LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Rheum doc

 - UBBFriend: Email this page to someone!    
Author Topic: Rheum doc
average joe
LymeNet Contributor
Member # 26091

Icon 1 posted      Profile for average joe     Send New Private Message       Edit/Delete Post   Reply With Quote 
I cancelled my appt for a rheum doc for last week. My thinking was that I had all the tests already that they would have given and undoubtedly would have had a dx of RA CF or Fibro.

Was this a good move?? I used to make my mind up and never waiver from my decision but this wacked out disease has me questioning every move I make.

[ 08-24-2010, 08:27 PM: Message edited by: average joe ]

--------------------
If you play at the beach, expect to get some sand in your shorts [Smile]

Posts: 223 | From central pa | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Rheumatologists do not treat lyme (most have no clue about the complexity of lyme and usually never even consider it). The same is usually true for most MDs and most specialists in the average medical scheme.

As you are on this site, I assume you either have or wonder if you have lyme.

See an ILADS-educated Lyme Literate MD (LLMD). Go from there. An ILADS-educated LL ND (naturopathic doctor) or LL L.Ac. (acupuncturist) or similar medical professional may be great support but, above all, whomever you see needs to be "ILADs-educated" and extremely lyme literate.

===============

www.ilads.org

ILADS
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
VERY good move! Don't look back!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95809 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Haley
Frequent Contributor (1K+ posts)
Member # 22008

Icon 1 posted      Profile for Haley     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm sure that there are some Lyme literate rheumies out there but probably not too many.

I'm biased because a Rhuematologist saved my life and figured out which infections I had including Lyme.

My first thought when someone told me to go see him was - "oh no, another doctor to tell me I'm fine or I need an anti-depressant."

I guess my point is that you don't know where the road will lead with some of the decisions we make. I too often question my decisions when it comes to Lyme.

I trust that the decisions will lead me closer to an answer, one way or another.

Maybe you could call and ask if the Rhuematologist treats any Lyme patients.

Posts: 2232 | From USA | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
average joe
LymeNet Contributor
Member # 26091

Icon 1 posted      Profile for average joe     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yes I am currently being treated for lyme and co by an llmd who is ilads trained. I have other posts on here wondering about high enough dosages of abx ect.

When the rheum docs nurse asked me why I wanted to cancel my reply was that I am currently being treated for lyme. If you want to end a conversation with a doc quickly just tell them you have chronic lyme [lol]

I tested positive on the elisa then neg all bands on a quest western blot. LLMD sent me to Igenex for the lyme test re-do. Had 3 pos bands and some ind on the IgG and 4 bands pos and I think 2 ind on the IgM. This might be backwards. Would you believe I forgot to get a copy!!!

Keebler I do appreciate this site where people can relate to the mess called lyme. One of the issues with me is that my wife who is an RN and traditionally trained doesn't buy into or understand the whole chronic lyme thing.

This makes things extremely stressfull so the forum is really my only outlet. Based on some of her complaints I am reasonably sure that she may have lyme and co also. She has fatigue, sore knees and ankles, is always complaining how badly the soles of her feet hurt, ect. She is even having radical mood swings and anger issues which isn't typical of her but won't get tested.

So again I appreciate this forum and the wealth of knowledge. It's really cool that those who are cured so to speak hang around and look out for the rest of us. I can't thank you folks enough. [bow]

Please forgive the random nature of the above thoughts.

--------------------
If you play at the beach, expect to get some sand in your shorts [Smile]

Posts: 223 | From central pa | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Well, regarding your wife's training, the two of you will just have to not discuss this then. Do what you need to do to get well.

If she wants to learn more, there will be a place for the two of you to discuss that. If not, this is just a part of your life you'll have to keep separate, like a job or hobby. Don't set yourself up for judgment or criticism and don't expect her to understand.

If that is how she needs to approach this, you'll just have to accept that is her comfort zone and take the best care of yourself - and make all your own decisions - on your own.

