 PM (GMT-6)

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