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Posted 7/25/2018 8:07 AM (GMT 0)

Aerose91 said...

WalkingbyFaith said...

Aerose91 said...
I was misdiagnosed for 5 years. Since having been found to have bartonella i did 8 months on Buhner herbs with no change and am now on abx for 5 months but also no change. My current doc believes i have mast cell activation and i believe he's right, but also 5 months of heavy antihistamines and low histamine intake, still no change.

I just crossed 7 years and that is weighing on me considering I've had zero improvement. The depersonalization/derealization and psychosis are so thick, i would crawl through Ramadi for a cure

Aerose,

What does Dr. M. say about the lack of change with abx and mast cell treatment?

You have had MRI's or brain scans before, right? Did they reveal any "permanent" damage or specific cause?

Dr M says there is a stronger bartonella and mast cell protocol. He switches rifampin for rifabutin and for mast cells its ritalin, dexamethosone and something else i can't remember. I see him in 2 weeks and know im going on the rifabutin but im not sure about the mast cell treatment

Yes, I've had several MRIs and an MRA, all of which came back normal. However, my EEGs showed slowing and my SPECT showed a lot of hypoperfusion on both sides of the cerebal cortex. My SPECT has been the best test ive done as it actually shows something that would cause such intense psych symptoms

I sure hope this next protocol starts to tap into something, after 7 years im utterly exhausted of this

Are you taking biaxin with the Rifabutin? ...and are you seeing the Dr. M from Galaxy Labs?
Posted 7/25/2018 9:16 AM (GMT 0)

Girlie said...

Aerose91 said...
Seems like you guys tend to fluctuate depending on treatment then, huh? I've never had that. For 7 years now not a single treatment, med, therapy or supplement has done anything. My baseline of this disease doesn't budge


I'm so sorry Aerose - that you haven't had any improvement for 7 years of treatment.

Have you been to any of the very experienced LLMD's for a second appointment? (ie Dr.J clinic...or Dr. SP...or Dr. H.?)

Dr M is actually the second LLMD ive seen and the one i went to for a second opinion. He was the first one to bring up mast cell activation but after further bloodwork and a couple blood stains he concluded i dont have babesia or any other protozoa. Both LLMDs are in agreement that bartonella is the only infection that needs treatment. Or so it seems...
Posted 7/25/2018 3:20 PM (GMT 0)

Aerose91 said...

Girlie said...

Aerose91 said...
Seems like you guys tend to fluctuate depending on treatment then, huh? I've never had that. For 7 years now not a single treatment, med, therapy or supplement has done anything. My baseline of this disease doesn't budge


I'm so sorry Aerose - that you haven't had any improvement for 7 years of treatment.

Have you been to any of the very experienced LLMD's for a second appointment? (ie Dr.J clinic...or Dr. SP...or Dr. H.?)

Dr M is actually the second LLMD ive seen and the one i went to for a second opinion. He was the first one to bring up mast cell activation but after further bloodwork and a couple blood stains he concluded i dont have babesia or any other protozoa. Both LLMDs are in agreement that bartonella is the only infection that needs treatment. Or so it seems...

What do you think? Do you feel they could be wrong?
Posted 7/26/2018 3:11 PM (GMT 0)
No, i have no reason to believe they're wrong. I def feel that Dr M has the best grip on this of anyone I've seen and I'm confident in him. I guess it's just the nature of this illness that make me always think "could there be something else that everyone has missed?" This isn't, say, cancer where the iteology is well understood.

If i were to see another doctor atm i would see a CIRS doctor because even Dr M says that i have an underlying toxicity issue. Unfortunately i have no $ to see a second doc

Edit: yes this is Dr M from Galaxy, he definitely is sharp. I've been on Clarithromycin and Rifampin for about 5 months and the only time i herxed was for a couple weeks after doubling the rifampin. I see him in a couple weeks and he is going to switch me to Rifabutin. However, he's starting to believe (and so am i) that the brain toxicity and mast cell activation may be bigger players

Post Edited (Aerose91) : 7/26/2018 9:17:13 AM (GMT-6)

Posted 7/26/2018 3:44 PM (GMT 0)
In regards to the original post question about work-

Many people thorough out life are faced with work difficulties, with or with out lyme, they adapt to a work environment which better suits them. I remember lyme is not the "end all", but can be a huge challenge.