Ideal? No. But it is just the way it is. She may learn more or not, but you are not dependent on her for your own decisions and progress. The two of you are just in different places and let that be however it can be for the best harmony. Not discussing it may be the best approach, then.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Whether she "buys into it" or not, it's real. If she can't have the energy to learn anything new, then that is just where she is, though.

You might just print this out and give it to your wife - and then let it go. Don't expect anything from her. If she wants to engage and learn more she can. If not, your success need not be hampered. Don't waste your energy ever trying to convince anyone of anything. Too many years - too many tears- involved in all that. It also lets others off the hook to decide if they want to learn or not. We can hope but we can't push.

This article is from a NURSING JOURNAL. Print it out for your wife, maybe with a note such as "hoping this will help explain the complexity of chronic lyme"

=======================

www.clinicaladvisor.com/Controversy-continues-to-fuel-the-Lyme-War/article/117160/

From the May 2007 issue of Clinical Advisor

CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
There are a lot of RN's on this site. You might just drop that info at your house one day!

Also may drop the hint that she may have bartonella. She may be more receptive to that idea. The painful feet will get to her sooner or later!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95809 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
average joe
LymeNet Contributor
Member # 26091

Icon 1 posted      Profile for average joe     Send New Private Message       Edit/Delete Post   Reply With Quote 
No indeed, I need to go with my gut instinct here. If I had listened to the traditionalists I probably would be in a wheelchair by now.

I still need to work on her when the opportunity presents itself though. I don't want her to get as bad as I was at first.

This will be a slow process and will mention it only when she seems receptive. That does happen occasionally. Although I will tell you she looked at me like I had 3 heads when I told her I am going to build a rife machine lol. My son thought it would be cool but the wife was like yeah right are you going to signal the aliens [shake]

I know those are controversial but I am open to trying it. What is there to lose except a couple of bucks

--------------------
If you play at the beach, expect to get some sand in your shorts [Smile]

Posts: 223 | From central pa | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
average joe
LymeNet Contributor
Member # 26091

Icon 1 posted      Profile for average joe     Send New Private Message       Edit/Delete Post   Reply With Quote 
Wow Haley you really have a tough hill to climb there. I don't get it either. You would think folks in the medical field would always try to learn and grow. But it seems modern medicine has hit a wall.

After all back in th 80's aids/ hiv was a certain death sentence. Now people are living indefinately with it given proper treatment. This happens through a quest for knowledge and certainly experimentation which can only be driven by pioneering curiosity and the basic human instinct to adapt and overcome.

One can go on and on about illness and diseases that were unheard of until of course they became more and more prevelent leading to new medications, vaccines and treatment protocols.

Thank god for those aforementioned pioneers. If we would have through the ages lived solely by what was generally accepted or believed we would still use snake oil as a catch all cure. Now we all know how well that worked.

Good luck working on him. Maybe print out a few dozen articles and just conveniently leave them lying around. You can tell him you were just doing research on your condition. I think I might even follow my own advice there lol. Sooner or later even if it's bathroom material he might end up reading some of it

--------------------
If you play at the beach, expect to get some sand in your shorts [Smile]

Posts: 223 | From central pa | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
marypart
LymeNet Contributor
Member # 27012

Icon 1 posted      Profile for marypart     Send New Private Message       Edit/Delete Post   Reply With Quote 
One of the best LLMDs in the Middle Atlantic region is a rheumatologist in northern Virginia. She is dedicated enough to treatment of Lyme and other antibiotic protocols for arthritis that she had to vigorously defend her license to the Medical Board in 2005. So there are some who are in-the-know. She is very big on alternative therapies as well.

-Mary

--------------------
Son, 26, Dx Lyme 4/10, Babs 8/10
Had serious arthritis, all gone.
Currently on Valtrex
Daughter, 26,bullseye 7/11
arthritis in knees, cured and off all meds. .
Self:Lyme, bart, sxs gone, no longer treating.

