Disappointing Visit to Dr. Montoya's PA

[BellaSC]

I had a bad experience with LDN as well but I do not tolerate many meds that others do. I also had a very bad experience with a so called ME/CFS expert (not Montoya and I have never been to his clinic) so do not take it personally. It was disappointing but I moved on to see another doctor who was great. Am not going to mention any names, only that I relate to your experience.

Thanks @Gingergrrl !!

 

[BellaSC]

I'm really sorry you had that experience. Can you tell Dr. Montoya? I think these specialists do give a lot of meds, correct? That's why I can't see them, really. Anyway, you shouldn't have been treated that way and it's weird for a specialist who probably isn't cheap to have that kind of staff.

I did horrible on LDN but may try it again, in the AM, super low dose. Maybe. I could not sleep at all on that stuff.

You are not alone. I just had my thyroid removed and the surgeon didn't even see me prior to, or after the surgery. How's that one for you? These healthcare professionals need a bleeping PULSE.

Wow! so sorry to hear about your experience with the surgeon @Misfit Toy .
Dealing with Chronic Fatigue is difficult enough.
Not having much support only isolates an already isolated life that many of us experience after becoming ill.
BUT, having doctors, who "should" be providing expertise and support and then DO NOT is just frustrating and unacceptable.
Thanks for your support.
Since my last visit with Dr. Montoya himself was not so great, I'm very hesitant to send him my thoughts on one of his staff.

 

[Sushi]

I was originally prescribed a dose of 4.5 mg....The dosage was changed to a super low dose of .5mg. I just haven't been able to get myself to take it after having such bad reactions to it both times I took the 4.5mg.

That isn't very encouraging that they prescribed 4.5 mg as a starting dose! I know someone who was hospitalized from a 3 mg dose--most of us just can't tolerate such high doses in the beginning. The person who was hospitalized did really well though on a very low dose and later titrated up successfully.

 

[roller]

isnt the normal naltrexone dose 9 mg?
it may depend on how long the disease is ongoing, to determine the dose.
would be very interesting how they did this.
you dont have blood type 0, @BellaSC ?

 

[Billt]

BellaSC
Sorry you had such a bad time even after you have been going there for so long ! We have not been to see Dr Montoya but have been through lots of doctors with this same attitude. Seems like most are getting like Misfit's dr.
If they could get by without seeing you they would. Hang in there.
Wondering what the R/X was that was causing hair loss as this is now happening to my son. He has been LDN for almost a year going up to 6mg. He had no real side effects ( which is good ), but it has not done anything for him either.
Maybe the reaction you got from the LDN ( even though it was bad ) could mean it will do something for you.
Hope the low dose works..

 

[JES]

isnt the normal naltrexone dose 9 mg?
it may depend on how long the disease is ongoing, to determine the dose.
would be very interesting how they did this.
you dont have blood type 0, @BellaSC ?

LDN is Naltrexone, just like low-dose-Aspirin is Aspirin. The "normal" dosage of Naltrexone is 50 mg, it was originally made in 50 mg pills for treating alcohol and drug dependence. It has no use for CFS in this dosage.

3 mg of Naltrexone is already low dosage, technically speaking. The CFS patients in my country have routinely been prescribed 3-4.5 mg to start with, which is what I was given as well.

 

[Gingergrrl]

3 mg of Naltrexone is already low dosage, technically speaking. The CFS patients in my country have routinely been prescribed 3-4.5 mg to start with, which is what I was given as well.

I was started on 1.5 mg of LDN (two years ago) and it made me incredibly ill with complete insomnia (did not sleep for even a minute the whole night) and insomnia is not usually a big issue for me. I did not tolerate it at all and many people do not.

 

[Gingergrrl]

Since my last visit with Dr. Montoya himself was not so great, I'm very hesitant to send him my thoughts on one of his staff.

If you did this, I would be very clear in your mind what your goal is and if you plan to continue going there as a patient. I challenged a local pulmonologist that I saw b/c he ran a test completely wrong (confirmed by my other docs) and then was very rude and mean-spirited and yelled at me and my husband and offered no follow-up.

My goal was to contest the bill and invalid test, and I succeeded and did not have to pay it, but I do not intend to ever see this doctor again. I will be seeing someone else mid-March for a proper pulmonary assessment. Do you plan to stay w/Montoya's clinic?