Many can not do what they went to school for , because of the physical environment (standing, lifting ect) and/or culture expectations/style (micromanaging, scheduling), however; they still need income.

-Look for a flexible work environment that does not have set hours.
-Exclude places with micromanaging. You may be able to work with your own adapted style. Some places dont care how its done, just as long as it gets done.

-Physical labor employees will have to pick something physical easier.
-Office jobs are best the old fashioned way- in your own cubical, open office is proven to not work.
-Can u work from home?
-Side work on your own time> have hobbies or natural born skill sets?

The catch? - The above will only work if there are places that offer this. Small towns with only a couple employment options dont work out so well.
Posted 7/27/2018 3:28 PM (GMT 0)

astroman said...
In regards to the original post question about work-

Many people thorough out life are faced with work difficulties, with or with out lyme, they adapt to a work environment which better suits them. I remember lyme is not the "end all", but can be a huge challenge.

Many can not do what they went to school for , because of the physical environment (standing, lifting ect) and/or culture expectations/style (micromanaging, scheduling), however; they still need income.

-Look for a flexible work environment that does not have set hours.
-Exclude places with micromanaging. You may be able to work with your own adapted style. Some places dont care how its done, just as long as it gets done.

-Physical labor employees will have to pick something physical easier.
-Office jobs are best the old fashioned way- in your own cubical, open office is proven to not work.
-Can u work from home?
-Side work on your own time> have hobbies or natural born skill sets?

The catch? - The above will only work if there are places that offer this. Small towns with only a couple employment options dont work out so well.

Ive gone through this in my head so many times but can never figure out a solution. My intolerance to energy expenditure(physical or cognitive) is so high that nearly any amt of work leaves me with damage spanning days to weeks/months. During those times I'm completely worthless
Posted 7/27/2018 4:34 PM (GMT 0)

astroman said...
In regards to the original post question about work-

Many people thorough out life are faced with work difficulties, with or with out lyme, they adapt to a work environment which better suits them. I remember lyme is not the "end all", but can be a huge challenge.

Many can not do what they went to school for , because of the physical environment (standing, lifting ect) and/or culture expectations/style (micromanaging, scheduling), however; they still need income.

-Look for a flexible work environment that does not have set hours.
-Exclude places with micromanaging. You may be able to work with your own adapted style. Some places dont care how its done, just as long as it gets done.

-Physical labor employees will have to pick something physical easier.
-Office jobs are best the old fashioned way- in your own cubical, open office is proven to not work.
-Can u work from home?
-Side work on your own time> have hobbies or natural born skill sets?

The catch? - The above will only work if there are places that offer this. Small towns with only a couple employment options dont work out so well.

Some of us (like me) can’t work at any job.

My symptoms are too unpredictable. On a good day - which is generallly 2-3 days per week I could but I can’t predict when they will happen.
Also the day can start fine and go south later.
.. or vice versa.
Posted 7/27/2018 11:55 PM (GMT 0)
Some have no choice, as they are their sole provider. Losing everything and moving to a homeless shelter would be their only backup plan, which would suck. Thats why some chronically ill people choose a rapid and sinful exit from life on earth.

Like everyone else here, I chose to stick around, but unfortunately I knew a couple others who've made the "other" choice.

I was pretty bad at one point, but had to work. I was miserable in the early 2000's. I'm lucky that I have somewhat of a wide variety of work skills and background.

I've had long lunches were I disappeared in the car a few miles away for a nap. Real flex time with projects vs tasks allows this at some places. Ive stood in incredible pain. Had to change jobs when I could not do them. I could not sit or stand long, needed variety. Learned to be pretty good at hiding lyme symptoms. If I got that bad again, now being older I could get disability, sell the house and get a trailer out in the country, living cheaper.

