Saw my Rheumatologist today

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CajunGrl
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Date Joined Mar 2009
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   Posted 4/8/2010 11:23 PM (GMT -6)   
I really, really liked him. He had looked at all of my bloodwork before he even came in the room. It was over 10 pages long! He knew everything that was going on with me. I was diagnosed(for sure) with Fibromyalgia by him. Before, doctors "thought" I had it, but I had never gotten a sure diagnosis. Now I do. He did the Fibromyalgia presure point test and all but one hurt me. I couldn't believe how much it hurt when he was barely pressing in that area. He put me on Savella. I hope it helps with all of this pain.
 
I am also being tested for Lupus and RA because my fingers swell and are always stiff. He thinks there is something else going on and of course, he doesn't think i have Lyme disease, lol. I expected him to think that so I will just sit back and let him run these tests since Lyme can trigger or mimic these diseases. It's better to know anyway. So, we will see. Oh, and he is checking for Lyme disease again through a regular lab. I told him that I trusted Igenex and that the test will probably come back negative because these labs don't check for all significant bands. I'm not sure he knew what I was talking about, lol. Either way, what I wanted was to get the pain under control, and since I now know it is Fibro, I can only hope that the medicine works.
 
I really liked him though. He was very smart and knew alot....except for Lyme Disease, but I'm not worried. I will deal with Lyme Disease the natural way and on my own.
 
Anyway, I'm babbling. I go back in two weeks for results.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


stutterbug
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Date Joined Jul 2007
Total Posts : 478
   Posted 4/9/2010 5:41 AM (GMT -6)   
thanks for the update. I am going to use this same strategy when I go to the Rheumatologist.

betterhealth
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Date Joined Mar 2010
Total Posts : 230
   Posted 4/9/2010 6:04 AM (GMT -6)   
Cajungrl,

I'm glad that you found a doctor that you are comfortable with. I'm seeing a new LLMD in NY later this morning and anxious to get a new opinion from someone who actually knows about Lyme disease. While I like my ID and neuro doctors and believe they have been trying to help me, I don't think they know much about Lyme.

Just curious, did you start with lyme and then develop Fibro or were you diagnosed in the reverse order?

Hope that the new meds help to relieve your pain.
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Gabapentin, Vitamins B,C & D
 
 


nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 4/9/2010 12:07 PM (GMT -6)   
Dear CajunGrl,

It's so nice to have a doctor that you feel good about who is thorough and listens to you! It always amazes me that it is so common for Lyme disease to trigger fibromyalgia! Sorry that you have fibro, of course, but it's a good thing to have an actual diagnosis....just so you know why you hurt and which meds might help you.

I'm glad he's testing you for other conditions, too....unfortunately Lyme can trigger autoimmune disease as well.

I hope that you're feeling better soon!
(((((hugs))))))
JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, Doxycycline, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


Razzle
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Date Joined Aug 2007
Total Posts : 4396
   Posted 4/9/2010 1:31 PM (GMT -6)   
Fibromyalgia is not a disease, it is a collection of loosely associated symptoms. Many things can cause these symptoms, including magnesium deficiency, hypothyroid, adrenal fatigue, Lyme/coinfections, etc. If I were you, I would ask for these other things to be ruled out first before accepting the diagnosis...but that's just my humble opinion.

When I was told I had Fibromyalgia (actually, I had Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome instead, but the doctor was...less than savvy...), I started to read about it and discovered many interesting things about what else could mimic the pain, stiffness and fatigue. Nutritional issues came up during my research, and so I started taking more magnesium -- the "fibro" went away shortly after. So was it a magnesium deficiency, or magnesium-responsive Fibro? I'll never know...I'm just glad the magnesium fixed the problem...wish Lyme was that easy to "cure," LOL!

Take care,


-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.

Post Edited (Razzle) : 4/9/2010 1:34:30 PM (GMT-6)


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 4/9/2010 7:55 PM (GMT -6)   
Thanks everyone!

Razzle- Thanks for the info:)
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


bablymers
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Date Joined Oct 2006
Total Posts : 1458
   Posted 4/10/2010 4:31 PM (GMT -6)   
Hi CajunGrl,

I think we may use the same style stategy! I use the "regular" docs for what I can because it is usually covered by insurance and gives me useful information. Then I take the info to my lyme docs and it helps them know what other tests etc. they may want to add, to get the whole picture. A lyme-friendly nurse practitioner once told me a funny "joke". She said "Use 'em and lose 'em"-----meaning use them for what they're good for (how they will be useful), and then "dump" them when they are no longer useful or cooperative. This has worked for me so far!

