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05/02/2010 10:42 AM

RSD Aka. CRPS caused by Lyme Disease

DesperateLymiesWife
DesperateLymiesWife  
Posts: 9
Member

HI. My husband is now suffering from RSD since he had a port-a-cath placed in his chest for IV Rocephin back in August of 2008. The surgery caused the RSD.

The port was moved to the OTHER side of his chest and the pain contiuned. He was then diagnosed with RSD by 2 pain doctors and the port had to be removed.

We were in a terrible predicament because the Rocephin was working miracles so we went onto the next best treatment: IM Claforan Injections.

We had to stop this after 2 weeks because it triggered RSD in his lower extremities.

So here we are, husband is in extreme pain from head to toe and now we have 2 diseases with NO cures to battle.

Here are my questions:

Does ANYONE ELSE have RSD with Lyme disease??? I have researched and researched and can find no mention of anyone having both!!

Does anyone think the RSD will go away with the LYME if we can find another way to get his Lyme to go into remission???

Anyone know of any other way to get Rocephin into the body without IV's or Injections?

Dumb, pointless question, I know, but SO SO desperate I HAD to ask.

I posted an INTRODUCTION with a timeline of my husband's illness with more details if you are interested in reading it.

Thanks! Melissa

********************

edited; broke it up into short paragraphs for neuro lyme folks like me to read. bettyg, iowa leader

Post edited by: Bettyg, at: 05/02/2010 12:18 PM

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05/02/2010 11:30 AM
TaraT
TaraT  
Posts: 4164
VIP Member

I haven't started my treatment and am not familiar with RSD either. SOrry I can't help you but I can feel your desperateness...

My gut is telling me that the RSD is connected and is possibly and herx reaction and that yes he will recover from both as the lyme is treated.

I hope someone pops in here soon that can actually help...


05/02/2010 12:44 PM
Bettyg
 
Posts: 32277
VIP Member
I'm an Advocate

Does ANYONE ELSE have RSD with Lyme disease??? I have researched and researched and can find no mention of anyone having both!!

Does anyone think the RSD will go away with the LYME if we can find another way to get his Lyme to go into remission???

Anyone know of any other way to get Rocephin into the body without IV's or Injections?

Dumb, pointless question, I know, but SO SO desperate I HAD to ask.

I posted an INTRODUCTION with a timeline of my husband's illness with more details if you are interested in reading it.

Thanks! Melissa

welcome melissa, and thanks for the detailed posts; i've not had a chance to read your intro yet but will as time permits today.

YES, i've know of folks w/both diseases; i don't believe on this board.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/ 91443?

RSD and/or Lyme?

MBB3

LymeNet Contributor

Member # 13459

posted 02-23-2010 03:09 AM

Does anyone here have an RSD diagnosis?

Has it been attributed to Lyme or the more common cause of injury?

Most importantly, does RSD always have to include swelling or skin color changes?

I suffer horribly from burning skin sensations on what should be non-painful contact. This started a few years ago in my feet, now it involves most of my body from the neck down. I have NO motor problems.

Suspicious that RSD (autonomic nervous system) could be a part of this, but just not certain and looking for any experiences?

Thanks for any help

Posts: 235 | From The Country | Registered: Oct 2007

***********************

Pinelady

Frequent Contributor (1K+ posts)

Member # 18524

posted 02-23-2010 09:03 AM

http://hopeforjessica.blogspot.com/search?updated-min=2010- 01-01T00%3A00%3A00-05%3A00&updated-max=2011-01-01T00%3A00% 3A00-05%3A00&max-results=5

--------------------

[IMMost of us have had the burning skin sensations.

It is hopefully resolved with treatment.

For those it does not and progresses it is called RSD.

I soak in a hot tub with epsom salts, ginger root and lemon. You can also add baking soda if you are

not sensitive. I don't it makes me itch.

After soaking doc recommended rinse with cold/cool water to stimulate the nerves. I hate it but it does make me feel better.