 

[Seven7]

It is unfortunate that you had so bad side effects from the medication. LDN is ranked as the best pharmacological treatment by CFS by patients on this site, so there is a good reason why it gets prescribed. It also typically has very low side effect profile (consider that drug addicts are prescribed 50 mg dosage). I started with 0.5 mg and moved up to 1.5 mg in a week or two. The only side effect I had was a bit decreased sleep quality for the first few days, but after that it actually improved my deep sleep somewhat.

Way too much to fast. It took me to go from 0.5 to 4.5 about 4 years if that helps you!!!! The way I know is becuAse I get super sleepy. I cannot stay awake ( not in a good way) That is my tell tell.

Also I think the start dose is ok but start every other day 0.5 then everyday ( after a weeks or so) don't up too fast.

I take mine during the day first thing in the morning if not I do not sleep

 

[BellaSC]

What dose did you have the bad reaction to? Many need to start with a very low dose and have bad reactions to higher doses in the beginning.

I started with 4.5 mg...it was lowered to .5mg

 

[BellaSC]

If you did this, I would be very clear in your mind what your goal is and if you plan to continue going there as a patient. I challenged a local pulmonologist that I saw b/c he ran a test completely wrong (confirmed by my other docs) and then was very rude and mean-spirited and yelled at me and my husband and offered no follow-up.

My goal was to contest the bill and invalid test, and I succeeded and did not have to pay it, but I do not intend to ever see this doctor again. I will be seeing someone else mid-March for a proper pulmonary assessment. Do you plan to stay w/Montoya's clinic?

Thanks for your feedback @Gingergrrl ....
I'm going to send an email to the PA at Montoya's office.
I really believe that they need to understand the tremendous impact they can have on a patient and how much stress a negative interaction and visit like this can cause.
I'm very reasonable and have been a patient there for 8 years so I'll see how she receives my feedback.

 

[BellaSC]

Way too much to fast. It took me to go from 0.5 to 4.5 about 4 years if that helps you!!!! The way I know is becuAse I get super sleepy. I cannot stay awake ( not in a good way) That is my tell tell.

Also I think the start dose is ok but start every other day 0.5 then everyday ( after a weeks or so) don't up too fast.

I take mine during the day first thing in the morning if not I do not sleep

Thanks for the info @Inester7....
Kind of shocking to me that they started me at 4.5mg.
Has Naltrexone made a difference for you and how you feel?
I'm a high reactor to meds so I'm very hesitant and cautious about taking something that Ive had such extreme reactions to.

 

[BellaSC]

I was started on 1.5 mg of LDN (two years ago) and it made me incredibly ill with complete insomnia (did not sleep for even a minute the whole night) and insomnia is not usually a big issue for me. I did not tolerate it at all and many people do not.

Thanks @Gingergrrl ...I'm trying to understand what the benefit of this medication really is.

 

[BellaSC]

LDN is Naltrexone, just like low-dose-Aspirin is Aspirin. The "normal" dosage of Naltrexone is 50 mg, it was originally made in 50 mg pills for treating alcohol and drug dependence. It has no use for CFS in this dosage.

3 mg of Naltrexone is already low dosage, technically speaking. The CFS patients in my country have routinely been prescribed 3-4.5 mg to start with, which is what I was given as well.

Hi @JES .... Yes, I have blood type O. Why? That's interesting.....
Naltrexone affects Endorphins and I was told by the Pharmacist, actually affects T-Cells.

 

[BellaSC]

BellaSC
Sorry you had such a bad time even after you have been going there for so long ! We have not been to see Dr Montoya but have been through lots of doctors with this same attitude. Seems like most are getting like Misfit's dr.
If they could get by without seeing you they would. Hang in there.
Wondering what the R/X was that was causing hair loss as this is now happening to my son. He has been LDN for almost a year going up to 6mg. He had no real side effects ( which is good ), but it has not done anything for him either.
Maybe the reaction you got from the LDN ( even though it was bad ) could mean it will do something for you.
Hope the low dose works..