Posts: 496 | From Washington, DC | Registered: Jul 2010  |  IP: Logged | Report this post to a Moderator
LightAtTheEnd
LymeNet Contributor
Member # 24065

Icon 1 posted      Profile for LightAtTheEnd     Send New Private Message       Edit/Delete Post   Reply With Quote 
Good move cancelling your appointment. Any rheumatic symptoms you have are likely caused by Lyme, and even if they weren't, you wouldn't get the right help from a doctor who doesn't know all about Lyme. Lyme messes up so much in your body that even if you have a problem that is not caused by it or coinfections or opportunistic infections, treating that problem needs to take the effects from and on the Lyme into consideration.

Maybe your wife will become more receptive when you get better and she gets worse.

Re: aliens, I have often though of the tick as the "mother ship." [Smile] Good luck with the Rife machine.

--------------------
Don't forget to laugh! And when you're going through hell, keep going!

Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009.

Posts: 756 | From Inside the tunnel | Registered: Jan 2010  |  IP: Logged | Report this post to a Moderator
gmb
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
If it don't cost you more than a modest co-pay I would return to the rheumatologist for one last visit to inform him/her of the diagnosis and treatment planned. Let her know you'll keep her in the loop, then run away and just don't make another appointment. You don't know if you'll ever need him/her again, don't burn the bridge.

That's the way I handled seeing my rheumatologist who initially diagnosed my joint pains as gout, before I could get an appointment with an LLMD.

IP: Logged | Report this post to a Moderator
average joe
LymeNet Contributor
Member # 26091

Icon 1 posted      Profile for average joe     Send New Private Message       Edit/Delete Post   Reply With Quote 
gmb, I didn't really burn the bridge. This was the 1st appt after a referral from my PCP. The first I came down with big time symptoms was back in march/april time frame.

After all the standard lupus, ms, ra ect tests my doc didn't know what else to do with me.

I did have a positive elisa for lyme for which I got a whopping 3 week dose of doxy.

When the western blot came back neg through quest my pcp said that 3 weeks was enough even though I encouraged him to give me another 3 week supply.

Interestingly enough, my PCP said that he has heard of docs giving only a 10 day supply of doxy for lyme. Since I have no idea when I was bitten, we all know that in either case it's not nearly enough.

Since the PCP couldn't find anything else he referred my to the rheum doc. He said that he did have a patient whos rheumatoid factor was ok but ended up having RA anyway. This was termed sero-negative RA

My next question to him then was if you can have sero-neg RA why can't you have sero-neg lyme??
He wasn't sure how to answer it.

Anyway he referred me to the rheum doc whos scheduling 3 months out!! In the meantime I had a zillion more tests and was able to get an appt with my LLMD. I had already been in treatment by the LLMD for over a month before I could see a rheum doc?? Go figure

There was no doubt in his mind that it was lyme&co and subsequent testing through IGX showed positive.

So long story short I never saw the rheumatologist to begin with. I cancelled because I have a dx and figured they would put me through all the same tests and undoubtedly diagnose me with fibromyalgia or something along that line

Now in all fairness my PCP is really cool. He has always hit everything right on the head in years past. I did tell him that I would be going to see a lyme specialist and he was at least receptive to the idea.

He in so many words told me sometimes you need to think outside the box with medicine and also understood why I needed to look in a different direction as he couldn't provide any answers.

That in itself confirmed he is open minded, just uneducated about the lyme thing. His practice whas also bought out by the local hospital so even if he wanted to try to treat it outside of standard guidelines big brother would be watching

Thats my story and I'm stickin to it [bonk]

--------------------
If you play at the beach, expect to get some sand in your shorts [Smile]

Posts: 223 | From central pa | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
"My next question to him then was if you can have sero-neg RA why can't you have sero-neg lyme??
He wasn't sure how to answer it."

+++++++++++++

good one! [Big Grin]

Your PCP does sound like a keeper though.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95809 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
17hens
Frequent Contributor (1K+ posts)
Member # 23747

Icon 1 posted      Profile for 17hens     Send New Private Message       Edit/Delete Post   Reply With Quote 
average joe, do you live near me?

--------------------
"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26

bit 4/09, diagnosed 1/10

Posts: 3043 | From PA | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.