With my low immune stuff, Im not out of this yet. You need an immune system as you age. This is somewhat concerning.
Posted 7/28/2018 3:28 PM (GMT 0)
i am back to work after 6 months of STD,its been two weeks i am back now, it sucks.

the mornings are especially difficult with my morning pills at 6:30am. things start to improve later in the morning around 10 or 11AM, then in the afternoon the fatigue starts to set in. by 5pm i am done.

now i am in the mode of using the weekend to rest up what i can, to prepare for the week again.

i need to keep my family a float with a paycheck coming in, just doin what i have to do...but not sure how long i will be able to keep it goin.
Posted 7/28/2018 5:25 PM (GMT 0)
STD, state disability?
Posted 7/28/2018 6:01 PM (GMT 0)

Aerose91 said...
STD, state disability?

I think it means short term disability.
Posted 7/28/2018 6:04 PM (GMT 0)
Right. Duh
Posted 7/28/2018 7:58 PM (GMT 0)
yeah, short term disability.

i applied for Long term disability too, but that process is long and cumbersome. it may take weeks or months, not to mention they require you to apply for SSI or SSD in parallel.

so, it leaves me with little choice but to try to work, since there would be no money coming in at all for unknown amount of time.

they dont make it easy on us. i suppose i am lucky that i have a job, but nonetheless its hard try to manage it all with meds, herxes, etc. just hope i can keep it goin
Posted 7/28/2018 9:01 PM (GMT 0)
Nope cannot work. I cannot plan anything. I might feel great 1st few hours of any given day, then BOOM fatigue, pain, etc...IMO noone who has CHRONIC Lyme can work outside their home. Perhaps a part-time, on your own schedule>wouldnt that be nice?!

I can barely keep the household chores up. Thats work!
Posted 7/28/2018 9:06 PM (GMT 0)
I agree, i work from home, so its somewhat manageable....but still hard as hell when i have to actually think, or say run a conference call.

i couldn't imagine trying to go into an office environment...
Posted 7/28/2018 10:35 PM (GMT 0)
sierraDon

Does your job provide any financial security blanket, like a 401K or IRA? Not having any long-term retirement or financial safety net has been a huge source of anxiety for me lately
Posted 7/28/2018 10:49 PM (GMT 0)
Yes, i am fortunate i have some retirement planning. i started earlier, i am 48 now. so i have IRAs and partial pension vested from previous jobs. I have worked in IT for nearly 30 years, so have had reasonably good employment.

Unfortunately as much is this good to have the security blanket, it does me no real good now as if i would have to tap into any of it, it would be gone quick due to penalties...then nothing.

but yes i could see how that would weigh heavy on your head. best thing to do is put one foot forward, and remember that this condition we are all facing isnt permanent. we dont know what will our futures will bring, and this could all change (for the better). got to get your in health in order first, then work on the other stuff.
Posted 7/28/2018 11:47 PM (GMT 0)
You're right and that is the mindset ive had for the past several years- that tending to my health has been my full time job and I've vested fully in it. I got sick at 26 so didn't have much saved yet but drained it all in year 1 bouncing between doctors. There is still nothing i can do about it but realizing im about to be 34 has put into perspective how far behind i now am
Posted 7/29/2018 1:16 AM (GMT 0)

Aerose91 said...
No, i have no reason to believe they're wrong. I def feel that Dr M has the best grip on this of anyone I've seen and I'm confident in him. I guess it's just the nature of this illness that make me always think "could there be something else that everyone has missed?" This isn't, say, cancer where the iteology is well understood.

If i were to see another doctor atm i would see a CIRS doctor because even Dr M says that i have an underlying toxicity issue. Unfortunately i have no $ to see a second doc

Edit: yes this is Dr M from Galaxy, he definitely is sharp. I've been on Clarithromycin and Rifampin for about 5 months and the only time i herxed was for a couple weeks after doubling the rifampin. I see him in a couple weeks and he is going to switch me to Rifabutin. However, he's starting to believe (and so am i) that the brain toxicity and mast cell activation may be bigger players

I know someone who sees Dr M and he feels like he is in good hands.

He had been treating Bart under his care for 2 1/2 years I think and is getting close to stopping abx.
Posted 7/29/2018 3:15 AM (GMT 0)

Girlie said...

Aerose91 said...
No, i have no reason to believe they're wrong. I def feel that Dr M has the best grip on this of anyone I've seen and I'm confident in him. I guess it's just the nature of this illness that make me always think "could there be something else that everyone has missed?" This isn't, say, cancer where the iteology is well understood.

