Treatment options? Where to go? Who to see?

[osisposis]

I have been very selective in what drugs I will try, I don't like being givin a altamatum of you either try this or we cant help you, I would like to try Rituximab, and that's saying a lot for me, seems I will have to yet again go to another doctor far away just to try to get a prescription that may actually work for me , this is BS!

 

[Gingergrrl]

I have been very selective in what drugs I will try, I don't like being givin a altamatum of you either try this or we cant help you, I would like to try Rituximab, and that's saying a lot for me, seems I will have to yet again go to another doctor far away just to try to get a prescription that may actually work for me , this is BS!

Can you try OMI vs. Stanford since you are able to get to CA and they are in the same basic area? I have no idea if they would think you are a candidate for RTX, and that is of course up to the doctors and their assessment, but they are definitely open to a variety of options and I would never, ever have gotten approved for IVIG without their assistance. Even though I had three doctors in agreement that IVIG was the next step, only OMI fought tirelessly for me to get the initial approval and I can never thank them enough.

 

[osisposis]

Can you try OMI vs. Stanford since you are able to get to CA and they are in the same basic area? I have no idea if they would think you are a candidate for RTX, and that is of course up to the doctors and their assessment, but they are definitely open to a variety of options and I would never, ever have gotten approved for IVIG without their assistance. Even though I had three doctors in agreement that IVIG was the next step, only OMI fought tirelessly for me to get the initial approval and I can never thank them enough.

what's OMI? PLEASE, MY BRAIN IS KIND OF TAKEING A VACATION RIGHT NOW, YES THAT MIGHT BE A PLAN, I POSE TO GO BACK TO sTANFORD BUT AT THIS POINT I'm THINKING IT'S USELESS , SORRY CAPS ON, TO LASY TO DELETE AND REWRITE, geez I will have to go though getting my so called primary doc here to refer me again, uggg, so tired of all this crap I got so burnt out on going to doctors before witch did nothing to help me while their stinky waiting room would put me back to bed for a week and infectious disease doctors waiting rooms are the worst, I cant stand the thought of going through all that again, I basicly quit going to doctors all together for many years and just helped myself as much as I could. , all I want is a doctor that's gets it and has a open enough mind to know that yep I have a pretty good understanding about what may be helpful to me and what I'm welling to try or not. fell like a setting duck for cancer , not a good felling, when the right doctor fells so out of reach. I just went through a horrable anaphylaxis reaction and it happens a lot but I'm scared to even call 911 or go to ER. cause if I cant really function will enough to make sure what they try to treat me with doesn't make matters worse. I got chewed on by Stanford for not calling their emergency number, than another one chewed me out for emails I sent instead, I can tell they want me to move on to somewhere else by what my new assigned doctor has said, isn't that nice. maybe they should advertise what they obviously don't see.

 

[Gingergrrl]

what's OMI? PLEASE, MY BRAIN IS KIND OF TAKEING A VACATION RIGHT NOW, YES THAT MIGHT BE A PLAN, I POSE TO GO BACK TO sTANFORD BUT AT THIS POINT I'm THINKING IT'S USELESS , SORRY CAPS ON, TO LASY TO DELETE AND REWRITE

Sorry, OMI is "Open Medicine Institute" in Mountainview, CA which is very close to Stanford in Palo Alto. I figured since you could travel to one, you'd be able to get to the other. It might take several months though to get an appt as a new patient. No worries re: the CAPS!

 

[osisposis]

Sorry, OMI is "Open Medicine Institute" in Mountainview, CA which is very close to Stanford in Palo Alto. I figured since you could travel to one, you'd be able to get to the other. It might take several months though to get an appt as a new patient. No worries re: the CAPS!

thank you, is there a certain doctor there I should request? one that understands the mold side of this?

 

[Gingergrrl]

thank you, is there a certain doctor there I should request? one that understands the mold side of this?

There are now three doctors there but my understanding (which could be wrong or this could have changed) is that Dr. Kogelnik is focusing on research and not taking new patients, Dr. Kaufman is either full and not taking new patients or has a very long waiting list, and the newer doctor, Dr. Chheda, is the one taking new patients. Although if you call, they can definitely confirm this for you.

ETA: Sorry I missed the second part of your question re: mold. None of them are mold or environmental specialists although they agree that mold can absolutely be a contributing factor as it was in my case. I do have a referral to an excellent mold specialist but this doctor is not at OMI. If you want more info, feel free to send me a PM.

 

[Mary]

@osisposis - You might try regular soda water, unflavored, to help if you want to avoid the chemicals in diet pepsi. Also, lemon juice in water was very good for helping me burp when my stomach acid was low.

Have you tried taking betaine HCL with pepsin (here's what I take: http://www.swansonvitamins.com/swanson-premium-hydrochloric-acid-pepsin-250-caps). Stomach acid is important for keeping your gut bacteria in balance, so it might help your diarrhea. Low stomach acid contributes to or can even cause SIBO, besides causing poor absorption of food and nutrients.