--------------------

Suspected Lyme 07 Test neg One band migrating in IgG region

unable to identify.Igenex Jan.09IFA titer 1:40 IND

IgM neg pos

31 +++ 34 IND 39 IND 41 IND 83-93 +

DX:Neuroborreliosis

Posts: 3903 | From Kentucky | Registered: Dec 2008

****************************

FYI, PINELADY is a member on this board too!!

go to left side, private messages and chose at top COMPOSE, type in pinelady

and then copy the link of your post here and she WILL answer you; she's a personal friend of mine also and has begun ORGANIZING THE 1ST NATIONAL LYME RALLY IN STURGIS, KENTUCKY AT END OF AUG. 2010 !!

***************

of the previous folks i've know with lyme/rsd; they did NOT get into lyme remission.

1 died of barrett's esophagus and his rsd was horrible prior to his death.

************

alternative for question 3; i don't know but email:

lymedocs@aol.com that is ILADS, intl. lyme associated disease society, pres. barbara's email.

ask her for guidance and if she has suggestions or PUB MED ARTICLES relating to your issues. she's always gotten back to me in 1 business day; very prompt.

i hope this helps you on your huge quest! if i come across other stuff, i'll pm or put it here on your link so others can learn too ok. Smile

best wishes; your hubby is so lucky to have an ACTIVE, SUPPORTIVE wife like YOU. Smile most here don't have supportive spouses/family.

he married a WINNER!! Smile hugs Kissing

bettyg, iowa lyme activist/leader Silly


05/02/2010 04:10 PM
Pinelady
 
Posts: 72
Member

Sorry you are going through this. I do believe they think it is virus' that help cause RSD.

I think it is a find line defining what needs treated when. But needs much more research into why this happens.

I do believe the blood values could provide valuable clues if suddenly they were tipped on the scales to be off in many areas of cells and meds could be stopped before the virus' are allowed to take over.

I think there are some doctors like Dr. Jem who has treated both types of patients and who also knows ways around fighting virus'.

He has treated patients with HIV virus'. As well as Dr. Cantu in Mexico who is now treating Jessica, and many others whom they believe it was Mono that contributed to her RSD.

On another note for fighting virus'=You might try a little coconut oil=pea size pinches at first to spoon as it can be very powerful to us Lymeies.

I have virus' as most of us do, and I can feel it working. Prayers you find the best to treat this.

Post edited by: Pinelady, at: 05/02/2010 04:51 PM


05/05/2010 07:31 AM
DesperateLymiesWife
DesperateLymiesWife  
Posts: 9
Member

Thanks so much, BettyG. Not only am I looking for medical information so I can design a protocol to help him, I am also looking for stories of people who have made it to the other side of this nightmare alive and well. Just about every night, he lays in bed next to me writhing and whimpering in pain and all I can do at these moments is whisper in his ear that "we ARE going to get through this and YOU are going to get better." Other people's personal success stories will help keep my whispers of hope strong and CONVINCING. It is so hard sometimes to provide hope when I am feeling so hopeless myself. AND the hope right now is a powerful need because I know he is losing his will to even live when he says things like "I can't do this anymore, can't go on like this for much longer." Our teenage daugter attempted sucicide and almost died 3 1/2 years ago so I am paranoid when I hear such comments. Actually, our daughter, now 17, was diagnosed as being bi-polar and now has swollen wrist joints that hurt, sleeps all the time, and aches all over all the time now so I am getting her tested for lyme soon. But her issues are another post!

Thanks again for your help and i'll email the people you mentioned in your post.


05/05/2010 07:53 PM
DesperateLymiesWife
DesperateLymiesWife  
Posts: 9
Member

Thanks, Pinelady. Do you know if The Vitamin Shoppe carries coconut oil? I am puuting a list together and going shopping there tomorrow. I hate waiting for things to arrive in the mail!

05/06/2010 01:59 AM
Bettyg
 
Posts: 32277
VIP Member
I'm an Advocate

dear wife,

please EDIT your last post and break it up using my guidelines below so extreme neuros like me can read and comprehend it; then we can help and guide you as necessary; big thanks Smile hugs

Welcome to MD JUNCTION!! I'm so glad you found us! You've come to the right place for education and support!