Hope you get all the help you need. Best wishes, bablymers mom

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4282
   Posted 4/11/2010 9:25 AM (GMT -6)   
Hi CG,
 
After reading about all your symptoms I would bet money (not a lot of money, LOL!) that you have an overload of ammonia in your body that is causing all your symptoms including all that pain..   Of course I'm not a doctor so I don't know for sure but your symptoms just scream at me "ammonia overload!"
 
I suggest buying a bottle of his Neuro-Antitox CNS/PNS formula, take twice the recommended dosage for 1 month and I bet many of your symptoms start going away..  Just a gut feeling...
 
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 4/12/2010 12:09 AM (GMT -6)   
Hey Denise,

You are always thinking about me and trying to help. I really appreciate that. I am most probably going to do Dr. J's protocol but not until after I move and I am settled. I don't want to be completely off of my feet while moving. I will probably contact you many times before, during and after, so i hope you're ready, LOL.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


blessings723
Regular Member


Date Joined Oct 2009
Total Posts : 289
   Posted 4/12/2010 9:28 AM (GMT -6)   
Hey Cajungrl, i'm glad you liked your new doctor and that you are still thinking of treating naturally! My best on your journey and will look forward to reading about it. :)
I refuse to stay sick! Period. 
 
 


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 4/12/2010 7:36 PM (GMT -6)   
Hey finding,

Thanks hun! How have you been? I haven't seen you in a while.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


scorpio1960
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Date Joined Jan 2009
Total Posts : 914
   Posted 4/13/2010 7:25 AM (GMT -6)   
I'm glad you like the new doc...that's so important. I was misdiagnosed with CFS many years ago and then Fibro because body pain was later added to the mix of symptoms I was experiencing. When I was on iv antibiotics (better part of the last year) the body pain disappeared but since stopping iv's it has started to come back. I truly think lyme is the cause of Fibro in many cases and once the lyme is under conrol the Fibro will no longer be an issue. If the rheumotologist can help keep your fibro symptoms in check until you can treat the lyme that's great. I'm continuing with oral antibiotics but will be adding a herbal protocol shortly too. Good luck CG.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35740
   Posted 4/13/2010 3:04 PM (GMT -6)   
Hey CG!!
So glad you found a doc that you are comfortable with! I was under tx for my fibro for a while, but then started butting heads with the doc - he had a real attitude problem! Most of the 'fibro' pain I was dealing with has subsided - for now anyway.
I would be interested in how well you do on the Savella, as it has only recently been approved for use here in the U.S.
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 4/14/2010 12:27 AM (GMT -6)   
Hey Traveler,

Yes, it has only been approved for about a year now, which is rather scary. I read some good reviews from patients that have been on it though, so that makes me feel better. It seems to have less side effects than Lyrica. I still haven't started it yet because the nurse told me that I could take it with Tramadol. Well, I started looking up the drug reactions and NO....I cannot take it with Tramadol. I risk getting serotonin syndrome!! So now, I am waiting for the doctor to call me back and tell me what to do. The other nurse told me to get off of Tramadol so that I could start the Savella. Ugh.....did she forget that I am in PAIN ALL DAY LONG! Grrrrrr! I like the doctor, but I'm starting to wonder if his staff knows what they are doing. I could have been in real trouble taking those two together.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35740
   Posted 4/14/2010 8:13 AM (GMT -6)   
Oh CG!!!!
I know what you mean about the nurses & staff not being all there!! I have a pretty good GP, but the staff & nurses quite often get in the way. It sometimes seems as if they are actively working against the doc or me! It's a shame that we, as patients, have to look up drug interactions & such so that we don't end up in the E-room!! Fortunately I have a really good Pharmacist that is on the watch as well!!

I do hope you are able to figure out a way to get from tramadol to Savella safely. I am quite interested in how well Savella works for you, as I go into a pain cycle from time to time & so far only hydrocodone (& it has to be at least 10mg) will even make a dent in the pain. I still wind up sitting around like a bump because it hurts too bad to walk or do anything.

As always, I wish you the best of luck!!! smilewinkgrin
Trav.
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


Kodak
Regular Member


Date Joined May 2010
Total Posts : 74
   Posted 5/19/2010 8:00 AM (GMT -6)   
Hey betterhealth,

I'm in NY. Can I ask what LLMD you are using? Is that allowed on this forum?

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 5/19/2010 4:08 PM (GMT -6)   
Kodak,

He/she can list the initials of the LLMD on here but not the entire name. We do this to protect our LLMD's. You can send betterhealth an email if they have it listed on the forum or vice versa. If you need help adding your email, let me know.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 5/19/2010 4:15 PM (GMT -6)   
Kodak,

Email me at betterhealth@healingwell.net and I will send you Dr. C's contact information.

Gary
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Amoxicillin, Azithromycin.
 
 

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