A doctor told me to start with one capsule of the HCL before a meal and work up to where I felt "acidy" and then to back off by one. My "acidy" point was 4 capsules. It's weird, when I felt it, I knew what he was talking about.

And I read somewhere that the pepsin was important as well, though I can't tell you why, but it's better than plain HCL by itself.

 

[osisposis]

@osisposis - You might try regular soda water, unflavored, to help if you want to avoid the chemicals in diet pepsi. Also, lemon juice in water was very good for helping me burp when my stomach acid was low.

Have you tried taking betaine HCL with pepsin (here's what I take: http://www.swansonvitamins.com/swanson-premium-hydrochloric-acid-pepsin-250-caps). Stomach acid is important for keeping your gut bacteria in balance, so it might help your diarrhea. Low stomach acid contributes to or can even cause SIBO, besides causing poor absorption of food and nutrients.

A doctor told me to start with one capsule of the HCL before a meal and work up to where I felt "acidy" and then to back off by one. My "acidy" point was 4 capsules. It's weird, when I felt it, I knew what he was talking about.

And I read somewhere that the pepsin was important as well, though I can't tell you why, but it's better than plain HCL by itself.

it's much better than it use to be, now diarrhea only sets in at certain times, not chronically like it was.

 

[osisposis]

There are now three doctors there but my understanding (which could be wrong or this could have changed) is that Dr. Kogelnik is focusing on research and not taking new patients, Dr. Kaufman is either full and not taking new patients or has a very long waiting list, and the newer doctor, Dr. Chheda, is the one taking new patients. Although if you call, they can definitely confirm this for you.

ETA: Sorry I missed the second part of your question re: mold. None of them are mold or environmental specialists although they agree that mold can absolutely be a contributing factor as it was in my case. I do have a referral to an excellent mold specialist but this doctor is not at OMI. If you want more info, feel free to send me a PM.

after watching Jarred Youngers Q and A I think I'm going to stick with trying Naltrexone for now, and maybe avoid another trip for a while, not recovered greatly from the last one, it's very hard on me, can you message me ? I haven't ever used the messagenger, thanks

 

[Gingergrrl]

after watching Jarred Youngers Q and A I think I'm going to stick with trying Naltrexone for now, and maybe avoid another trip for a while, not recovered greatly from the last one, it's very hard on me, can you message me ? I haven't ever used the messagenger, thanks

@osisposis Yes, will send you a message via PM to make sure that you get it. It will show up in your inbox in the upper right hand corner of your screen with the number "1" (assuming there are no other messages and if there are then it will reflect how many unread messages you have). Also, am assuming they prescribed you LDN vs. full strength naltrexone?

Wow - I'm really sorry to hear that. Maybe with all the research being done now on ME/CFS, something might turn up that could tangentially help your friend - there've got to be thousands more people like him unfortunately! :thumbdown:

I absolutely believe that some day something will be found that will help to heal people who have been injured by FQ antibiotics and Statins and that the current research is on the right track. And that many of us had this type of mitochondrial damage as one of our major triggers (like those who were injured by the gardasil (HPV) vaccine, etc).

 

[osisposis]

@osisposis Yes, will send you a message via PM to make sure that you get it. It will show up in your inbox in the upper right hand corner of your screen with the number "1" (assuming there are no other messages and if there are then it will reflect how many unread messages you have). Also, am assuming they prescribed you LDN vs. full strength naltrexone?



I absolutely believe that some day something will be found that will help to heal people who have been injured by FQ antibiotics and Statins and that the current research is on the right track. And that many of us had this type of mitochondrial damage as one of our major triggers (like those who were injured by the gardasil (HPV) vaccine, etc).

? I Don't Know , she just said Naltrexone, will pick it up at compound pharmacy tomarrow, she said not to take until Tuesday night in case I have problem tolerating, said to start with one, I'm thinking night isn't probably the best time to try it at fisrt, but whatever, could be a long night. ok, it's 1 mg. so guessing ya that's low dose

 

[Sushi]

she just said Naltrexone, will pick it up at compound pharmacy tomarrow

Be careful to check the strength. Many doctors don't know how low we have to start and give patients 3 or 4 mgs.

 

[osisposis]

Be careful to check the strength. Many doctors don't know how low we have to start and give patients 3 or 4 mgs.

well the compounding pharmacy didn't get fax so between multiple phone calls I found out it's 1 mg. she said we'd start with one and see how it goes, not starting it until Tuesday night so I can call them if I have any problems

 

[Sushi]

I found out it's 1 mg. she said we'd start with one and see how it goes, not starting it until Tuesday night so I can call them if I have any problems

Good. Many start around 1 mg though a few are very sensitive and need to start lower. I was okay starting at 1.5 mg.