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LiveLife30
New Member


Date Joined Nov 2012
Total Posts : 5
   Posted 2/13/2013 10:51 PM (GMT -6)   
Was recently diagnosed as having developed RSD secondary to lyme disease. I am really not doing well right now. Has anyone seen or heard of someone with both RSD and lyme?  Does anyone know someone who achieved remission from the RSD? Is a cure possible for RSD? Im seeing a LLMD finally and will be treating the lyme aggressively, but really need some hope in terms of RSD. It feels like a life sentence.
 
Thanks!
 
 

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 13220
   Posted 2/14/2013 9:06 PM (GMT -6)   
"RSD is an older term used to describe one form of Complex Regional Pain Syndrome (CRPS). Both RSD and CRPS are nerve disorders characterized by chronic severe burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling and extreme sensitivity to touch."

If this is what you are talking about, Lyme causes something very similar and could be misdiagnosed as RSD.

I've never been diagnosed with RSD so I can't say forsure I've had it, but I've had what is described here -although I don't know of any bone changes other than osteopenia - and have healed quite a bit, although I do have more healing to do. I've used a tincture called Avena Sativa (wild oats collected in the "milky" stage) which actually helps to heal nerves, and treats all kinds of nerve issues.

When I first started detoxing, I couldn't hardly stand the feel of my clothes (which I didn't hardly wear) against my skin because it was so painful. Even the sheets on my bed hurt me. It took a while but I was able to desensitize my skin and now I don't have any issues with it.
Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List" for Lyme disease.

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

Questions about what I've posted or just have questions? Please email me!!! Click on the blue envelope under my screen name

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 3951
   Posted 2/15/2013 9:32 PM (GMT -6)   
Yes, I had both. Well, I should say, HAVE both... But the RSD is currently in remission...and the Lyme/Bartonella are definitely NOT in remission...LOL!

So I was diagnosed with RSD in 1999, but it actually started in 1997. 2 years later, a lot of pain and a very aggressive physical therapy program got me into remission. I did not know about Lyme then.

Was finally diagnosed with Lyme in 2007. Then I found out Bartonella+Lyme can cause RSD in some people...so I think this is why I had the RSD problem.

My RSD is in remission, and it stays that way unless I get too ill and can't do any physical activity. Then I start getting the crushing sensation in my foot again...but it goes away quickly when I start exercising again.

So yes, there is hope for remission and I believe RSD can be cured if it is caused by Lyme/coinfections and the infections are treated by an experienced LLMD/LLND.
-Razzle

Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, Lupus, Osteoporosis, etc.; G-Tube
Meds: Flagyl, Domperidone, Claritin, Andrographis & other herbs, homeopathy, supplements, etc.

applewine
New Member


Date Joined Jul 2013
Total Posts : 2
   Posted 7/15/2014 9:21 PM (GMT -6)   
I found there is a person called Jessica R. Stevens who wrote on her blog that she has both. Best wishes because I don't think we can test for the possibility of these chronic infections. Be careful with treatment. I saw an Ld and may have developed paresthesias and weird skin stuff I'm still dealing with years after tribg 4 antibiotics on a six month treatment.

Girlie
Veteran Member


Date Joined May 2014
Total Posts : 969
   Posted 7/15/2014 9:56 PM (GMT -6)   
Before Lyme diagnosis, I had questioned whether I had RSD or CRPS - docs said no.

I do not have any swelling - but my skin is thin on my hand of the affected side, and it gets clammy, not dripping with sweat, though.
And that is my painful side (arm, shoulder blade, hand) -
but, now my right hand is clammy, too. I do not have skin sensitivity, either.

So, when I got positive lyme test, I let that go...but now I'm wondering again.
Physical therapy did not help my arm/hand...made it worse.
I have read lots about it, though, and even tried the DMSO gel on it.
Jeez...now i'm worried about that again.
Symptoms started Sept, 2013 (maybe sooner?) Started Buhner's protocol May 15, 2014
Igenex positive July 3, 2014
Doxycyline started July 4, 2014

Determined to beat this!!!

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 13220
   Posted 7/16/2014 8:50 AM (GMT -6)   
Girlie,
Often therapy like that will make us hurt more - one of the lovely gifts from Lyme disease that makes no sense. I would say that you should wait until you have healed from Lyme before you worry about it much. It will likely go away with treatment.

For help with the pain until then, have you tried using a heating pad on your shoulder/neck area? If it's the muscles then heat will work. Otherwise you will need to use ice to combat any inflammation in the area that is causing your pain and discomfort.
Herb only treatment for Lyme & Bart ended Dec. 2011 - no active symptoms -Herb only treatment for Babesia ended Dec. 2012 - no active symptoms
Healed from tick-borne infections, now healing from the damage they left behind.
www.healingwell.com/community/default.aspx?f=30&m=2977364

Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV

Questions? Please email me!!!