If i were to see another doctor atm i would see a CIRS doctor because even Dr M says that i have an underlying toxicity issue. Unfortunately i have no $ to see a second doc

Edit: yes this is Dr M from Galaxy, he definitely is sharp. I've been on Clarithromycin and Rifampin for about 5 months and the only time i herxed was for a couple weeks after doubling the rifampin. I see him in a couple weeks and he is going to switch me to Rifabutin. However, he's starting to believe (and so am i) that the brain toxicity and mast cell activation may be bigger players

I know someone who sees Dr M and he feels like he is in good hands.

He had been treating Bart under his care for 2 1/2 years I think and is getting close to stopping abx.

darn, 2.5 years. Does stopping abx mean he's almost recovered?
Posted 7/29/2018 3:36 AM (GMT 0)

Aerose91 said...

Girlie said...

Aerose91 said...
No, i have no reason to believe they're wrong. I def feel that Dr M has the best grip on this of anyone I've seen and I'm confident in him. I guess it's just the nature of this illness that make me always think "could there be something else that everyone has missed?" This isn't, say, cancer where the iteology is well understood.

If i were to see another doctor atm i would see a CIRS doctor because even Dr M says that i have an underlying toxicity issue. Unfortunately i have no $ to see a second doc

Edit: yes this is Dr M from Galaxy, he definitely is sharp. I've been on Clarithromycin and Rifampin for about 5 months and the only time i herxed was for a couple weeks after doubling the rifampin. I see him in a couple weeks and he is going to switch me to Rifabutin. However, he's starting to believe (and so am i) that the brain toxicity and mast cell activation may be bigger players

I know someone who sees Dr M and he feels like he is in good hands.

He had been treating Bart under his care for 2 1/2 years I think and is getting close to stopping abx.

darn, 2.5 years. Does stopping abx mean he's almost recovered?

I know 2.5 years sounds like a long time especially if we’ve been at it already for a year or longer.
Yes, dr M says he’s cleared it. He uses galaxy lab testing during treatment to gauge progress - though other llmd’s dont use testing. I don’t know enough about that lab to comment on the validity of doing that.

He said he is much better but has a few things lingering that should subside as the body heals.
Posted 7/29/2018 3:46 AM (GMT 0)
I pushed through the symps for 9 years until I just had too many symps to function. Used short term leave and family leave when symps made impossible to work but eventually I could no longer function and lost my 30 year career in IT in 2013 (15 months shy of retirement). I still have not improved enough to work although I have improved with treatment. I just think going undiagnosed and treated for over 10 years just did to much damage. Sadly.
Posted 7/29/2018 3:52 AM (GMT 0)
I just read Girlie`s post and that is the problem...symptoms are unpredictable. Very hard to plan life much less be dependable when don't know what the battle each day will be. It is a hard adjustment cause I expected to recover and get back yo work....now I have yo adjust to my new `normal` which is unpredictable at best
Posted 7/29/2018 4:01 AM (GMT 0)

Roxie60 said...
I just read Girlie`s post and that is the problem...symptoms are unpredictable. Very hard to plan life much less be dependable when don't know what the battle each day will be. It is a hard adjustment cause I expected to recover and get back yo work....now I have yo adjust to my new `normal` which is unpredictable at best

My brain was quite bad for awhile - even on the good days - good days meant I had minimal nerve pain and other symptoms.
I doubt if I could have even worked at a clothing store as managing the cash would have even been a challenge at times.
Posted 7/29/2018 4:20 AM (GMT 0)

Girlie said...

Roxie60 said...
I just read Girlie`s post and that is the problem...symptoms are unpredictable. Very hard to plan life much less be dependable when don't know what the battle each day will be. It is a hard adjustment cause I expected to recover and get back yo work....now I have yo adjust to my new `normal` which is unpredictable at best

My brain was quite bad for awhile - even on the good days - good days meant I had minimal nerve pain and other symptoms.
I doubt if I could have even worked at a clothing store as managing the cash would have even been a challenge at times.

Girlie- can i ask what you did before falling ill? Do you have any financial safety net you had accrued?
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