The following are some links that may be helpful to you:

Seeking a lyme literate md; start YOUR OWN POST on this new forum; do NOT just add it to the introduction post only.

http://www.mdjunction.com/forums/lyme-disease-support- forums/llmd-info/1181374-lyme-literate-md-requests#1181957

(applies ONLY to those who posted elsewhere already ok.  )

NEW FORUM, SEEKING LLMDS, the last forum

start a NEW DISCUSSION by clicking on that at bottom of the page, copy your text to the body of message as you posted above read my detailed instructions in christine's 1st post explaining how to use this new forum; big thanks! Hugs; example below

subject: 4 yr. old needs KIDS LLMD IN MD, VA, DC area

http://www.mdjunction.com/forums/lyme-disease-support- forums/llmd-info

Lyme Disease and Co-Infection Symptoms

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/318635-lyme-and-co-infections- symptoms

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/81386

Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" http://www.ilads.org/lyme_disease/treatment_guidelines.html

Pages 17-19 discuss Adult and Kids Treatments

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/1173561-08-kids-lyme-guidelines-of- dr-burrascano

Dr. B's Supplement List

http://www.lymepa.org/Nutritional_Supplements.pdf

Making the most of your LLMD visit

http://flash.lymenet.org/scripts/ultimatebb.cgi? ubb=get_topic&f=1&t=020605#000005

Herxheimer “herx” side effects to antibiotics & supplements …. Symptoms, treatments, and more! 1.25.10

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/1186591-jarischherxheimer-reaction- symptomstreatment

Herxing Reactions:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89322

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=041517

CHECK OUT THE “LYME FACTS” forum; lots of good, accurate info there for your lyme journey.

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research

print off BUT YOU LOOK GOOD article on page 2 of this post where I broke it up for others to read easier; we neuro lymies!

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/1275535-feeling-guilty-for-being- sick/limitstart/10#1279159

Suggestions for When You Need Treatment and Funds Are Low plus Financial Burdens post towards bottom; extremely detailed by Melanie Reber

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/22281

WHAT IS LYME DISEASE? as quoted by Dr. Burrascano

http://www.mdjunction.com/forums/lyme-disease-support- forums/studies-research/1123178-a-must-read-for-new- members#1124851

Link to Turn the Corner Foundation: Good info and contacts for finding a good LLMD.

http://turnthecorner.org/lyme-disease-quick-facts.htm

LYME YAHOO GROUP BOARD FOR EACH STATE FOUND HERE!

People seeking doctors might be able to get help from their state online information and support group. The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately.

To find your state group, go to

http://health.groups.yahoo.com/group/statenamelyme

example: http://health.groups.yahoo.com/group/newyorklyme

South Carolina is the only state that needs a hyphen between the statename and lyme, e.g. http://health.groups.yahoo.com/group/southcarolina-lyme

http://www.lymenet.org/SupportGroups/

This explains the MEDICAL “POLITICS” AROUND LYME and why you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs, naturopathic doctors:

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

You should also be evaluated for co-infections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing.

www.igenex.com; http://www.frylabs.com; http://www.clongen.com; http://focusdx.com

For the Igenex Western blot IgM and IgG blood test drawn on M, T, or Wed am. Check current$ 3 wks. for results!

Call 1-800.832.3200 for current prices.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/ 78648?#000003

They will also send you a free “test kit” with their required form, all the test vials, & box to ship it in with return postage!

Be sure to download Igenex's required form IF you haven't called for Igenex to send you THEIR test kids!

MD, DO, ND, AC, DC are all fine** must sign, date, and show diagnosis code on there why he's ordering the test.

Optional tests include: co-infection panel for your area of country and PCR whole blood

Igenex is pre-pay/out of network for most insurances. If you are on medicare, Igenex will file the paperwork & it's free to you.

Get copies of all of your special bloodwork.

