Help – 2 questions

[vinny]

I have psoriatic arthritis which I am treating with Minocycline and Diclofenac(volteran). In feb I also added low dose naltrexone along with a host of herbal supplements. I am free of static pain and am playing golf again. Rheumatologist are real problematic in their relations with patients. They consider us all stupid. I only went to one, and it almost ended in physical violence on my part(which I was not capable of at the time.) The dermatologist was no better. I am being treated by my Internist who understands more then what the drug companies tell him to prescribe. If I can make a case for my treatment program he will go along with it. He has been my doctor since 1999 and he is a jewel, but they are hard to find.

vinny

Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008

[Parisa]

Vinny,

That's the whole irony of these diseases.  Here we have diseases that actually have specialists for them and guess what?  The last person you want to go to is that specialist because they'll maim you or kill you with their treatment.

 

[Maz]

[user=13]Parisa[/user] wrote:

That's the whole irony of these diseases.  Here we have diseases that actually have specialists for them and guess what?  The last person you want to go to is that specialist because they'll maim you or kill you with their treatment.

 

Hi Parisa,

I just about choked on my cookies when Weinstein, a rheumie at Washington Hospital Center centered the theme of his presentation around the priniciple that in his clinical experience chronic Lyme disease was largely a psychosomatic state. 😯 Even the one grumpy-looking IDSA panelist questioned him at end and asked if he didn't think he was making a mockery of patients who were very ill….or words to that effect.

The obvious question is: Since when do rheumatologists make psychological evaluations of patients and since when is the opinion of any physician to be taken as evidence-based medicine? Surely that is an entirely different medical specialty?!!! 

You've probably already watched it, but if you want to have a good teeth-gnashing session, this'll do it! He's the third to last speaker, right before the Conclusions.

http://webcast.you-niversity.com/idsaArchives/

Peace, Maz

[Parisa]

Maz,

I haven't watched it yet.  I was waiting for it to hit the Archives.  I did read some of the summaries however and know that I'll probably only be able to stomach it a little at a time and probably not right before bed either or else I'll be up all night.  I don't know where doctors think that having these diseases is fun and how the patients believe their joints and muscle into being stiff.  Some doctors shouldn't be doctors – I wish there was some type of test they would make them take before they could become doctors. 

[hotspur2904]

I guess I'm hopeful being a fairly practical and logical sort of person that I can appeal to that side of my rheumatologist when I see her next week.  If that doesnt work I'm seeing my family doctor the following day. I dont know if she's ever seen a grown man beg and grovel (if my knee's are up to it!) but I will do what I have to do.

Katie on this board has sent me a briefing she gave to her doctor outlining what treatment she felt she needed.  It's been really helpful however I am rather concerned about asking for IV AP.

Having had PsA for 2.5 years, can anyone suggest what the best low dose I need to start on and whether I need IV AP?

I know it varies from person to person however I dont want to scare my doctor off with too much treatment when if I can get away with it she can just put me on a prescription for Minocycline.  Doe's my logic make any sense?

Thanks everyone for all your feedback, as always it's been really useful

Simon

[lynnie_sydney]

Simon – just a layperson's opinion here, of course. However, IV's are generally indicated/helpful when someone has had longstanding disease. That usually means that their body (particularly their gut) is in a hyper-sensitive state through having progressed through a plethora of medications over the years. One great advantage of IV's is that they by-pass the sensitised gut. Scleroderma is another instance where IV's are often prescribed when 'time is of the essence' for a response. Others may have useful info to add to this.

In my (very layperson's) opinion, I would not be overly concerned about the IV aspect. They may be very difficult to obtain in the UK. Many of us (myself included) have done exceptionally well on oral regimes only. Another former Australian Road Back network contact a few years ago, Craig Cobb, had PsA and went into remission on a pulsed regime of MWF oral minocycline alone together with a few changes to diet. 

Here is a link to a section in the Historical Protocol in the Physician's Pages on the main site that speaks about beginning the therapy and when IV's are used. Best, Lynnie

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Beginning-23522

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[hotspur2904]

Thanks Lynnie, thats really useful.

S 🙂

[Joe M]

[user=13]Parisa[/user] wrote:

Vinny,

That's the whole irony of these diseases.  Here we have diseases that actually have specialists for them and guess what?  The last person you want to go to is that specialist because they'll maim you or kill you with their treatment.

According to this and your other posts on this thread, rheumatologists are sadistic people who think you are happy to have RA and the condition is all in your head, and to get even with you they will intentionally give you medicines they know will maim or kill you.  😯  The horrors!   

[Trudi]

[user=20]Joe M[/user] wrote:

[user=13]Parisa[/user] wrote:

Vinny,

That's the whole irony of these diseases.  Here we have diseases that actually have specialists for them and guess what?  The last person you want to go to is that specialist because they'll maim you or kill you with their treatment.

According to this and your other posts on this thread, rheumatologists are sadistic people who think you are happy to have RA and the condition is all in your head, and to get even with you they will intentionally give you medicines they know will maim or kill you.  😯  The horrors!   

Joe–

You have read waaaay too much into Parisa's post.  Sadistic–oh come on now!!

Based on the experiences of the majority of the people on this board who have a problem with their rheumatologists, they encountered those that were close-minded to alternatives and insisted on prescribing the heavy hitters without first honoring the request of giving AP a try.

I have had my share of doctors who fit your description to a T (excluding sadistic).  You can be very grateful that your encounters have been positive and your treatments relevant.

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Author]

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