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 3951
   Posted 7/16/2014 9:18 AM (GMT -6)   
If you do have RSD, do NOT put ice on it!!! This damages the nerves more and causes more problems (per Dr. Hooshman, now retired, who was considered at one time to be the world's expert on RSD).

Epsom salt soaks are good, in warm (not hot) water.

I found Benadryl gave me more pain relief than any other pain reliever I tried. Can also use Benadryl cream topically to numb the skin if the sensitivity is bothering you too much.
-Razzle

Chronic Lyme, Bart., Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut dysmotility & non-specific inflammation, Lupus, Osteoporosis, etc.; G-Tube; TPN-dependent
Meds: Flagyl, Cefazolin, Zofran, Essential Oils, etc.

Girlie
Veteran Member


Date Joined May 2014
Total Posts : 969
   Posted 7/16/2014 9:24 AM (GMT -6)   
Thanks Trav:

I was doing physical therapy because I thought I was treating RSD/CRPS...in which case would be necessary.
But, now I am just treating Lyme and see what I'm left with after. I have so many issues that I can't begin to treat them all separately - so I'm concentrating on Lyme and hoping most, if not all will be healed.

Heating pads don't help - my pain is nerve pain, unfortunately. I used ice on it for 6 months, but then stopped. I guess i'll have to try it again. I stopped using it because I read that you can do nerve damage if you ice too much for too long.
I'm thinking maybe just put some damp towels in the fridge, and try cold, but not ice. Maybe gentler on the nerves.
Symptoms started Sept, 2013 (maybe sooner?) Started Buhner's protocol May 15, 2014
Igenex positive July 3, 2014
Doxycyline started July 4, 2014

Determined to beat this!!!

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 13220
   Posted 7/16/2014 10:33 AM (GMT -6)   
Thanks for the correction, Razzle! Good to see you post again - or maybe your posts have just been slipping by me! LOL! Either way, it's good to "see" you again!

Girlie, Yes- we have to find what works for each of us. Although I had a lot of nerve pain myself, what helped me to get through it may not help others. That's why these forums are so good - lots of suggestions!

I hope that you find something to help with your pain. I was hit hard with nerve pain mainly due to Bartonella I believe, but I was miserable and the only thing that helped me was acupuncture.
Herb only treatment for Lyme & Bart ended Dec. 2011 - no active symptoms -Herb only treatment for Babesia ended Dec. 2012 - no active symptoms
Healed from tick-borne infections, now healing from the damage they left behind.
www.healingwell.com/community/default.aspx?f=30&m=2977364

Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV

Questions? Please email me!!!

Girlie
Veteran Member


Date Joined May 2014
Total Posts : 969
   Posted 7/16/2014 11:12 AM (GMT -6)   
Razzle: I think that's why I stopped using ice. I must have read about it at one point. What about what I suggested - just cold damp cloths on it? Would that be okay?

Again, I'm not sure if i have RSD - there was never any swelling, or skin sensitivity. I just mainly had nerve pain that started in shoulder blade, then went down arm, to hand. It started to get better over a few months, then turned in the other direction and got worse. But, I'm thinking it was Lyme that made it worse, or even the initial symptoms of radiculopathy could have been lyme.
I did get the thin skin on the back of my hand,and a bit sweaty (more clammy, not dripping sweat)...but I read lyme can cause skin changes too.
It's so hard to know what's lyme, and what is something else.

I do know that physical therapy did not help my arm/hand, which if it's RSD, it should have. It actually made it worse.
Symptoms started Sept, 2013 (maybe sooner?) Started Buhner's protocol May 15, 2014
Igenex positive July 3, 2014
Doxycyline started July 4, 2014

Determined to beat this!!!

Louise74
Regular Member


Date Joined Mar 2014
Total Posts : 475
   Posted 7/16/2014 11:24 AM (GMT -6)   
Hi girlie,
So I'm actually looking into a autoimmune pain response as a result of treating the lyme. I'm thinking that as I killed off the lyme, my body couldn't detox it, and then my body turned around and attacked itself. When I first got sick my autoimmune markers were normal and now they are off the chart. So I think I have some form of crps, induced by lyme. Not sure just a theory. Yours doesn't sound autoimmune induced so I'm sure it will go away with lyme treatment.

Tomorrow I'm going to the pain clinic to see if they can do anything for my throat, since I don't want any pain meds. I'm guessing that I also have severe acid reflux due to massive stress.
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