Overseas instructions for sending to Igenex/Fry Labs 2-23-08

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=063751

Dr C's Western Blot explanation is discussed here:

http://www.mdjunction.com/forums/lyme-disease-support- forums/tips/1092391-missouri-drcs-western-blot-explanations- of-nos#1093495

http://www.mdjunction.com/forums/lyme-disease-support- forums/tips/3683-igenex-calif-western-blot-igmigg-testing-

ILADS - The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases. www.ilads.org

Call ILADS they are happy to refer to LLMd's around the country. Here is the contact link, scroll down beyond the email form for their phone number:

http://www.ilads.org/contact/contact_ilads.html

Under Our Skin Lyme Disease documentary www.lymediseasefilm.com

American Museum of Natural History 2 SLIDE SHOWS

http://www.amnh.org/sciencebulletins/index.php? sid=h.s.lyme_brain.20100125

when you get to the site go to upper right hand corner and type in LYME DISEASE hit enter and it brings you to this very well-done slide show on LYME disease! it shows ”brain lesions” too. 1st one is DATED JAN. 25, 2010.

Betty, Minoucat, & Connie Mc's SSDI, SSI, & LTD DISABILITY RECOURCES FOR Disability, Insurance, Dealing with HMOs

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/3118-bettygs-disability-info-25- pages

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/13935

Success Stories

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/57269-post-your-success-story-here

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/15820

Distinct Pattern of Cognitive Impairment Noted in Study of Lyme Patients …..MUST READ!! EXPLAINS EVERYTHING !!

written by Marian Rissenberg PhD & Susan Chambers MD,

The Lyme Times, Vol. 20, Jan-Mar 1998, pp. 29-32

http://www.anapsid.org/cnd/diffdx/rissenberg.html

NEURO-COGNITIVE LYME DISEASE links from cheryl's site 1.10

http://www.lymeinfo.net/neuropsych.html

Porphyria (including KPU)

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/ 87840?

cardiac symptoms please read!

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/77325

SUICIDE HOTLINE PHONE NO. & PREVENTION TIPS

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic; f=1;t=058059

http://www.mdjunction.com/forums/lyme-disease-support- forums/medicine-treatments/1275497-national-suicide- prevention-lifeline-tips

TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links

http://flash.lymenet.org/scripts/ultimatebb.cgi? ubb=get_topic;f=1;t=065801

VESTIBULAR SYMPTOMS

http://www.vestibular.org/vestibular-disorders/symptoms.php

DIZZINESS - many details at this thread

http://www.mdjunction.com/forums/lyme-disease-support- forums/medicine-treatments/Itemid=217/func=post/do=reply

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/ 65801?

TREEPATROL'S New Member Learning links: this can wait! There are OVER 1,000 LINKS here but treepatrol has organized it as best as he could

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/29917

NEED A LAUGH, READ HERE & ADD YOUR OWN

http://www.mdjunction.com/forums/lyme-disease-support- forums/lounge/1041725-looking-for-my-need-a-laugh-post- bettyg-started

you tubes, post your FUNNY or INSPIRATIONAL ones here http://www.mdjunction.com/forums/lyme-disease-support- forums/lounge/1114416-you-tubes-post-your- funnyinspirational-ones-here

Betty's suggested posting guidelines:

Many of members have neuro lyme, and it is hard to read long solid block text and be able to comprehend; example, me, 40 yrs. neuro chronic lyme, so we are able to comprehend and read. Then we can assist and guide you ok.

please post in short paragraphs like you see below or look at a few other posts, but we neuro folks need them short.

1-2 sentences MAX and hit ENTER TWICE to doublespace between each paragraph. hugs DO NOT BREAK UP THE SENTENCE THOUGH…we neuros lose our train of thought if it is broken up in the middle unless it goes on FOREVER!

For easier reading, please edit your post. You can break up your longer paragraphs into smaller paragraphs. Please hit “enter” key twice after each paragraph, also.

Go to left hand corner; mark box to receive all replies and click edit send.