Hi @Billt ...The med that caused my hair loss was Plaquinil. It's an anti-inflammatory that is a Malaria drug. Also affected my psyche. I'm super sensitive. A friend told me that when I was on it, I had a "dark cloud" around me.
I'm normally happy and upbeat so that was a significant change and scary.
We have enough just handling CFS and our lives without meds that change our personailities for the worst.

 

[BellaSC]

isnt the normal naltrexone dose 9 mg?
it may depend on how long the disease is ongoing, to determine the dose.
would be very interesting how they did this.
you dont have blood type 0, @BellaSC ?

Hi @roller ...Yes, I do have type O blood? Does that affect the medication?
Stanford starts with a Naltrexone does of 4.5mg not 9.
The 4.5mg was what I had the horrific reaction to. and it was really bad....

 

[BellaSC]

That isn't very encouraging that they prescribed 4.5 mg as a starting dose! I know someone who was hospitalized from a 3 mg dose--most of us just can't tolerate such high doses in the beginning. The person who was hospitalized did really well though on a very low dose and later titrated up successfully.

Thanks for your feedback @Sushi ...After I took the Naltrexone last week, I was so incredibly ill, I could have probably been in a hospital. It was awful. It took me calling the pharmacist who said to start with .5mg and very slowly work up from there. I'm pretty nervous to even take any of it -even at.5mg after the extreme bad reaction I had.
Seems a bit irresponsible of Stanford to start at 4.5mg...unless I'm an anomaly and everyone else adjusts to it just fine.

 

[Groggy Doggy]

@BellaSC

My experience with a PA at the Stanford ME/CFS clinic was positive. She was polite, concerned, upbeat, and helpful. She was also a good listener. Maybe you could express your concerns and asked to be see by another PA at the clinic?

Regarding LDN, the PA recommended the following:

(LDN compounded to 1 mg per capsule)
Instructions:
1 capsule daily in the morning x 1st week then, if tolerating increase to
2 capsules together daily in the morning x 1-2 weeks then if tolerating, increase to
3 capsules together daily in the morning x 1-2 weeks then if tolerating, increase to
4 capsules together daily in the morning and stay at this dose.

Stay at 4 mg daily for 1-2 months, then we will consider changing the Rx to 4.5 mg capsules.

 

[Seven7]

Thanks for the info @Inester7....
Kind of shocking to me that they started me at 4.5mg.
Has Naltrexone made a difference for you and how you feel?
I'm a high reactor to meds so I'm very hesitant and cautious about taking something that Ive had such extreme reactions to.

I HATED HATED HATED HATED LDN, at $85 dollars / month I still do. To be honest @Shushi was the one that gave me hope so I sticked with it and I am glad I did (another thing to thank you for @Sushi).

I reacted so strongly to LDN, I slept for days to no end and not in a good sleep was like me being out completely in the brain. But kept awake during the day. But I think some time in I was like this crap is good for nothing and I noticed that I had less energy. So no I did not noticed anything on it. I noticed bad when off of it after a while. So I still keep on it. Another thing is I struggle with low Ts and NKs cells and when I did up the LDN my numbers came up a bit and that was the only changed I did.

It was given to me for pain, to be honest did nothing for my pain. I just feel more energy while on it so I am glad I stayed w it. I had to increase SLOWWWWWWWWWWWWWW I mean years so I didn't follow what others said and just did what felt ok. I react extremely severly to medications so I start very low and slow.

 

[BellaSC]

@BellaSC

My experience with a PA at the Stanford ME/CFS clinic was positive. She was polite, concerned, upbeat, and helpful. She was also a good listener. Maybe you could express your concerns and asked to be see by another PA at the clinic?

Regarding LDN, the PA recommended the following:

(LDN compounded to 1 mg per capsule)
Instructions:
1 capsule daily in the morning x 1st week then, if tolerating increase to
2 capsules together daily in the morning x 1-2 weeks then if tolerating, increase to
3 capsules together daily in the morning x 1-2 weeks then if tolerating, increase to
4 capsules together daily in the morning and stay at this dose.

Stay at 4 mg daily for 1-2 months, then we will consider changing the Rx to 4.5 mg capsules.

Hi @Groggy Doggy -

Would you send me a private message? I tried to send you one and apparently I'm not very adept on this site.
Wanted to chat a little further about Stanford and the fact that it sounds as though your PA did a good job when prescribing the Naltrexone.
Thanks! @BellaSC