Disappointing Visit to Dr. Montoya's PA

Mary

Mary

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Clerner said:
Yes, it does make you sleepy at first. I had to take naps. Slowly working up in dose and giving it about 3-4 weeks it has been amazing! I had increased energy and less pain.
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I'm very glad it helped you! FWIW, it didn't make me sleepy - it literally drained all my energy such that it was very difficult to function, even at a very low dose. Naps did nothing to help my energy loss. We're all so different!

Also, FWIW, right now B1 is helping my energy a lot, though I have to make sure I have enough phosphorus/phosphate and a good B complex which I am getting from brewers yeast - it's an experiment! which so far is going well.

I hope the ldn continues to help you --
 
Billt

Billt

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BellaSC said:
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.
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Thanks BellaSC.
You are so right ! So many get here for so many different reasons and meds can just add to the problems sometimes
 
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IreneF

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I saw one of the PAs at Stanford today, and she was fine. She listened to me, looked up my nose and said my turbinates were red, felt my lymph nodes, etc. She prescribed LDN and suggested going off Plaquenil. (I've got severe hair loss and now I wonder if the Plaq. is exacerbating that.) We talked about antibiotics for my sinuses, but I don't want them.

The clinic has difficulties because it is over-extended.
 
B

BellaSC

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69
IreneF said:
I saw one of the PAs at Stanford today, and she was fine. She listened to me, looked up my nose and said my turbinates were red, felt my lymph nodes, etc. She prescribed LDN and suggested going off Plaquenil. (I've got severe hair loss and now I wonder if the Plaq. is exacerbating that.) We talked about antibiotics for my sinuses, but I don't want them.

The clinic has difficulties because it is over-extended.
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Hello @IreneF -

I had hair loss from the Plaquinil and it can be one of the side affects....Mine is slowly coming back so there's hope. :)
 
Stretched

Stretched

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Misfit Toy said:
...

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.
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This galls me to hear this. You, me, and other PWCs, et al deserve better; and you can likely get some remedial
satisfaction with a well crafted letter and copies... .

IMO, you and any other trusting patient who has been mishandled when granting trust should write this (surgeon) up in a complaint letter, re this doctor not conducting himself in accordance with generally expected higher standards (cough, mine) expected of Medicine, neither in your community nor with the precepts of surgical practice, nationally.

For maximum impact send the original to the hospital administrator and show copies (and send them) to the AMA (national), The Secretary of State (yours), the local Consumer Affairs office, and any other related governing, liscencing or overseeing body.

You can bet your grabbit that he'll mend his ways towards a more professionally personal
and caring modus operandi - and you!

...Don't you feel better just getting the wheels in motion? :thumbsup:
 
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ebethc

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BellaSC said:
I don't do well at all with meds and had a horrible reaction to an anti-inflammatory they prescribed last year. It changed my personality and I started to lose my hair. So not a big fan of random meds.
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can you say which medicine caused these symptoms? colchicine? i'm really sensitive to meds, and whatever you took sounds like one that I should avoid!

also, so sorry about your awful experience w LDN...
 
frog_in_the_fog

frog_in_the_fog

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When I visited the Stanford clinic, I was effectively told that if I didn't fit one of the profiles, they couldn't help me. I hope I fit one of their patient profiles...
 
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Sidney

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I have only had 2 visits to Stanford so far, and it has been a completely positive experience - insofar as anything dealing with something so varied and unexplained as CFS can be...

I saw a very nice PA , who spent a long time asking many many questions, kept reassuring me that she'd seen one thing or another that was distressing me ( I was naturally beginning to crash, from the exhaustion of just getting there). She ordered many blood tests, which were done, on the spot, with the most sympathy and least distress I've ever experienced ( kind nurse made me lie down, and I didn't feel anything of 13 test tubes being filled.)

I got the results, which of course I couldn't read, within a few days, and had been booked for a return visit in a month. I then was given a diagnosis of CFS based on 2 lurking virii (?), prescribed Valtrex, and another test, for a genetic condition, (positive) and I don't go back for 4 months. But she is very reachable by email.

I have somehow felt more secure since being there ; not that I expect to be cured! It is knowing that they see so many fellow sufferers, and arevery interested in learning to understand the whole thing. So that even though I feel that my condition is deteriorating, I feel that I'm in touch with someone who knows something about what is going on! Not nearly enough - but it gives hope.

Like most in the field, I think Stanford proceed by trial and error - but who can do more, given how everyone reacts completely differently to different treatments, even though we have the same basic symptoms. My rheumatologist, who is wonderful, and has seen me through several autoimmune situations, recommended Montoya, and although i didn't get an appointment with him, I am so grateful that I am there.
 
frog_in_the_fog

frog_in_the_fog

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Groggy Doggy said:
Interesting, that's new, what is the criterion to fit into one of their patient profiles?
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Stanford has a long waiting list, so they likely have to pick and choose those individuals that will likely benefit from their treatments, that is at least my interpretation based on my conversations; I have never known anyone the clinic has actually turned away. I was told by my assigned PA that they look for viral causes of a patients autoimmune dysfunction. My case is tricky because there could be non-viral causes for my illness, but my PA agreed it was worth exploring all the possibilities. I often feel I am grasping at straws, I am sure many of you good people know the feeling.
 
Mary

Mary

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Justin30 said:
Is this from the Brewers yeast?

Do you know how to increase phosphates if they are low?

Thanks in advance
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No, the brewers yeast did not increase my phosphorus. Actually, it (the brewers yeast) ended up making me extremely sensitive to MSG so I had to stop it, and it raised my blood pressure too. :bang-head: I went back to Jarrow B Right for a B complex.

I read about foods that are high phosphorus and found that dairy products were among the highest. So I tried kefir and yogurt and both helped. I had to take 2 good-size servings a day to notice a difference. I also bought monosodium phosphate from Swanson Vitamins and took a low dose of that. I ran the monosodium phosphate by my CFS doctor who okayed it, but in a low dose, and he was extremely knowledgeable about nutrition.

I also have become hooked on sunflower seeds which are high in phosphorus. I buy them with the shells on. David's brand makes a good one that has large seeds and lower sodium which I really like! but the shells keep me from eating too many too quickly. I think pumpkin seeds are high in phosphorus - if you do some research you'll find what foods are highest.

I also recently increased my B12 and folate and had the same reaction - initially felt better, and then my energy drained and it wasn't low potassium, which I stay on top of. I had slacked off on the kefir and yogurt and monosodium phosphate and sure enough, when I added them back in, my energy came back.

Here's an article on refeeding syndrome which I think essentially is what can happen to many of us when we start to get nutrients we need. As you will see, hypophosphatemia is the hallmark of refeeding syndrome, but low potassium and magnesium are also very common. Also, everything I read about phosphorus talks about getting too much of it. Hardly anyone mentions low phosphorus, just as when you read about potassium, they all say be careful! don't get too much, when low potassium is much more common. Thoug I do think low phosphorus is generally uncommon. Here's the link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/
 
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Mary

Mary

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Webdog said:
Jarrow B Right contains folic acid, which is a problem for many with MTHFR issues.
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They've changed their formulation. It now contains "Folate (as QUATREFOLIC®(6S)-5-methyl-tetrahydrofolic acid glucosamine salt)" Despite the name "QuatreFOLIC", it is a form of methylfolate and considered biologically active. http://mthfr.net/l-methylfolate-methylfolate-5-mthf/2012/04/05/

I'm sure they changed their formulation in response to customer demand! :nerd:
 
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