Thank you for posting in a manner that makes it easier for all to read and help others.


05/06/2010 04:24 PM
zoemajik
zoemajik  
Posts: 666
Member

Hi Melissa,

Welcome Smile

I read some of your daughter's symptoms in another post as well - you're right indeed, it certainly sounds like Lyme and co. The mental problems, the joint pains, hypothyroid but meds not helping and etc. ...

I went undiagnosed for YEARS since I was a teen, and let the pains go because I didn't know I had Lyme.

Was getting to the point where I was having bi-polar symptoms and mood "cycling" - rages, anxiety, depression, and panic attacks, agoraphobia, sometimes would go into a seizure after a bad attack, along with the other symptoms.

The mental and personality changes were terrifying on top of the pain.

I was diagnosed in 2008. I was reading about thyroid problems and thought I might have one, so I went to the doc. I was lucky that a regular doc thought to test me for Lyme! I found this site and a Lyme-literate doc in the process.

I'm still in treatment. I'm finally seeing significant improvement. I try to keep my diary updated - it's in my profile if you want to read.

Are you seeing an LLMD? If not, or if you need a list of others in your area, please follow BettyG's link and get a list.

My LLMD treated entire families who had Lyme and are seeing improvement as well. Keep at it - keep reading and keep fighting to get this under control in your family - it's worth it to all of us Lyme patients as well, believe me.

Best to you and your family,


05/25/2011 05:38 PM
ce2bloom

Hi Melissa,

I have read this forum for a day or two and just joined so that I could respond to your 5/02/11 post.

I have RSD - diagnosed Jan. 2011 following knee surgery that I had last Nov.

I am waiting to hear the results for lyme disease. If I have lyme - it is late stage - probably undiagnosed for over 16 years.

I was tested before, and the doc believes I had a false negative. My husband got a tick bite over 16 years ago. We saved the tick and took it to a local doc.

He was told there is no lyme in our area and there is nothing to worry about.

Ironically, we live in the Redwoods in California.

I also have received numerous diagnoses over the years:

1997 Fibro

2006 full physical collapse - CFIDs, adrenal failure - hypoadrenia, hypothroidism

2007 hypopituitarism

That is not all of them, but it gives you a general idea.

RSD or CRPS is a neurological disorder. Everything I have read and was told by doctors is they do not know what causes it.

My doc has another patient that is 12 years old and healthy, and she sprained her ankle and got it.

I am not a doc. I can share with you my research and what doctors have told me about it.

My understanding is that it is your sympathetic nervous system that causes the problem. (I don't know if the upper body is different.)

I have received 6 sympathetic blocks for the RSD followed immediately by physical therapy - otherwise the block is a very short term temporary relief

The next step for me is a cortical stimulator and I will wait before proceeding with that step.

Does Lyme cause RSD - I don't think so - but I think having Lyme puts your body at risk.

RSD is a pain cycle and that cycle has to be broken to get relief.

Is your husband on any medication for RSD, such as gabapentin? It can really help with the pain.

I am only able to take a lower dose 1200 mg. or I experience severe adverse side effects (maybe that is related to lyme - I will let you know).

Did he have physical therapy - such as mirror therapy - after the blocks?

I am wondering - if they can control the RSD pain - maybe they can proceed with lyme treatment without flaring or spreading. The last thing you want is for RSD to spread.

RSD is like no other pain I have experienced. I have had major surgeries, broken bones, massive internal bleeding...and I can tell you no pain compares to RSD.

I can appreciate your desparation in trying to help him. I know the frustration when answers are lacking or are just not there.

I know from my experience.

My suggestion is control the RSD first, you can't heal in that kind of pain.

My RSD is not gone, but it is within tolerable limits if I don't flare it. Your husband will learn (when the pain is in check) what causes it to flare.

I know of some good CDs that are specifically for pain - meditations and guided imagery. They are helpful at night when you can't sleep due to pain. Please let me know if you are interested.

I hope this helps in some way.

Wishes for Blessings to You - CE

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